Sounds of Life

The Sound of His Mama's Heart

2011-11-09T14:42:00.000-05:00

I guess I've more or less just "documented" everything throughout Hazaiah's life, which was what I wanted to do; I didn't want to forget one little bit of it... My emotions have been so jumbled up inside of me all along, but I never could sort them out enough to write what I was really feeling during it all. I couldn't say it, couldn't explain it, and honestly, at times, didn't even know what I was feeling... I would attempt to pray earnestly for the life of my baby, but usually no words would come. Jason would verbally pray for both the baby and I, and the other children and my mom, but I would lay there, listening and silently joining in while the tears effortlessly fell on the pillow. I would try to tell God all about my fears and hurts, but I didn't know how to say what I was afraid of, and I couldn't comprehend the depths of my pain. I believe I have learned, at least partly, the meaning of the verse:
We know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered...
Most of my prayers were just tiny phrases asking for mercy, cries for help, and groans of "Oh God..."

But there were a few times I remember... During one afternoon I was sitting by Hazaiah's bed, holding his little hand and rubbing his head. It was quiet in the room, and the lights were low. Hazaiah was sleeping peacefully, his numbers on the monitors were all steady, and it had been awhile since any nurse had been in there.

"Please God", I prayed in a whisper, "Please let us bring him home, at least for a little while..."

Ye know not what ye ask...

What...? Why did I think of that scripture? I thought of the question the disciples had just asked Jesus. Perhaps they had good intentions, but they did not realize the magnitude of what their question meant. Did I not realize the magnitude of my own request? I pushed the thoughts away...

The next day I sat there again. This time I was crying silently as I sang to him. I wished so badly that I could hold him close to me to comfort him, and myself...

"Please God", I prayed through my tears, "Please let us bring him home, at least for a few days..."

Ye know not what ye ask...
Are ye able to drink of the cup...?

God, I am. I am. I am able... I know it will be hard; but others have done it, I can too. I can take care of a colostomy bag; I can feed him through a tube; I can suction out his ventilator...
But our all-knowing Father knew I couldn't...
And as I looked at my little baby lying there, I believe I knew I couldn't too. I wouldn't admit it then, but I know I wondered, "If he desats and stops breathing just from getting his diaper changed, how will it be at home when I change him? How can I give him a bath and dress him?"

And looking back now, I see how God was merciful to me. If we had been sent home, with or without a ventilator, and I had been at home when the breathing tube finally stopped helping him, I would have worked and worked with all my might to get him to breathe again. I wouldn't have been able to hold him in my arms during that time; And I would have lived with the agonizing questions of "What did I do wrong?" "Could I have done anything differently?" "Would this, or that, have helped him live longer?"
Instead, we did get to hold him, though not as long as I wished (but would it have ever been long enough?); and we had the nurses there who carefully and quietly walked us through every step- retreating to the background during the times of intense grief or family closeness and then stepping forward with thoughtfulness just at the times when we weren't sure what to do next...

I thought I had prepared myself for Hazaiah's life, and death. During my pregnancy I had read so, so much on Trisomy 13: all the symptoms, the treatments. I had read nearly a hundred different testimonies of other families with Trisomy 13 who went through the birth and death of their own baby. Literally, that many, a little at a time every few days. I knew every story had various experiences, but it was true: most of them died within the first month. The one thing that was consistent was that they were all different; but even so, I knew what the probable outcome would be- or so I thought. There were a few, a very few that lived beyond infancy, and I knew that I hoped so much that we would be among those few...
But still, I was prepared. Or was I?

See, all of the preparations I made were all abstract preparations. All the stories were of other people's babies. I had never met them; and though I could still sympathize with their lives, I didn't know them. But now, this was my very own baby. I knew him. And I never prepared myself to love him so much... And then to let him go...
Some people may think: Well, you have 5 other children. You should be thankful for them and give them all the love that you have...
And before, I would've agreed. I am very thankful for the children I have, and I know that the thought of "giving them all the love that I have" is a good intention; but there is something incomprehensible about loving each additional child that God gives us.

When I had my first baby, I loved her so much. I was so close to her, and seemed to understand her infant thoughts in ways that I never dreamed possible. So when I was expecting my second, I wondered how this would all work. Would I love her the same way? Would I love my first more? -or less? I dreaded the thought of either. How would I divide my heart to love them both equally and yet still be just as close to both of them as I was with one? I clearly remember having these thoughts at different times throughout my second pregnancy...
But it was after my second daughter was born that, with great delight, I discovered that I didn't need any division of heart! It was as if with the birth of this daughter, God had also birthed another entire new heart within me- full of love and attachment- just for her and all for her! I didn't worry anymore- each additional baby came with another full heart of love within me that was specific for that child...

I didn't see Hazaiah immediately after he was born- they took him away too quickly. I didn't hear him cry, for he wasn't even breathing. But as I heard the commotion and panic all around me, I began crying, and crying out, for his life and breath. I never did hear my baby cry. He couldn't cry with the ventilator in, and he just didn't cry during the few hours after they first tried to see how he'd do without the ventilator. Jason heard him cry though, that first night, within the first hour of his life...
After that first hour, they finally wheeled me over to see him in the NICU. When I saw him there, I knew he owned his very own full heart of love within me. That love longed to pick him up and hold him close, to comfort him with nursing, to let him hear his mama's voice close to his ear- telling him how loved he is, what a good baby he is, and how I am so sorry I have to leave him there without me; to tell him not to fear all of these funny lights and noises, and all of these different people and voices he was not use to... But that same love had to choose to refrain, to leave him there without any explanation, without any holding, and with very little touching. I tried to get close to him, to talk to him, but I don't know if he heard- there were so many things in the way...

There is something special -almost magical- about being a mother...
You know when a baby is hurt, or frightened; the baby cries and may get picked up and passed around to a few people, but nothing helps...

Then mama comes, and as the baby is placed into her arms, suddenly there is peace. The mother doesn't get conceited in her privileged position, it's just the way things are. Everyone smiles because, well, it's the way things are supposed to be...
I never got that with Hazaiah...
You see, I never heard him cry, but I saw him. During the first week of his life he would attempt to cry, but no sounds came out because the ventilator blocked his vocal cords. His face would scrunch up and his mouth would open and close while he wiggled around slowly...
I tried so hard to comfort him... I would rub his leg or his arm or his head, I would talk to him to tell him I was there, but it didn't work the same. I began to wonder if he even realized I was his mama, and that I was there...
It hurt so badly...

Then there are times when babies are in a strange environment surrounded by unfamiliar sights and sounds; They look around with fear in their eyes and a small whimper in their voice until at last, they see their Dad and Mama. Suddenly filled with relief, the dam breaks and their small whimper bursts into dramatic sobs as they "let it all out" and cry even harder on their parent's shoulder...
Sometimes it seemed like this is what happened during those first few days. Hazaiah would be laying there, sometimes with his mask covering his eyes, and sometimes without. We would come and speak gently to him, telling him we were here now as we softly placed our hands on him. He seemed to get so emotional, like he was "letting it all out" now that we were there. He would look up at us as he held one of our fingers, and if I didn't know better, I would guess that he really understood that he wasn't with us like he should be, and that he missed being with Mama all the time, and hearing Dad tell him "Good morning", and trying to kick Dad's ear as he talked to him through the uterus every evening...
Our baby's life was not the way he was use to, nor was it the comfort of his Mama's arms and Dad's hands. It was so hard to see him like that: to know he was hurting. Perhaps he was confused and scared; Did he think I had forsaken him...? The questions and fears pounded my heart...

Determined that he would know me, and that, as best as I could, I would let him know I was there, I came every day, and stayed as long as I could. I kept touching him and talking to him, trying to see what comforted him the best. The nurses gave me their chair, and left the pump in the room for me to always have. I learned that he really enjoyed having his head rubbed, and I could hold his legs and stroke them firmly, but the light caressing seemed to unsettle him a little. I had hoped that my touches would be magical, like a mama's complete embrace can be, but he would still desat at times, and my touches couldn't always stop it- but sometimes they would, at least for a little while...
Whenever I would first get there, and put my hand into Hazaiah's little bed, I would slip my finger into his little hand and he would grasp it so tightly. He always held my fingers so tight... We would sit for hours like that, and I would sing to him. Sometimes he would start wiggling and seem restless, but just holding my finger could calm him down. There were a few times- how precious they were- that he would pull my finger up to his mouth...
I watched him make sucking motions on his breathing tube, and that, too, nearly broke my heart... He needed his mama's comfort of sucking that I could offer him- yet I couldn't offer it to him. I couldn't comfort him in that way...
I would sing to him so that he could constantly hear my voice. Most often he would sleep, but sometimes he would open his eyes and just calmly watch me. I think I always got a burst of adrenaline whenever he woke up... Once, when one of the counselors was there, I was talking to her and noticed the baby stir a little. His eyes opened and he looked around. I was sitting in my usual place, right beside him.
"Look," she said, "He hears your voice and woke up."
It seemed to be true. I had been singing to him softly before she came, but right before he woke up I had raised my voice a little to speak to her in a normal conversation tone, and then his eyes opened. This brought so much joy to my heart...
When I would leave, I would always make sure he was comfortably sleeping, and that all his numbers were good. Then there were days he started waking up right when I had him all tucked in good and was ready to leave. Of course I wouldn't leave him like that- so I would talk to him longer and be sure he fell completely asleep again... Those times were so precious to me...

But it was so hard to only have those several hours each day. I kept telling myself that it would be OK; that we would bring him home soon and he would never remember those times of fear, loneliness, and pain. His last days would be spent at home with his family where there would never be any lack of arms to hold him and people to talk to him. I imagined that all of our love for him could keep him alive longer and longer, but it wasn't to be...
Back at the Ronald McDonald house I would look at his pictures while I pumped, and my heart would ache as I thought of him there in the hospital. As things worsened, often I would just slump down with the weight of it all, and the tears, and the questions would flow... I can't even hold him- does he think I've left him? Does he think I don't care...? Does he know I'm right here, hurting with him through his entire life...? Oh, my baby... I wish I could hold him, relieve his pain, and take it all away...

And then that final day arrived... I finally got to hold him, and there was no fear of any numbers on the monitors, because the ventilator wasn't working anymore anyway... My heart full of love for my baby tried as hard as it could to pour itself completely out on him during those few minutes left of his consciousness. I tried so hard to explain it all to him- to tell him I just wanted to bring him home, that I loved him so much, and that is why his life had to be this way. I never wanted to let him go, and so I had to try... And I tried so hard... But then I told him he would be Ok soon; as my tears fell on his face, I told my sweet baby he would be Ok soon...
And he is Ok now, I know he is... But I wish I knew what he was doing... Every time I left him, as hard as it was, I always knew what he was doing. I knew who his nurse was, and if there was a problem, I knew they would call. If I ever just got curious, I could always call there and ask how he was, and they would give me all the details.

But now- what is it like? Is he still a baby? If he is not full grown, I don't see why he would suddenly jump to being a toddler or a child... It seems he would either be in his "prime" (whatever that is) or he would be just as he was- 19 days old upon entering Heaven... If so, then who is taking care of him? There were 2 other babies that died right at the same time as Hazaiah- and those were just the ones I know of, so I can only imagine how many other babies are there right now; surely the "lap of Jesus" would be full. Would Jesus have time to singularly take care of each little one...?

These may seem like strange, even misguided questions; but I don't want to just make up my own fanciful idea about what the babies do in Heaven. The Bible is very quiet about the babies that die, and I want to know the truth...

One day... One day I will know... Until then, I have to trust that it's good. And perhaps, slowly, the pain of not being able to bring comfort and peace to my baby while he was here, not being able to have him respond to me with the need that all babies do, not being able to hold him when he cried, not knowing if he even knew I was there... slowly, that pain will lesson.

God, please tell him that I love him. Please tell him that I was here for him, that I did all that I knew how to do, and that I just wanted to bring him home... Please, God, teach him about his mama's heart...
And God, I know that You must understand... You also watched your son suffer and die... Your son, in His humanness, may have thought you left Him, for He cried out, "My God, My God, why have you forsaken me?" We even have doctrines about the Father turning His face away in that moment... But is it possible that you didn't turn away? That it was only how your son "felt" at that moment? Was your Father heart aching with grief at that time as you heard Him? Did you long to hold Him? -To relieve Him of all of His suffering and take away all of His pain and just bring Him home...? For in Isaiah 53:11 we have a different perspective of Jesus's time on the cross- Your perspective. It tells us:
"He shall see of the travail of his soul..."

The Sound of Happy Pictures

2011-10-28T16:00:00.001-04:00

The night I was born...

mama kisses
ahhh...

Obituary For Our Sweet Baby Hazaiah Jude Martin

Hazaiah Jude Martin was born October 1, 2011 at 8:30 pm in Macon, GA. He weighed 3 pounds 3 ounces and was 16 ½ inches long. After living for 19 days, he passed away in his Mama and Daddy’s arms with all his siblings gathered around him on the morning of October 20, 2011 in the NICU at The Medical Center.

During his life here on earth, Hazaiah experienced many times of hand holding, leg touching, and head stroking. He had good nurses who lovingly took care of him, and he liked to curl up with his comfy Zaky body pillow. He heard his family sing many songs to him, and tell him over and over how much they love him.
He enjoyed his mama’s bedside visits during the days and nights, when he could hold her fingers and she would sing to him; He looked forward to his sibling’s visiting hours when they would all stroke him lovingly and take pictures of him; He was happy he got to meet his Grandma Jeanne, and liked when she would visit and rub his head and baby feet; And he loved when his daddy would get there in the evenings, or often in the daytime, to tell him all about his day, and encourage him to breathe strong so he could come home and we could all take care of him together.

Hazaiah never made it to his family’s earthly home, but instead has gone to our Father’s perfect heavenly home, where he is free from all of his tubes, wires, and any discomfort. He is there in peace, safely in the arms of Jesus, waiting for his family to join him.

Hazaiah is survived by his Daddy and Mama, Jason and Amber Martin, his sisters Jasmin, Heaven, Skye, and Modesty, his brother Noah, maternal grandmother Jeanne Spuller, paternal grandparents Jerry and Rhoda Martin, several uncles, aunts, and cousins, and many, many friends whom he is looking forward to meeting in person one Day…

We love you Hazaiah, and are so grateful for the 19 days of your life we were blessed to have with you. You will always be our sweet baby boy…

Day nurse "J"
He takes good care of me during the day...

L: Night nurse "P" ~ R: Therapist
They take good care of me at night...
They are getting ready to put me in my mama's arms now.:)

NICU Director "A"
Now they take all this sticky stuff off of me...

Grandma came from CA to see me.:) She likes to take my picture...

I like to hold Grandma's finger...:)

With my big Brother Noah:)

My eyes are open, so you can't leave! ~ I got Noah's finger now ~

All my girlies love me!

So nice to be loved...

My mama makes me comfy...

I snuggle with Mama's fingers all the time...

Mama loves me...

Mama tells me, "Night-night sweet baby..."

Daddy encourages me to breathe strongly...

Thanks, Dad, for blocking the light out of my eyes while they change my diaper.:)

Firm Daddy hands help me sleep...

I like to suck on my little fingers.:)

First time Dad and Mama held me - only an oxygen tube blowing in my face.

This is where I like to be...
(But wow- my poor mama is so swollen from all those IVs they gave her!) ;)

During my last full day and night in the NICU,

the nurses let my whole family come in and take turns holding me.

We had to break it up into sessions so I didn't get too tired;

but, Oh Boy that was fun!:)

My sister Sky'e first time holding me- see how happy it makes her!:)

She makes me so comfy...

I think somebody told a joke...:)
See the private room they gave me- they knew my family wanted all the time they could with me...

Now it's Noah's turn- he's a good big brother!

Noah likes my feet.:)

Sorry Noah- I need the nurse to suction me out a little...

Next is Modesty- she's been waiting for this for a while!

Modesty always checks my monitors to be sure I'm breathing alright...

It's time for me to eat my mama milk, so Noah got to hold it while Modesty still held me.:)

Jasmin is so happy to hold me now...

I like her sweet kisses.:)

I must be famous!

Heaven is the last of my siblings to hold me for now...
She is happy it's finally her turn.:)

Mmmm... Sweet sister kisses.:)

I think everyone checks my monitors!:)

My hair matches my Dad's beard!:)

Ahhhh...
Yum yum :):):)

They love me so much...

This is my family.:)
I like to see everyone smiling and nobody crying...
XOXOXOX

I Will Carry You (Selah)

2011-10-27T12:24:00.001-04:00

There were photographs
I wanted to take,
Things I wanted to show you...
Sing sweet lullabys,
Wipe your teary eyes.
Who could love you like this?

People say that I am brave, but I'm not;

Truth is I'm barely hanging on...

There's a greater story

Written long before me,

Because He loves you like this.

I will carry you,

While your heart beats here.

Long beyond the empty cradle,

Through the coming years;

I will carry you,

All your life.

I will praise the One

Who's chosen me,

To carry you.

Such a short time,

Such a long road.

All this madness,

But I know-

That the silence

Has brought me to His voice.

And He said,

"I've shown him photographs of time beginning;
Walked him through the parted sea.
Angel lullabys,
No more teary eyes...
Who could love him like this?"

I will carry you,

While your heart beats here.

Long beyond the empty cradle,

Through the coming years;

I will carry you,

All your life.

I will praise the One

Who's chosen me,

To carry you.

Big sister Jasmin

Big sister Heaven

Big brother Noah

Big sister Skye

Big sister Modesty

The Sound of Preparation

2011-10-24T08:20:00.000-04:00

Friday, October 21 - Sunday, October 23, 2011

Friday we went to the funeral home...
As soon as we pulled in and parked I turned to Jason, "Oh, Honey! We forgot the imprint molds!" -Someone had given us a gift where we could make impressions of his tiny feet and hands. We were really looking forward to it, because his toes and fingers were made in such a special way, and we wanted to remember them forever. But we never had a chance while he was living, so we thought we'd ask the funeral men if they could do it, since they'd be working with his body anyway. But we had forgotten to bring the kit...
"Well," Jason said, "We'll just ask them if we can bring it later."
We went in and waited on their couch for a few minutes, because the man we needed to speak to was with another family. As I sat there, I realized my baby's little body was somewhere here, in this same building... That made me happy.
We went in to talk with the man- unsure of what all we even needed to talk about. We went through a few things, and then I remembered about the imprints.
"Is my baby here...?" I asked him.
He nodded. From where I sat, I looked out the window into the hallway, as if I thought I could see him or something... Then I told him about the imprint kit we had at home, and asked if that is something they could do for us...
He nodded again, and then spoke quietly, "Well, is that something you would like to do yourself?"
I felt my face immediately brighten, and my eyes smiled along with my face, "Yes!" I said, "Can we really?"
He nodded again, and just looked at me for a while... He actually looked sad, and I looked away. I heard him sniff before he continued on talking to Jason about some of the plans for the funeral...

We left around noon, and went home to eat lunch and to bring the imprint molds back. We had forgotten the baby's clothes and blankets too, so we gathered those together. When we got back to the funeral home, Jason decided it would be good to pray for me before we went in to see Hazaiah's body...
We went inside then, and the man led us up the elevator and towards a small room.
"Now, we're going to what we call our little 'dressing room'," he began, "It's not quite as..." He stopped like he wasn't sure how to say it.
"...Not quite as nice and cozy as the downstairs furnishings?" I asked.
He nodded.
"That's OK," we told him, "We kind of expected that."
But the room was alright. It looked like a little doctor's room with a patient bed and a counter off to the side with cupboards under and over and a little sink on one side...

I saw Hazaiah's little body through the crack of the door as we were going in. When I got past the door, I saw him entirely... He was so cute. He looked like a little dolly just laying there sleeping. He had a diaper on, and a little bandage and towel over his middle where I'm assuming they had to make an incision for embalming. His little knees were bent naturally, just like in the hospital, and his little arms were bent just as naturally- with enough flexibility that we will be able to have his hands up under his chin just like he always liked to hold them... His little fingers were semi curled, and looked comfortable. His sweet hair was curled and combed so beautifully...
As much as I loved looking at him there, it was different. I looked at the man and told him, "It's amazing what a difference life makes in a person's body. When the spirit is gone, it's just so different..."
He nodded.
Jason formed the clay and rolled it out in the frame. I held the frame while Jason put Hazaiah's little foot into the mold. Then we did the other one. It was perfect...
We tried to do the hands, but the tiny fingers were too stiff to straighten, and we didn't want to get the clay stuff in his little fingernails. We decided we would just write his birth information on that side. We have a lot of pictures of his hands anyway...

The man asked us if we would want to get him dressed ourselves too.
"Oh yes we would- Thank you!" we said.
I wasn't sure how to handle his little body like this, and I asked him how to do it.
"Just like you would normally," he told us.
So Jason picked up our baby's body, and I laid the sleeper under him. We both put his little arms and legs inside of it, and snapped it up.
"Oh the blanket," I began, "You probably have to do his makeup and stuff before we would wrap him in his blanket, right?"
"Yes, we would," He said, "But when we get the casket in, we'll call you and you can come back and wrap him up and lay him in the casket if you'd like."
Oh my heart was so happy... "Yes, we would love to do that," We said "Thank you so much..."

So far we are so pleased with this funeral company; they have been so gracious and accommodating...

That afternoon we went to the church yard to dig the hole for the vault and casket. Jason and Noah did most of the digging and shoveling, but all the girls helped too. The dirt was so hard towards the bottom... Jason made it so nice and squared up and everything, and he even made the head area about 1/2 - 1 inch higher so that Hazaiah's little head would be slightly more elevated than his feet. -it just seemed more comfy that way...
He took his time with it, and made it so that we would all be "satisfied" -as much as could be expected anyway...
When he finished, he helped me down in there so that I could write in the dirt:

We Love you Hazaiah

Saturday, Jason and I got to sleep in a little, but the children all went to the "Kids for Kids" walk to support the ABC Women's clinic. The people there painted little footprints on the children's faces- in remembrance of the tiny babies in the womb- but our girls asked them to put 6 toes on their footprints... Then they had an "H" on the other side of their face. Of course the painters were curious about their requests, so that gave the children an opportunity to tell them about their baby brother Hazaiah...:)

Jason and I went to order flowers and then to find a guestbook at the Olive Branch. The children had developed pictures, so we spent the later afternoon arranging them for display, picking out songs, and gathering the baby's things that we wanted to be at the viewing while Jason and Noah did some work in the yard. That night, Jason's parents came over. Although we wish it were under different circumstances, it was still very good to see them after they've been over in Africa for so long...

Sunday was the day of the viewing. That morning, the funeral home called to say the casket had been delivered and that we could come and wrap up our baby and lay him down. When we got there, they had it all ready in the upstairs room where we saw him last. We wrapped up our little boy snugly in his blanket and carried him over and laid him in his little bed. He fit so nicely inside, and looked so comfy with all the fleece lining all around him, and even a little pillow for his sweet head.
It was hard -it's unnatural- to close the casket; but we did so that we could carry him downstairs to the room where the viewing would be. There, we opened it again and arranged his little blanket and monkeys that his siblings had bought for him right after he was born.
We went home and finished getting everything ready...

We came back early before the viewing started... I tried to get out all my tears before everyone arrived, but I guess that's not all together possible...

We were so thankful for everyone that came. So many people cried with us, and shared encouraging words of support and blessing. So many times it seems like we're alone- like the pain is so great that no one could've possibly gone through this before; but then we hear their stories, and we realize that others really do understand... One of Hazaiah's nurses from the NICU was there, and she rubbed his hand or his face and called him a "sweet little man" just like she did not long ago...

After almost everyone left, Jason pulled up a chair for me to sit closer to him. I sat there for a while with my chin resting on his casket and my hand on his side. I would take my finger and trace the outline of his lips, nose, and face, then I would hold his hands again... Finally, I decided to pick him up just one last time... I held my baby and rocked him again, then laid him down in his bed to sleep...

The Sound of His Life (Day 19)

2011-10-21T09:19:00.002-04:00

Thursday, October 20, 2011
Day 19

I was in the middle of writing that last post when I heard the phone ring. It was a little after 8:00am, and we were getting ready to go, and getting the room ready because it was the RMH's cleaning day. The children were downstairs in the kitchen getting something for breakfast.
"Oh, no!" I said out loud as Jason answered, "Please don't be the NICU..."
"What's he doing?" I heard Jason say, "OK, we'll be right there..."
Fear welled up inside me as I scrambled around to get ready.
"They said his oxygen is up at 100% and their bagging him right now, but his sat's are still down in the 20's," Jason told me, "We need to get over there now." Then he called the children's phone to tell them to come back upstairs because we need to leave.
I grabbed Hazaiah's clothes and blanket, and everyone else got what was needed, and we headed out the door.
"Oh- I need to tell them in the office here that our room won't be ready for cleaning..."
"That's OK," the lady had said, "You just go..."

We got to the NICU and walked into his little room- his special room they had given him after only being there a few days "for more privacy". How glad we have been for that room... There were so many people in there- the nurses and respiratory. They were fixing the monitors and trying to suction and bag him. I saw his oxygen saturation level at 20%. And I saw it drop down to 7%- all while they were doing everything that they normally do, but it just wasn't working the same...
"Let's get him in your arms," the NICU coordinator said.
I sat down then, anxiously wanting to hold him again. But...
"Oh Honey," I said to Jason, "I held him last night and you didn't get to. Do you want to hold him first?" I didn't realize this wasn't a "first"- there wouldn't be a "second" or a "next" this time...

We had our "plan" that we had worked out with the coordinator and the doctor:
All the children would hold him throughout the day yesterday, then Daddy and Mama would hold him today. Then we would give him a little sponge bath together while Heaven took pictures. We would dress him in his first little outfit that the girls had bought for him while he was still in my tummy. Then they were supposed to bag him as we carried him to the private room down the hall. -And there, peacefully and quietly we would remove the tube. I had envisioned him breathing on his own and defying all the odds that were against him...

But instead, here we were...
Hazaiah was being bagged while still attached to this breathing machine, and he wasn't doing very well. He was not ready for any kind of bath or dressing... I just held him close to me and cried. Jason was right next to me, helping me hold him, and I could hear all of our family crying and knew they were all gathered right around us. I was talking to my baby, thanking him for holding on through the night, and telling him it's going to be OK...
"Oh baby... I wanted to bring you home with me... I tried so hard sweetie... I tried so hard... But it's Ok honey... It's Ok... You're going to be Ok now sweet baby... You're going to be Ok... I love you so much..." My tears fell on his little head as I tried to wipe them away...

The NICU coordinator kneeled down next to me then, and told me that everything they are doing now is not working; Is it Ok if they remove the tube?
I knew it wasn't working, and I didn't want him to die with that tube in his throat. I nodded to her...

They gave him something in his IV first- something that would take his pain away. And then they began to gently wipe away the sticky stuff on his cheeks that was holding the tube in place. I held him the entire time, and watched as they pulled his little tube out...

My sweet baby took a few breaths, and then a larger gasp... I could tell he couldn't get the oxygen he needed and I cried out for him, "Oh God he can't breath... Please help him God... Please help me..."
My baby relaxed in my arms and we all cried together and I continued talking to him- pouring out all my words of love that I had for him, rocking him, rubbing him, holding him close...

I got to hold him still as they led us to the private room they had prepared for us. Jason had his arm around me- placed firmly on my back as we walked... They had pulled in more chairs for everyone, and I immediately found the rocker and sat down. The nurse got a tiny stethoscope to listen for a heartbeat...
"He does still have a faint heartbeat," she told me, "Sometimes their little hearts are so strong..."
I had him laying on my chest now, without all the swaddling clothes and blankets. He still had his "big boy" tshirt on, and I covered him with a blanket, but he was against my chest, my heart, and I could feel his head next to my neck and sometimes my cheek. I had longed to hold him like that for so long now...

The doctor came to listen again... There was no heartbeat anymore. It was 9:15am.

I don't know how long I held him there- rocking and talking to him as I continuously wiped my tears off of his little face and head. I held him close to my neck for a while, and soon his hair was all wet from the tears that had fallen... I started murmuring the song I always sang to him, "God Will Take Care of You", and soon everyone was joining in...

Finally, finally... I gave him to his daddy to hold... Jason cried and loved on his baby boy- there were no tubes in the way anymore and he could feel his little baby snuggled close to him now...

As the hours passed, the shock of everything slowly faded... Finally again, the children all got to hold their baby brother...

Soon the nurse came in and asked if we wanted to bathe him. He would go get a basin of water and supplies, and bring the overhead warmer in here, and we could all bathe him...
We did.
It was a joy to give him his little bath together, with the children all there and helping. We were so careful, and treated him so gently... Everyone wanted a chance to hold him wrapped in his little towel too... The childlife nurse came and let the children all help do his footprints and handprints, and she gave them a bear and a book... We put Hazaiah's diaper on him, and dressed our little boy in his clothes. Everyone wanted a chance to hold him in his little sleeper now, without the bulky blankets. He was so warm from being under the warmer- I liked that... Then I wrapped him up so cozily in his little blanket and snuggled him some more...

The hospital had arranged for a photographer from "Now I Lay Me Down To Sleep" to come and take pictures between 12:30 - 1:00, but we didn't know it was going to be like this; Did we still want him to come? We thought about it, and decided that yes, we would. So we had about an hour to wait.
I hadn't had anything to eat that morning, and everyone else was getting hungry, so some of the children went downstairs to get some food. Hazaiah's nurse came in while they were gone, just to check on us...
He sat down and talked with us a little, and we told him how grateful we were for all he had done. We thought it was special that our favorite night time nurse had him on his last night, and our favorite daytime nurse had him on his last day... He told us that he had stopped in yesterday, even though he wasn't working, and they told him what the plans were today, so it made it hard for him to begin work this morning- knowing what was going to happen...

"I knew you were planning to remove the ventilator today," he said, "But it seems like Hazaiah even took that decision out of your hands..."
I realized then, that our baby's name was again, perfectly suited. God had decided... We didn't have to choose when he would be delivered- my water broke and there was no other option... And we didn't have to live with the painful question of whether or not it was right to take him off the ventilator, for even the ventilator wasn't helping him anymore- God had decided for us...

The children came back with some food, and Modesty gobbled hers down quickly so that she could offer to hold the baby while I ate, and then Skye had a turn too... I ate quickly, but I needed him back in my arms...
We were all cleaned up and ready when the photographer came. He did a good job- he was pleasant and quick and took whatever pictures we wanted. We are grateful for their service, and look forward to getting the CD...
After that was all finished, the NICU coordinator came back in, and we asked how long we have until the funeral home representative came to pick him up...
"He should be here about 1:30," she told us.
I looked at the clock- it was moving too fast already... We gave each of the children another chance to hold the baby and say goodbye, and then Daddy held him again too... Heaven and Jasmin faithfully took all the pictures they could...

When I held him again, all the calmness that had come during the last few hours was escaping me- the clock was dangerously close to 1:30, and I wasn't ready to give him up yet... I snuggled him again, cried, and talked to him and sang to him some more. I kissed his hands over and over- those precious hands that I held every day; I could still wrap his fingers around mine, and it felt like he was holding on... I kissed his face- his sweet little mouth... I kissed his hair- his curly red hair that was all wet again from my tears... I tried to tell him everything I could think of that was in my heart- but how do you find words for that? There is no way I could fully express myself to him...

The clock went from 1:30 to 2:00, and the man had still not come- Thank you God...

I started calming down, and, a little after 2pm, he was there... He talked with Jason about some of the details, and Hazaiah's nurse was there with us... After several minutes, there was nothing left to do except give my baby to this man...

"What will you put him in?" I asked.
"I'm just going to carry him out in these blankets," he told me as he unwrapped them and held his arms underneath...

As I laid my little baby Hazaiah into his arms I told him, "Be sure to keep his hands up under his chin- he always likes them like that. And keep his right hand on top of his left because he has an extra finger there you see- and we like that..."

The man nodded and said that he would, and then turned quickly and went out...

"Oh God! My baby! My baby!" I turned back to Jason and just cried out in pain as he held me close to him, "I just want my baby... I just want my baby..."
"I know you do honey, I know..." He told me as he held me tightly, "That's because you're a good mama; I know you want your baby... It's Ok to want him..."
We cried for a while there, and then sat down, exhausted.

It was quiet for a long time, and then I asked him, "What do we do now?"
I didn't know that Hazaiah's nurse had still been in there, and the NICU coordinator was there...
There presence was a blessing to us. They had the perfect balance of being able to give direction when we didn't know what to do, and yet staying back and being quiet to give us our own family time. It was nice to know they were "there".
We talked to the coordinator for a while, she was not rushing us. She gave us some papers she thought may be of use to us, and she gave us all of Hazaiah's things that had been with him during in stay in the NICU. They smelled like him, and I love to snuggle up to his little t-shirt and blanket and Zaky pillow...
We left that room, we left the hospital, we went to the RMH and packed up and cleaned our room... They were very nice when we checked out, and gave us a little gift and told us to lean on each other and we'll get through this...
When we pulled up to the house, I couldn't get out of the car for a while... The last time I was here, I was pregnant with my baby. Now my belly is empty, and my arms are empty...
When I finally walked inside, everything looked so homey, so comfortable. Friends had brought food- that was so kind and thoughtful... There were pretty flowers and plants- that was so nice to see... Someone had written an encouraging message on our marker board- that was a blessing...

But something was wrong...

I realized then... There was nothing of Hazaiah's here. The smells were different, his pictures weren't up, I didn't have my "pumping station" set up, and he wasn't down the hall in his isolette...
Quickly I told everyone that I needed to get his stuff out- where was it? I got his box of things from the hospital, I got out his picture board, found my pump and set it up, and got his blankets together...
But I kept wandering around- there was something else. I couldn't think of it, but I knew there was something else that I had "up there" that I hadn't found since I'd been home- What was it??

I kept unpacking and putting our things away. Everyone was helping... When it was finished, I took a shower and got ready for bed, then went out to the living room to pump a little and visit with everyone before we went to sleep. I looked at the pictures on Heaven's camera and felt a little better...

But it wasn't until Jason and I were laying in bed that night, and I was snuggled up with Hazaiah's t-shirt, blanket, and zaky pillow, that I realized what I was missing...

What I had "up there" that I hadn't found since I'd been home was him...
I was missing my baby...

The Sound of His Life (Day 18)

2011-10-21T09:19:00.001-04:00

Wednesday, October 19,2011
Day 18

Today was "holding day" for all the children...

But first, Jason and I went into Hazaiah's little room by ourselves. Not more than a minute had passed before the nurse came in. Still no bowel movement- still desatting and needing to be bagged. She was a good nurse to him: taking care of him and talking to him in tones that showed she cared. Her movements and mannerisms reminded me of how she would take care of her own grandchildren...
The doctor came in then, and asked if we had a chance to talk through the night...?
We told her we had, and that we would remove the ventilator as soon as we could all have our own times with him. She seemed a little relieved, and began to discuss all that they want to do to help us through this. Since Hazaiah gets stressed with any movements, she suggested staggering the holding times into different parts of the day, so that he could handle it better. -perhaps two children today, one tonight, and two tomorrow?
Soon, the NICU coordinator came in and talked to us about how everything would happen.
We decided to let all of the children hold him in this room, so that he could stay attached to the ventilator, and they would allow us to all be together for each turn (normally only 2 at a bedside). Then tomorrow, Jason and I could give him a bath together, and we could dress him in his own little clothes and wrap him in his own little blanket, and carry him to a private room with more seating. (It's actually a patient room.) There they would remove the ventilator... There were many other things to talk about- all those details that go along with these times. They seem so unfitting when our baby is laying right before us, and we just want to hold him and snuggle him... But it was all needful...

After all was discussed, we were left alone with our little boy. He was still in his big boy crib- all swaddled up with only his head poking out. We talked to him like that for a while, but then I decided I would rewrap him with his little hands up by his face like he likes it. -He always puts his little hands up, always in the ultrasounds, and since he's been born. He has even put his fingers in his mouth a few times...:) Also, this way I could hold his hands again... So I wrapped him up, held his hands with my fingers, and watched him some more. He seemed more listless- not moving as much, not opening his eyes... Finally he did stretch a little, and then relaxed again. Our baby seemed so tired...
The nurse came in for her "touch time" and I had just pumped so I got to give him fresh milk again.:) She needed his diaper changed, so Jason got to do it for the first time. He did a great job, and looked like he was having so much fun talking to him through it all...

The children came then, for the first two to hold him. I had texted them and told them to figure out themselves who was going to go first. So Skye and Noah were ready...
Hazaiah did so well during Skye's turn- and she thoroughly enjoyed it.:) It was so sweet to see her finally holding her baby brother... After about 20 minutes, it was Noah's turn. Here was Noah holding his only brother- and Hazaiah being held by his only brother... I'm still getting use to saying I have 2 boys now.:) Hazaiah did desat a couple times with Noah, and the nurse had to suction him while he was holding him. We gave Noah a little extra time since his visiting was interrupted... We had thought to let Modesty have her turn too, if the baby was doing OK; but after the two desats we decided to just wait til the evening...

We went back to the RMH to eat supper and rest a little before the night visit...
When we went back that evening, Hazaiah's favorite nighttime nurse "P" was there.:) She was the one that said Hazaiah looks like he could be one of her little boys, and she seems to care for him just like he was...:) We asked how he was doing, and she looked a little sad as she told us about his desatting time, and how his blood pressure had dropped significantly, along with his heart rate. By the way she looked at us and spoke to us, we could tell it was something serious...
"Oh dear," we said, "Do you think he will at least make it through the night?"
"I just don't know..." she said.

We let Modesty hold him then, and the nurses decided to put his oxygen up, hoping that would keep him from desatting during this time. But after a little bit, the numbers started declining anyway, so they put his oxygen up to 100%. He did good then, keeping the oxygen saturation up in the 90's...
Since he was doing so well with it, we decided to let the older girls have their turn to hold him tonight, instead of waiting until tomorrow. Hazaiah did so well with all of them holding him, and it was so nice to see his sisters finally be able to feel their baby brother in their arms- they've only gotten to touch his head a little, or rub his leg, or hold his little hands...
The nurse saw the girls with their cameras and offered to take a few family pictures before we put him back. So mama got to hold him again, with daddy right next to him, and everyone gathered around... It was way past visiting hours for the children, so after all the holding and pictures, they said their "Goodnights" to the baby, and then went out in the waiting room to wait...
I was still holding him, and Jason and I were enjoying this time together. I asked Jason if he wanted to get the nurse to help put the baby back down, but he said, "Well they'll come back on their own after a while, you just hold him til they come..."
So I did.:) I snuggled him close and talked to him- telling him to have a good night and rest well and to please try to hold on until the morning and we would be back to see him then...
When we left, the nurse assured us that she would call right away if anything changed; and we told her we could be all the way back here in just ten minutes after she called.
We turned off his little lights and left; Hazaiah was sleeping comfortably, and all the numbers on the monitors looked good...

The Sound of His Life (Day17)

2011-10-19T09:48:00.000-04:00

Tuesday, October 18, 2011
Day 17

I called in this morning to arrange a time to meet with the doctor, late enough that we could visit with our baby first, but early enough to give the little girls time during their visiting hours. While I was on the phone with the nurse, I asked how Hazaiah has been doing...
Still desatting through the night, no bowel movement, but he was getting too hot in the isolette, so they put him in a "big boy crib" and he has on a "big boy t shirt". We couldn't wait to see him!:) We called the older children to tell them, and they demanded (in a good way) pictures texted to them from the cell phone as soon as we could...
When we walked in, sure enough- there was his little crib... But he was all bundled up so that all we could see was his little head poking out. No little toesies to hold, no legs to rub, no back to caress, and, worst of all- no hands to hold onto my fingers. I wasn't sure I liked this "big boy crib" after all...:/
After a minute the nurse came in and did a few things and then said, "Oh! -yesterday I forgot to ask if you wanted to hold him! Would you like to?"
Surprised we answered, "Of course! Sure! We just didn't think we were allowed to because of his ventilator."
"Well, I can move things around and I'll help you," she said.

I should've known that them suggesting we hold him on the same day we have a doctor's consultation is not a good sign...

I didn't think much about it though- I just grabbed the sterile gown to put over myself and sat down in the rocker. She adjusted a bunch of stuff, and then laid him in my arms... He felt so sweet... He didn't have as many thick blankets as the other time we held him, so I could feel how small his bundle really was.:)
But then, right after I got him, he started desatting again. They ended up having to bag him and suction his lungs right there in my arms... For the rest of my time holding him, I couldn't relax; I kept watching his monitors and watching him and hoping he was breathing alright... Jason sweetly reminded me that I was sitting in a rocker, and so I could finally rock him... I did then, and sang to him while Jason took a few pictures...
Soon the nurse came in to help us switch, so that Jason could hold him and I could pump before we met with the doctor. It was so sweet to watch Daddy holding him- his oxygen saturation stayed hovering in the 80's, beeping sometimes, but then coming back up. I took some pictures right before I started pumping, but I was again so nervously watching his numbers that I hardly produced as much milk as I normally do. The nurse was glad for it though- they like to give it to him fresh instead of getting it from the freezer.
Soon the doctor came in and told us she was ready whenever we were, so we gathered our things, told the baby we would be back soon, and walked out down the long hallway to the conference room.
We all sat around the table- Jason and I with the doctor across from us, the two interns on our right, the NICU coordinator (that came to our doctor's office while we were expecting) next to the doctor, Hazaiah's nurse over on our left, and the two counselors that had introduced themselves to me during that first meeting when they confirmed the Trisomy 13...

The doctor began her long speech, but I don't remember it word for word like I usually do. So I will paraphrase it here...
Hazaiah's carbon dioxide level is at 90%. A normal level is 30-40%. That means that even on the ventilator, he is not able to blow out all of that carbon dioxide. He is still not moving his bowels, so his liver is having to metabolize the nutrition through his PICC line, but it is not doing very well, and now they are worried about liver failure. The swelling (his weight is back up to 4lbs 6oz) and his staph infection are more indicators that his body is not reacting well to the medical help they are trying to give him. His oxygen requirements are going up, instead of going down; his lungs are not maturing, and one of them has deflated a little...

The doctor's words after all of this was said, "I know you wanted to bring him home from the hospital, and we have tried very hard to do that, but Hazaiah is not going to go home..."

I was taking very deep breaths during all of this, trying to hold myself back from crying. For some reason, I didn't want to cry in front of everyone this time- I usually don't care. But I didn't want to have to stop this whole conversation just so I could let out my emotions. I didn't want the counselors to try to comfort me, because then I would have felt obligated to thank them and acknowledge their efforts and attempts at consolation, when really, it wouldn't have helped... I didn't want the doctor to pause her speech because of me- just say what you want to say and we'll ask our questions...

I asked her what the difference is between our baby, and a baby without Trisomy 13- some newborns stay in the NICU for a month or two! -Why is this happening so soon? I don't want them to be giving up on him just because he has Trisomy...
She said the difference is that the babies that are in here longer are still being treated because their body is responding to the treatment. Or, it's just one organ that is having a problem, but Hazaiah's is multiple organs, and they are not responding well...

(I will interject this thought though- I have been very thankful that the entire staff does not seem to be blaming everything on Trisomy 13. They have tried to address each issue separately as it comes up.)

She then told us that she wants us to pick a day to have all of our children here, and let her know which day that is- within the next few days though. They would give us some privacy, and all of our family would be able to hold him, with the ventilator still in. Then they would remove the ventilator.
If we choose to not remove the ventilator, we would watch as the days progressed and his liver may fail, his heart may fail, his lungs may collapse, the swelling may increase, and he may bleed from his PICC line... Basically, his organs are failing.

"So, what...? What then? When the ventilator is removed...?" I asked.
"Well, sometimes babies are so sick that they only live for a few minutes," she said, "But sometimes it's several hours. Hazaiah's body is use to functioning below an optimal environment, so he may be one that lives for a little while after. But we want you to know that we will make sure he is not suffering, and not in any pain..."
Then she talked about the different gasps that people make as they pass away- trying to prepare us I guess...

I keep thinking of a way out of this. But death is a part of life, and it is not pretty... Death is our last enemy...
The doctor and interns told us that if we don't want to be there after they remove the ventilator, then we don't have to be; they assured us that they would hold him for us.
No Way! I thought. There is no way someone else is going to hold our baby during that time... I have been denied of so much with him already- it's all I can do, it's all I will have with him...

The doctor and interns excused themselves, and the NICU coordinator spoke with us for a few minutes. She mentioned about having the photographers from "Now I Lay Me Down To Sleep" come to take pictures, and talked about involving the other children in this "process".
Then she stopped, "How are you feeling?" she asked.
I was quiet. How do I explain how I am feeling?
Still fighting back the tears I told her, "I just want my baby..."
What else was there to say...?
After she excused herself, we were left with the two counselors. They assured us that they just want to help, and are here if we need them. But if they are in the way, to just say so and they will back off...
We let them talk, and responded as needed. As they left we thanked them for their encouragement...
We don't really feel like we need counselors, but we don't want to hurt their feelings, or be disrespectful either. We don't mind talking to them like we would talk to anyone else when we feel like it...

Then we were alone- this private moment where the tears flowed freely and we held each other. I won't go into the details here, but we were in there for a long time...

We realized that by the time we got the girls their visiting hours would be just about over, so we just decided to go back to the baby, and bring them back in the evening.
We stroked his little head and sang to him while we cried some more. He was on his tummy now, and for the first time I saw him trying to lift his little head and move it around. It was so cute... He seemed so "normal"- how could this little boy be the same baby we just talked about? He doesn't seem that close to death...

We walked "home" under the gray sky, with the with the rain drizzling slightly on our faces- it seemed to match our moods for the day...
We didn't feel like eating with everyone else in the dining room, so Jason took the little girls across the street to Subway and we just ate privately. The older children were on their way up from the house.

That evening we had all the children up to see him. They all took their "10min" visiting time and enjoyed him as much as they could...
We don't know yet what will happen. We don't want our baby to suffer- it's very hard to watch him desat just from his diaper getting changed... I guess we will see how tomorrow goes...

Thank you for all of your comments, emails, texts, calls, trying to visit (even though it usually doesn't work on our end), and prayers. Even though we can't answer all of them personally, please know that we read or listen to each one, and that you really have encouraged us- your support means so much to us.:) Thank you...

Oh, one more thing. They called in about the results for the cystic fibrosis and they were normal. Hazaiah does not have CF...

The Sound of His Life (Day 16)

2011-10-18T10:25:00.001-04:00

Monday, October 17, 2011
Day 16

I walked into Hazaiah's little room today and found him all snuggled up and resting comfortably. Taking a quick glance at all the numbers on his monitors, I rested slightly, seeing they all looked good for now. I had time to find his little fingers and sing him a song before the nurse came in...
"Has he had a bowel movement yet?" I asked expectantly.
"No, not yet," she replied, "I gave him some glycerin but it still didn't work."
"What about his breathing?" I asked again, "Has he desatted at all through the night or this morning?"
"Yes, he did a couple times," she said, "It's always during our touch-time when I evaluate him and change his diaper. But this last time I turned up his oxygen before we started and he did much better."
Then the doctor came in. "Well, not much has changed with him," she said, "His breathing rates are about the same, and he still hasn't moved his bowels. We'd like you to talk to your husband and see what day this week would work for us to all have a meeting about where to go from here... We'll be here all week; you can just let us know tomorrow..."
I nodded, and she left...
I turned back to my baby then, and continued singing, talking, and holding his hand... Some tears fell as I sang "God will take care of you", and several others...
After a while the nurse came in again and turned up his oxygen, "I'm getting ready to do his assestment," she said.
I watched as she changed his diaper- but there was still no poo.
"He sure knows how to tee-tee though!" she exclaimed, "He can fill up those diapers- his kidneys are working great!"
She gave me his syringe of milk to hold as it flowed down through his feeding tube. I had just finished pumping, so she used the fresh milk and he got it right away.:) As she went out to get something else for him, she turned her head and said, "Can you get me his temperature when you're done?"
His temp was fine- 36.9c...:)
He was resting well, and it was time for the children's visiting hours, so I left to go get the girls...
As soon as we came back, the nurse came in with another guy following behind her...
"The blood culture we took yesterday, because of the fever, came back," she said, "It showed positive for staph infection... We need to get another test done to be sure it wasn't contaminated, but it came back in less than 24 hours, so that is usually a more serious sign..."

Staph infection... That can be from anything, and it can be mild or extremely severe...
Then the nurse told me that the staph infection could be the reason he is having so many secretions, and it could be the reason he is having more apnoea spells lately...

Sometimes it seems like everything causes everything, and we won't ever really know what is causing what...

The Sound of His Life (Day 15)

2011-10-18T10:25:00.000-04:00

Sunday, October 16, 2011
Day 15

When Jason and I went in to see Hazaiah today, we noticed right away that he seemed to be resting comfortably. When his nurse came in to speak with us, and update us of how he had been through the night and this morning, we noticed he seemed pretty busy. The nurse explained that another one of his "friends" was requiring extra care today; we were thankful Hazaiah was doing so well and didn't need as much medical attention. It's kind of funny, but we're learning in this NICU that it's better if the nurses aren't all over him so much, because it means he's a little more stable than he had been...

He told us that all of Hazaiah's vital signs have been really good today and through the night. He did desat a few times, but he didn't need any bagging at all. The only problem was that he had developed a fever that morning, so they were running some tests to see why. With him not having a bowel movement yet, there is a chance that it had built up and ruptured again, and that he was septic. He didn't want to just give him some Tylenol to bring the fever down, and not know "why" he was getting a fever. The test results came back showing only slightly elevated levels. The nurse felt that if he was septic, the levels would be much higher. So now we wait 48 hours to see the results from the blood and urine cultures. It could be some type of infection, but they haven't started any antibiotics or anything.
So we just watched him, held his hand, and talked to him. He did do really well today- the monitors all showed his breathing to be fairly well, and better yet- he looked fairly well! (Trying to remember to look at the baby and not at the monitor.) His oxygen saturation did drop in the 80's a few times, but he got it up all by himself!:)

We came back in the evening with camera in hand because the night nurse had told us that we could help her give him a bath tonight...
But soon after we were there, the sensor for the "sensor flow error" came on. That usually just means that water built up in the connection line, and they would normally just unhook it and shake out the water. Well, this respiratory guy comes in and mechanically gets the catheter and suctions out his lungs! I have no idea why he did that- Hazaiah was not desatting... But right after he left, Hazaiah did start desatting- badly too...
In a minute the nurse was in there trying to help him, but she ended up needing to bag him. I tried to explain what just happened, but either she didn't understand what I was saying, or she didn't want to admit the guy messed up. Anyway, baby ended up being fine- but not without daddy and mama being shook up.
She changed his diaper then, and weighed him. His diaper was very wet, and he lost two ounces! That is good news because that means he is getting rid of some of that fluid retention all by himself!:) Then she listened to his tummy and bowels- she happily told us that she hears a lot of bowel noises!! They have heard either none before, or else one little tiny sound. Thank you God... Hopefully some stinky stuff is on it's way down!:)
She talked to us a little about his breathing. If his fever is related to some infection, then that could be why he is having more apnoea; however, if there is no infection, then the apnoea could be due to his Trisomy13, and may continue to get worse... We'll just have to keep loving him, being there for him, and helping him as much as we can, and let God decide...

I have a few pictures that go with this post, but the Internet at the RMH is too slow to load them at all... We'll take the computer to the hospital Wed or Thur and load them there...

The Sound of His Life (Day 14)

2011-10-16T13:20:00.000-04:00

Saturday, October 15, 2011
Day 14

Today, Hazaiah is 2 weeks old! Thank you, God, for two precious weeks with our baby...
We didn't wake up with any planned expectations today, but we at least hoped for a good day. We've been praying for him to go poo, and we know they are trying to wean him off the ventilator, so we've been praying his breathing would go well also. We just want to bring him home- to have the chance to hold him and love him like a normal family- just a few days at least...

Jason and I walked into his room early this afternoon.
"Hi, Hazaiah boy, Daddy and Mama are here to see you..." We start talking to him as we lift the cover off his isolette. We notice right away he is more swollen... We always start examining the numbers on his monitors right when we get in. Everything looked OK, but the amount of oxygen they were giving him was up a little. Soon his nurse came in.
"Has he had a bowel movement yet?" we asked.
"No, not yet," he replied. We were happy to see it was the day nurse that we liked... "But I am scheduled to give him another enema this afternoon, and hopefully that will help things."
"Has he desatted since yesterday?" we asked him. (oxygen desaturation) (The links are basic explanations.)
"Well, yes," he said, "He's had several apnoea episodes. They are becoming more frequent. It seems to happen mostly when we're changing him, moving him, and having our touch-time. I did have to bag him today as well..."
Our hearts sank. "Oh."
"He is on a little more oxygen right now, because he just had another episode..."
"What about the swelling?" we asked, "Is the cardiologist coming to see if it's from his heart?"
"Well, he wouldn't come until Monday," the nurse said, "But the baby is urinating well, so that's good."

The doctor came in then- always a "sub" doctor on the weekend it seems- introduced himself, and shook Jason's hand. Of course, the first thing they always ask is if we are aware of the Trisomy 13, and what that means.
We nodded, and Hazaiah's nurse intercedes, "They've done a lot of research on the Internet, and seemed to be well informed."
"Well, what are your goals? What are you working toward?" Doctor asks.
"We'd like to bring him home," we tell him.
"Oh, very good," he says, "We want that too; but sometimes, there is only so much we can do... We would like to be able to tell you what's going to happen, but the in the NICU things can change so quickly. We don't know for sure what's going to happen."
"We know," we replied, "One thing we realized with all of our reading on Trisomy 13 is that every story is different. We can't tell how ours will happen; we just have to see how he does..."
"He has had a big weight gain too," the doctor explained, "Babies should gain about 1/2 ounce a day at this point. He gained 2 ounces overnight. We're not sure why he is retaining so much..."
Hazaiah weighs 4 pounds, 5 ounces now.
The doctor left then, and we visited with our baby. Jason talked to him and held his hand more today, since he doesn't get as much time during the week now.
We noticed a trend with his oxygen saturation. It will drop down into the low 80's and make the monitor beep, but then he gets it up by himself. It will do that several times, and then drop so low that he needs suctioning or he needs more oxygen. So when we see those first couple dips, we start getting worried...

After more visiting with the baby, the nurse came in and said it was time for him to do his testing, change his diaper, and change his position. After he did a few things, he said he would turn him over, and that one of us could lift him while he held the monitor. Yay! This is so much fun! I had the chance once to hold him in this way- in my bare hands, just lifting him several inches while the nurse guided the breathing tube. It was hard for me to pass up the opportunity, but Jason hadn't had a turn yet, so of course I wanted him to do it...:)
He put him down then, and the nurse finished positioning him...
Suddenly, his oxygen saturation dropped quickly, and he wasn't breathing. The nurse calmly suctioned him, and then needed to bag him. I saw the two men from respiratory come in the doorway (they must've seen the monitors from their station) and asked what he needed. He said something about a saline bullet, and one of them left to get it while the other started helping.
The nurse was partially blocking my view of the baby, but he moved a little and I saw him...
His little arms were up in the air, and they would shake as he gasped for air. He looked a little like he had changed color, but I'm not sure what color it was. All I knew was my baby was laying there, struggling and fighting and trying to breathe, and they were helping him; but all I could do was sit there- 3 feet away, and not do anything...
Oh God how it hurt...
After several minutes things calmed down, and he was breathing steadily. Very steadily actually. But there was a "leak" with the breathing tube. That just means that some air is getting around the tube, because it is not a solid fit. But to go up a size would make the tube to big. So they watched the monitors for several minutes, and they seemed to show he was getting his breaths good.
The nurse explained that these machines can tell if the air is getting into the lungs, or if the air is just recirculating, and how much pressure it has, etc...
The nurse was calm through the whole thing, and I am grateful for that. He also apologized for perhaps stressing us out by seeing all of that, but we told him it was OK. It wasn't his fault...
It was hard to see, but every day we have with our baby is a gift, and we are thankful for it...
Hazaiah settled down then, and began to rest well. It was time for us to leave to go eat supper (visiting hours close from 6:30-8:00), so we did, and told our little boy we would be back later to tell him goodnight..

We came back a little after 8:00 and the night nurse we like was there.:) The day nurse had already told her about the afternoon... We asked her if he had desatted anymore?
"Well, yes," she said, "When I had to move him. But I didn't have to bag him though..."
"Has he gone potty yet?"
"No..." she said, "and his weight is up to 4 pounds 6 ounces now. He does seem to be having more apnoea episodes lately, and I asked J (the day nurse) if he thought this was the "beginning of him getting worse", but he said he just doesn't know..."
"Mmm..." we said thoughtfully, "Have you ever seen a baby with this much trouble on the ventilator, be able to get off the ventilator, and do OK?"
"Yes I have," she said with a smile, "I've seen babies have a harder time than this, and still get off and do OK."
That was good news to us...

We visited with him for a while then. He looked so comfy with his "Zaky" body pillow... Soon it was time to say goodnight and tuck him in... With several peeks under the cover to be sure he was still sleeping.:)

The Sound of His Life (Days 11-13)

2011-10-16T10:56:00.000-04:00

Wednesday, October 12, 2011 --- Friday, October 14, 2011
Days 11-13

I've kind of settled down into some sort of routine these last few days. Since the visiting is closed between 10-12:30, that gives me time to get some things done in our room at the RMH and then walk over to the hospital and be upstairs in the lactation room (a private room for pumping) by 12:00. I sit in there and eat my lunch, text Jason and talk to him on the phone when we're done eating, and pump my milk all at the same time. So by 1:00 I'm ready to go into the NICU. When I get in there, Hazaiah's nurse comes to his room to talk with me and, soon after, the doctor comes too, and gives me any updates.
I've been able to stay at his bedside pretty much all afternoon this week.:) I really enjoy just sitting there, singing and talking to him, rubbing his little head, and holding his hand- well, actually he holds my finger with his hand.:) One day he was holding two of my fingers, one in each of his hands, for hours... I did get a cramp, but it was totally worth it.:) I get to be in there when the nurses come to do their checkups on him, and sometimes I get to change his little diaper or hold his feeding tube while he eats. My heart aches to hold him, but it's all I can do right now...
The children are allowed to visit between 3:30-5:00, in only 10 min segments. (This is hard for them; they don't want to leave him either. Please pray for them with this if you think of it.) We usually leave the hospital around 5:30, but this week, every time I was ready to leave, Hazaiah would open his eyes and look at me! Of course I couldn't leave him like that! So I would rub his head and talk to him and tell him it's time to go night-night and that Mama would be back after supper and Daddy would come then too... After a while, he would go back to sleep, and I would cover his isolette and then peek several times under the blanket to be sure he was really sleeping! That usually extended my visit by another half hour or so.:)
The RMH serves supper every night at 6:30, so I would try to leave in time to walk back "home" for that. They are extremely generous! They have volunteers who bring in the evening meal 365 days a year, and any leftovers are free to use for our lunch the next day, or snacks, or whatever. They also have a pantry and refrigerator full of breakfast and snack foods for the occupants. We can do our laundry here too- and I was surprised and thankful to find that they are not even coin operated machines! Anyway...
Jason gets here soon after I've eaten, and in time to go back to the hospital for the visiting hours that start again at 8:00. We usually stay for about an hour- to check on him, see who his night nurse is, and tell him goodnight. -There have been nights that we've not slept well, and I've cried a lot, because we weren't comfortable with his night nurse. But his "main" day and night nurses are great! -and we are thankful for them...:)

These last few days, the doctor's reports have been about the same...
He still has not had a bowel movement, and they don't hear any bowel noises when they listen to him. Even if someone has not been eating for several days, they would still make gastric noises. So they have given him a couple harmless enemas, and have increased his milk, to see if that would stimulate him to go. We are hoping this natural approach will work, and that he won't need meds to move things through... He did have a few "clumps" of meconium in his large and small intestine, and now they are saying that they are still not sure if it could be due to Cystic Fibrosis, or if there is something else wrong with his bowel...

His biliruben went up to 18 again, but they said that the "jaundice" part of that is only at 9, and the other is because he has his main nutrition through the PICC line, and so his liver has to filter all of that.

He is still basically on 25% oxygen, and being given 25 breaths a minute. That is not enough to keep him alive, so he is breathing on his own more than what they are giving him. They are now trying to see if they can give a little less support, and wean him off of the ventilator. His oxygen saturation does drop at times, and they insert a catheter down his breathing tube to suction out his lungs. That usually gets him back up to above 95% quickly. I guess this is a little scary for me... When they remove the ventilator, I wonder what they will use to suction his lungs? The doctor and nurses say his secretions are still pretty thick and sticky, but then the doctor said they don't usually have problems with mucous in the lungs in a CF child until they are a little older. So we don't know if that would be a symptom of CF at this point or not. All we can do is wait on the test results for that I guess...

Hazaiah is also developing some swelling- especially around his neck. This is something new... The doctor is not sure if this is just due to him being immobile, or if it's related to his heart...

We were told on Friday to think of what day next week would be good to have a meeting with everyone in order to decide what our "plan" would be as far as removing the ventilator. He can't stay on it much longer because there is always the risk of infection, and they believe part of the secretions are being caused by his body reacting to this foreign object in his airway...

Please pray for wisdom for Hazaiah's mama and daddy with upcoming decisions...

The Sound of His Life (Days 8-10)

2011-10-13T11:42:00.001-04:00

Sunday October 9, 2011
Day 8
One of the nurses had told us they want to make allowances for any religious observances we may have; and that if we would like a pastor to come in for a baptism or for prayer, then it would be fine. (Usually only parents, grandparents, and siblings are allowed in the NICU.) We told him that we don’t believe in infant baptism, but if they allowed it, we would like our pastor to come and pray over him. He said that was fine…
Now we know that God hears our prayers just as much as He hears our pastor’s, but we want to share the blessing of our baby with whomever we can! -and the Bible says, “Call for the elders of the church…” So we invited our pastor to come up here on Sunday afternoon, to pray over him… It was such a joy to be able to “show” our baby to someone else- to point out his adorable extra finger, and his cute little 6th toe. We couldn’t see his little mouth and nose very well because of all the tape around the breathing tube, but at least his eye mask was off, and he even opened his eyes and looked around! We also pulled his hat back so he could see his curly reddish blonde hair (which is getting flattened by the hat). After a little while, they even let our pastor’s wife come in to see him- it was a special time for us…
Later we made jokes about other friends coming: “Now this is Pastor Tanya, Pastor Sharon, Reverend so-and-so….” Haha of course we wouldn’t do that, but it was a nice thought!
It was a blessing to hear him prayed for, and to see someone else appreciate his life, and bless God for it…

Monday October 10, 2011
Day 9

Jason went to work again today, but then it was raining (Jason’s wife likes rainy days!) so he couldn’t work the entire day, and ended up coming back here… The children and my mom were coming too, so we would all get a turn to see the baby. But in the end, Jasmin and Skye didn’t go in, because they thought they might be getting sick. (Thankfully they weren’t, but we’ve got to be extra cautious right now.)

When we got to the hospital, a new doctor introduced himself and said that he has worked with Dr R (Hazaiah’s pediatrician) for a long time, and that he was just filling in for him today. He went over his biliruben test with us, and said that he hadn’t had any more apnea spells, and that they were going to give him the barium today to see if they could find the blockage. He said that he was in agreement with Dr R, that they hoped to be able to get him stable so that we could bring him home. He told us they would only do a trache if it was absolutely necessary, but that his lungs were working- it’s just that he needs to remember to breathe. They were going to start him on caffeine as a gentle stimulant to see if he would breathe better. Still worried about the symptoms of CF, we asked him how the mucous was looking in his lungs and mouth.
“Well, he still has mucous, but there is a foreign object in his airways. If you or I had a breathing tube in for that long, our body would be making mucous like that too.”
Nurse K___ spoke up, “Yes but it’s really thick and sticky!” (CF symptom)
“Well, we’ll just have to see…” Doctor replied.
They had him in a different bed now, since they were able to take out the lines in his belly button (replaced by PICC line in his arm). This was one that closed all the way up, and had armholes on the sides. I couldn’t see him as well, but it helped to regulate his temperature better. He is still in the same private room though, so that is nice…
The doctor we spoke with seemed so much more encouraging. Maybe it was because he knew he was only going to see us that day, and so he didn’t want the burden of weighing us down with all the yuck stuff, but that was OK. It was nice to hear a more positive outlook, and to not have to worry so much, even if it was just for a day…

Tuesday, October 11, 2011
Day 10
This was probably the best day so far!
It was raining, but I had told my mom not to bring the children up today so they could rest, and the older girls had some shopping to do, so I would need to walk over to the hospital- hopefully in between rains. I finally got there about 1:00 (they close for doctor’s rounds between 10-12:30 anyway). I went in and sat down next to my baby. Usually when we get there the nurse comes right away to talk with us. But this time, no one came for the first hour! I just sat there with my hands in the holes of the baby bed, holding his hand and rubbing his head. I sang song after song, and talked with him all about my day, and Daddy’s day at work, and about his siblings at home…
After an hour, one of the counselors came in and asked how we were doing. We started talking about the different things Hazaiah was facing, and about the CF. Suddenly she stopped and told me, “Well, I’m a carrier of CF. Three of my sisters are carriers also, and my one other sister had the disease. We had her with us for 25 years, and she was worth every minute that we had together. None of my other sisters married someone who was a carrier though…”
Then she asked if the nurse had come in yet. Since she hadn’t, she went to find her. Soon the doctor and the nurse came in at different times, and they both had the same report:

They did the barium for the upper GIT and it appeared to go through the small intestine, but it ran out before it could complete the large intestine. (But they had done the large intestine via a barium enema.) So the results are “inconclusive” because they didn’t see a blockage. The doctor said that was encouraging, because if there is no blockage, then the main marker for Cystic Fibrosis is removed! I tried not to jump for joy at that news- we are still waiting for the test results… Also, he does still have thick, sticky mucous in his lungs; that could be another symptom of CF, but it could also be because there is a “foreign object” in his airway (the ventilator) and his body is fighting against it.
He is still not breathing completely on his own, and his oxygen saturation declines at times, but I think that is mainly due to the mucous.
His biliruben is at 14, which is still high, but the doctor is hopeful that the breast milk will help it. (He is currently just receiving nutrition through IV.) They are not putting the lights back on; we are enjoying seeing his face without the mask!

All of this sounded more encouraging to me! Especially the lowered chance of CF…
After the doctor left, and intern came and gave me a card and a blanket. She said they were thinking of our family and that she had crocheted this blanket for me, and the nurses had signed the card. It was very nice of them, and I thanked her…
After that, the regular nurse came in and told me it was time to change his diaper- Did I want to do it?
Of course! So I changed him, and then she told me to take his temperature, and that it was time for him to eat. She showed me where to unscrew the little cap thing, and then placed the syringe of colostrom on there. I got to hold the little syringe up as it flowed down into his tummy! It may not seem like much, and perhaps it is a poor substitute for real nursing, but it was all I had, and it thrilled my heart… I noticed him making little sucking movements as it went through his feeding tube past his throat, and I mentioned it to the nurse.
“Really?” she asked, “He did that? Well, at about 34 weeks is when they start figuring out how to suck, and he can feel the warmth of the milk in his throat, even through the tube, so he probably was…”
I was elated.
She continued, “You know you can pump your milk in here if you want; I’ll close the curtain…”
It was actually time for me to, so I told her that would be great!
And there, sitting in privacy next to my baby and holding his hand, I got to pump my milk…

I had a three hour visit with him that day!
Then I went downstairs to have a snack, and finally got to update this blog a little. It took longer than I thought, because the Internet service was full, and then the pictures took longer to upload, so by the time I finished it was dark. Jason didn’t want me to walk back “home” that late, so I waited til he got here to pick me up, and we went back to the RMH to eat, and I got to tell him all about my day…
Visiting hours started again at 8:00pm, so we went back up together to tell him goodnight and to see who his nighttime nurse was. Thankfully, one of our favorite nurses was there- she always has him looking so comfy, and she seems to take good care of him.

The first thing we noticed is that he had a different thing on his face to hold the breathing tube in. We could see his face so much better! There was no tape covering his little mouth, and he still had his mask off since he wasn't under the lights, so it was such treat to look at his sweet face!:) We visited him for a while, and then she was going to feed him again, so Jason offered to hold the syringe for her. It was so sweet to see Daddy take joy in “feeding” him! Satisfied, we stayed a while longer, and then told him goodnight and went "home" to sleep ourselves…

The Sound of His Life (Day 6-7)

2011-10-12T15:20:00.000-04:00

Friday, October 7, 2011
Day 6
When we got to the hospital that morning, we barely had time to say hi to the baby before the doctor came in, rubbed Jason on the back, and asked if he could speak with us in the consultation room. We agreed, and headed down the hall with him, Hazaiah’s nurse, and three interns…
He began going over everything in more detail this time, and we were able to have him pause after each section so we could get our questions in.
“Does he for sure have a blockage?”
“Yes,” he said, “We saw where there were calcifications on the xray, and the lower intestine was too narrow due to lack of use.”
“Is there a chance that when they clean out the blockage everything will look OK and he won’t need a colostomy bag?”
“Yes,” he said, “that is a possibility.”
We asked some more about cystic fibrosis, and about his airways…
“A lot of his respiratory problems could be due to him being premature, and not just the trisomy,” he told us.
“Will you give him as much time as you would normally give a premature baby to learn to breathe on his own?”
“Yes,” he said, “We have already given him more time. Usually we keep them on the ventilators for only 6 hours, and then remove it. We did that here too, but he got too tired and we had to put it back in.”
There were other questions and comments, but I don’t remember them all. We told him our other children were coming and that we would like privacy to tell them everything, so he told us we could use this same room…

We were finished then, and all began filing out. We were left in the room with just Jason and I, and Hazaiah’s nurse.
“Remember,” the nurse said, “He hasn’t been officially diagnosed with all of this. It’s just how the baby is presenting himself to us at this point that leads the doctor to make these assestments.” We talked to him for a minute and then went back to see the baby until the children got there.
When they came, we all went back into the room and went over everything with them. They took it really well, but I could tell they were disappointed about the confirmation of Trisomy 13.
It doesn’t matter how much we tried to prepare ourselves- it still is so heartrending to hear it confirmed… Until it was a fact, we kept hoping. I’m surprised at how much I really still hoped he didn’t have it- and how much it hurts to hear he does…

Saturday, October 8, 2011
Day 7
Today I woke up with wonderful expectations of celebrating Hazaiah’s birthday! He is one week old today! Thank you, God, for one week with him so far…
But the day did not turn out how I had hoped…
Jason and I went in that morning to see our baby. There was a new nurse there that we hadn’t seen before.
“Hi, I’m K___”, she said, “Look at his color! What do you think of this? I mean, he looks kinda bronze! -it doesn‘t look good…”
We looked then, and noticed his skin had definitely darkened through the night, but he still looked beautiful to us…

“What is his biliruben this morning?” we asked. It had gone down already, and they had turned the lights off, but they were back on again.
She told us the number and sure enough, it was climbing…
“I think his liver isn’t working right,” she said.
“They did the ultrasound on his liver, and it looked normal,” we told her.
“Well, he’s got all these Ivs, and they go straight through his liver; maybe his liver isn’t metabolizing them right or something,” she said, “I mean, that just isn’t pretty!”
I was a little shocked at her bluntness. I thought he was the prettiest baby I had seen in 11 years…
The other children were there now, and so Jason went out to get one of them at a time (only 2 people at the bedside allowed, and a sibling has to have a parent there). While Jasmin was in there with me, the nurse came back in and asked if the doctor had explained about Trisomy 13?
“Yes,” I told her, “We know he has it.”
“He’s had several apnea episodes today- Did he tell you about the life expectancy?” she asked.
“We already knew that some babies live a few hours, but some live a few years. 90% don’t make it to their first birthday, and some live a few weeks or months,” I answered.
“Well I don’t think he’s gonna make it that long,” she said as she walked away.
Gee thanks…
After a few minutes, I noticed he wasn’t breathing very well. His oxygen saturation level started dropping quickly. It’s supposed to stay between 96-100, but it went down to the 60’s, then the 40’s, and quickly into the 30’s!
“Quick!” I told Jasmin, “Call someone!”
But respiratory was on their way, and they walked in calmly and asked baby, “What are you doing little man? Here let me help you…” Then they proceeded to suction out his lungs through the device attached to his breathing tube. The mucous was all beige and thick. Thick mucous is another sign of CF.
The respiratory nurses were on each side of his bed, as Jason came in and Jasmin and I stood there. I saw one of them look at the other and shake her head, “Mmm, he is very critical,” she spoke softly as she looked back down at him.
I turned to Jasmin and motioned for her to go out. Strange, but at that moment I was worried we would get in trouble for having too many at the bedside. Maybe that was just the one area I felt I could “control” right then…

After a little longer, they said they needed to redo his PICC line, so we had to go out. I felt cheated out of my visiting hours, but we waited in the waiting room. We knew the visiting hours stopped at 6:30, and reopened at 8:00, but it was already 5:30, and we all needed to go eat. Jason went back to see if they were done, but they weren’t. Then my mom went back again, and they said they could stop for a few minutes to let us see him a little longer. Jason and I went in then, and he seemed to be resting comfortably. That was all I wanted- just to see him at peace before I could go eat. I didn’t feel hungry at all anyway- just weak…

We were supposed to all go “out” together that day- to sit at a table all together, away from the hospital, away from the Ronald McDonald House, to have a family dinner celebrating Hazaiah’s first week birthday. But it all sounded so stressful now. I didn’t want to go away, hardly felt like eating, and the thought of ordering food sounded confusing... We parked at the RMH and saw the picnic tables by the playground. Jason suggested my mom and the children could go get some food, bring it back, and we could sit out there in the fresh air together to eat. That sounded better, and I’m so glad we did it that way. It helped relieve some stress, and I enjoyed being with everyone.

At 8:00 Jason and I went back to say goodnight to our baby, and to see who his nighttime nurse was. She seemed pleasant, and Hazaiah was resting comfortably again…
She told us he hadn’t had any more episodes, and that they got the PICC line in right this time. So then we felt like we could rest a little easier…

We went “home” and cried, and talked, and cried, and finally slept a little…

Happy Birthday sweet Hazaiah boy…

The Sound of His Life (Day 5)

2011-10-11T19:06:00.000-04:00

Thursday October 6, 2011
Day 5
They cleaned the Ronald McDonald House today, so I had to be out of the room from 10-3:15. Jason and Noah went to work, so I waited on the porch rocker until my mom and the girls came to pick me up. We had to wait for the doctor’s rounds and consultations to be finished before we could go into the NICU.
Finally we were able to see the baby! It wasn’t visiting hours for siblings though, so just my mom came in with me. The nurse told me the doctor wanted to speak with me…

He came in. greeted me, and I noticed 4-5 other people trailing along behind him. I figured they were just his interns, or residents, whatever they’re called.
He sat down facing me on a chair, my baby was next to me in his little bed. He asked if Dad was here? Did we want the doctor to call him to have him on the phone for this consultation? Uh-oh, this doesn’t sound good…
I thought of a cell phone on a construction sight, and decided Jason would probably appreciate it better if I would just relay the information to him later.
“Go ahead,” I told the doctor, “I’ll talk with him this evening.”
He sat there with his arms folded across his chest, and started…
He uses all his big fancy words, and I have to stare at him to concentrate, and nod slightly to show I am following along. I’m learning with this doctor: He tells you what’s going on, what it could lead to down the road, and what all the next steps are- that leaves me not really knowing where we are NOW.

Basically:
Hazaiah’s biliruben is climbing again- probably due to a stool blockage. The blockage happened in utero and probably ruptured the small intestine. Then it sealed back over, but the rest of the intestine did not grow correctly, so it is too small. Because it happened pre-birth, any meconium that leaked out is all sterile. They did a barium enema, and thankfully the bowel did dilate with the barium in it, so it does work. After the remaining barium leaves his bowel, they will put more barium in his tummy to check the upper GIT to find the blockage. Once they find it, they will make an appointment for surgery to bypass the blockage and give him a colostomy bag. They would do this for any baby in this situation, regardless of whether or not he has a trisomy. If he lives long enough, they will reevaluate in a few months to see if they can reconnect and remove the bag.
That doesn’t bother me. Change a diaper, change the bag; It’s not that big of a deal…
At the same time, they would also put in a G-Tube for feeding, since he cannot nurse with his mouth. The G-Tube is favorable over the oral feeding tube because the feeding tube can come out so easily, and then we would have to learn to put it in; there is always the danger of putting it into the lungs on accident. The G-Tube is a tube that goes directly into his stomach via a stoma. -So I feel more comfortable with the G-Tube rather than the feeding tube.
The worse part about all of this is that somehow this blockage (called a meconium ileus) has an 80-90% chance of being a symptom of Cystic Fibrosis. That means that both Daddy and Mama are carriers of a recessive gene of CF. That means that any future pregnancies would have a 25% chance of the baby having the disease, a 50% chance of the baby being a carrier, and a 25% chance of the baby not having anything. A 25% chance of having something may not be extremely high, but when you look at what the life of the child would be if he did get it, it makes us not even consider having more children. Cystic Fibrosis would be a very sickly disease for a child to have. He would most likely be enduring some form of suffering his entire life. We don’t believe it is a risk we want to take. Every time our child got sick, the guilt would weigh so heavily on me…

This has been another blow that has been hard to bear. This is completely different from Trisomy 13 or 18. With a trisomy, it is so rare that it just kind of happens sometimes, and it is extremely unlikely to happen again. You do go through the pain of watching your baby suffer and eventually pass away, but it doesn’t affect future pregnancies. But to have a mama and a daddy together who both have a CF gene in their family removes all future hope of having any more children…
We had no idea of this possibility. As far back as anyone in our family knows, no one has CF. What are the chances of that?!? To have so many people, so many children, and to never marry anyone that also carried the CF gene? Apparently it’s pretty common for one partner to carry the gene… Many people do carry it, but it doesn’t affect them in any way, so they don’t know about it. It takes two recessive genes to cause the disease, and then there is only a 25% chance.
This just shows me again that for some reason God specifically gave us this to go through for some reason… True, we don’t yet know for sure that Hazaiah has CF- and we constantly pray that he doesn’t… But the meconium ileus is a strong symptom, along with thick mucous in his respiratory system- which they are constantly suctioning out…

Please pray for us as we face this unknown situation. This news would be hard enough to bear at a “normal” time; but right now, while our baby’s life is so fragile, to know that we could possibly never have another baby, is another weight on top of the grief we already have…

The doctor continued:
They switched him to another type of oxygen monitor. One that can tell how much he is breathing on his own. If there is some obstruction in his airways because of his cleft or anything else, they will put a trache in his throat in order to bypass the obstruction. They will give him time to prove that his lungs work first, and that he can breathe…

All of this is because they are trying to stabilize him enough to make the transition from hospital care to home care as easy as possible, so that he can go home and “die a peaceful death.” -Doctor’s words.
Because the Trisomy 13 was confirmed by the test results today.

The doctor rattled all of this off to me with his arms folded across his chest, his eyes staring straight into mine, and with all his fancy words…
As I heard the confirmation of Trisomy 13, my eyes glazed over and the tears started falling. I didn’t move, but my eyes diverted over to my baby and I just watched him.

The doctor continued in his same doctor voice, “Now you know we’ve been expecting this. We’ve been working up to it, and we knew it was coming. Our goals are still the same: we want to send him home with you. But there is only so much we can do.”
I kinda felt like he was telling me to “suck it up and get on”, but I just nodded and the tears kept falling and I just looked at my baby.
How I wished I could hold him tightly to me and cry with him in my arms and never let him go…
But there he was under the lights, with his mask on, connected to too many wires with a breathing tube down his throat; And this doctor talking to me in the most unsympathetic tone I had ever heard…
I didn’t really care though; I had my family who would listen and hold me and sympathize with me. We would go through this together. The doctor was just doing his job, and keeping his emotions out of it. It can’t be easy, but he does a good job… (I don’t mean that sarcastically either.)

He left soon after, and the other people that were there with him introduced themselves. Knowing the diagnosis, they were all counselors who had come in case I needed to talk…

Hazaiah’s nurse was the only one left then. This one was a male nurse- and we like his nursing style a lot. That horrible conversation with the doctor was counteracted by Hazaiah’s nurse telling me that it was almost time for his first sponge bath, and that if I was going to stay I could help him with it! I got to give him his first bath!
My mind quickly went through wondering if it was the right thing to do or not- kind of funny, but I wanted to be fair to Jason! He wasn’t there, and I would be doing it without him. But I knew (and I was right) that Jason wouldn’t want me to miss out on the chance, even if he couldn’t be there. I also thought about Heaven out in the waiting room- I should have pictures! But there wasn’t any time for that; I would just enjoy my baby and hold this memory in my own heart and mind…
The nurse lifted his little head up for me and I washed all of his curly reddish hair. It was so cute! -And it got curlier with the water!:) Then I washed his upper body and arms, his legs and feet, and then he pulled him over for me to do his back. There are no tubes or wires on his back, and it was so precious to rub him down… Lastly, the nurse took off his diaper and there was a little poo! Yay! (get that biliruben out) He wiped it a little, but left some dirty for me.:) His little bum is sooo tiny- almost like his legs extend straight up to his back! I let the nurse put his new diaper on- Hazaiah still has lines going into his belly button, and we need to be very careful with those, so I was a little scared about bumping them with the diaper. But after I watched him do it, I realized he was a little rougher than what I would have been, so I feel confident I can do it next time!:)

Hazaiah did so good through all of it- his oxygen and heart rate and all that… And it was so comforting to be able to care for him and show him my mommy love after all that hard news from the doctor…

I tried to act normal when Jason texted me after work to tell me he was on his way home, but he can always tell when something is not right, even through a text. I told him I would rather tell him when he got “home” because the cell phones are so fickle. I know he prayed a lot on his long drive back to the Ronald McDonald house. When he got there, I tried my best to explain everything to him. It was pretty hard for both of us. We pulled ourselves together and went back to the hospital to see our baby…
The nurse that let me help with the bath was already off of his shift, but he left a bunch of papers for us. They were all filled with information on each of the things that the doctor had went over with me, but they were simplified and detailed, and we had it all there in writing so we could go over it by ourselves…
After a while, we went back “home” and read over the papers and formed our questions for the doctor. Jason decided not to go to work the next day; the doctor wanted to talk with him anyway…

The Sound of His Life (Days 1-4)

2011-10-11T18:43:00.006-04:00

Sunday, October 2, 2011
Day 1
I woke up several times that night. By morning, I noticed the most unusual hunger- goodness I could eat! My legs were starting to swell: I guess from all the fluids and steroids they gave me…
As soon as we could, Jason wheeled me back over to the NICU to see our Hazaiah. They had his breathing tube out, and said he had been breathing on his own for about an hour. We looked at his chest- he was working pretty hard… They showed us the monitors and explained what everything meant, but said that we should learn to just look at him because when we go home (that beautiful phrase!) we won’t have the monitors.
It was time for doctor’s rounds then, so we had to leave.
When we came back, he had a nasal breathing tube in his mouth (because his nose and mouth are all connected) but that didn’t work to well. They said that it was so open that the oxygen got too diluted with the regular air and wasn’t sufficient. So next they put him in one of those oxygen tents. That seemed to work for a while…
We continued wearing out the hallway from our room to the NICU all day Sunday. They wouldn’t do any testing until Monday…

Monday, October 3, 2011
Day 2
We walked in the NICU that morning, and looked where our baby had been- he wasn’t there! Instead, they had moved him to an isolation room. He didn’t need to be isolated, but they wanted to give us more privacy… He was also under the lights to try to control the jaundice he was getting. That meant they had to put a mask over his eyes, and we could see less of his face.
The doctor came and spoke with us. He is very straightforward and unemotional. He has a lot of knowledge though, and explains everything in a very matter of fact way. He told us they sent off the test to see if it’s Trisomy 13 or 18 or whatever. They did an echocardiogram and it showed a large VSD in the bottom of the heart and a small VSD in the top of the heart. They are not now causing any problems, and will fix them at 4 months and 2 years respectively; only if he doesn’t have a trisomy. If he does have Trisomy, the risk of surgery is too great, and the surgeons won’t agree to a surgery. But they will give medications… Of course this brings tears to my eyes- it just seems so unfair. What about an evaluation at 4 months to see if he is stable? I decide not to think about it for now, and just be glad it’s not an immediate concern…
They also looked at his kidneys, liver, and brain; all appear normal.
It wasn’t a pleasant consultation; however, just as we finished, the nurse asked the doctor if he objected to us holding him, as long as they helped hold all the lines and wires and tubes?
“That’s fine,” he said.
My heart nearly burst in my chest- I’m gonna hold my baby!!!
I sat in the rocker and they laid blankets over me and put a pillow under my arm. He had so many wires and had to stay so wrapped up, but they put him in my arms…
I started crying from the sheer excitement of it, but made myself stop because I couldn’t see him through my watery eyes, and I didn’t want to miss this moment! We had to hold an oxygen tube blowing into his face, but at least he didn’t have his mask on anymore and we could see his eyes. He did so good, and I held him for so long… The nurse came and took a few pictures of us, and Jason tried to get some with his cell phone.
My legs had continued to swell after delivery- just because of all the meds. It was so bad that it made me off balance and I could hardly walk anywhere. After sitting in the rocker holding him, I could tell they were getting worse, but I didn’t want to get up… I flexed my feet and tried to elevate them but finally I had to give in… But that was OK because now it was Daddy’s turn to hold him!

He did so good with Daddy too. It was such a special time to see my husband holding his baby boy… I had a good view of Hazaiah’s hair now, and I could see it was reddish/ blondish/ brownish and it was curly! We had all wondered what his hair would look like- many times we discussed the different varieties he could have, but we didn’t think curly was an option! It is completely adorable…

After a long while the nurse came back in and I thought she was going to put him down in his bed; but instead she asked if it was “Mom’s” turn again. Yay!! I was glad to hold him again- my swelling was still there, but I could manage!;)

After a while they did put him back in the bed, and we had to go again…
The nurse called later to say he needed 100% oxygen and that they had to put the breathing tube back in…
When we went back in that evening, he looked relaxed and calm. The breathing tube was good for him… He held my finger with 6 of his own and looked up at Daddy while Daddy talked to him. Eventually he fell asleep…

How we’re doing now:
Jason is needing to work soon, but he is doing great even being cooped up in these little rooms. He always helps me so much (since I can still hardly walk or get up) and he is always cheerful and encouraging. I would fall apart if it weren’t for him!

I started pumping and am getting colostrom, (sp?) though they are not feeding him yet. My recovery (aside from the swelling) is doing great. I get tired sometimes, but don’t really “feel” physically like I just had a baby!

Tuesday, October 4, 2011
Day 3
We took more milk to the baby this morning. The doctor was there and told us that, even under the biliruben lights, his number is too high. He is at 18 now, and if it goes to 20 they will need to do a blood transfusion. Eighteen wouldn’t be terribly bad, except that Hazaiah is only 3 pounds. He hasn’t passed his meconium yet, so that’s probably why it’s so high.
His oxygen was set at 60%; if it continues like that, they are looking at premature lung disease…
He was laying on his side and we got to rub his back. He is so soft…

Dad’s eyes are bloodshot, but he is still so helpful and happy.
Mama walked all the way to the NICU without a wheelchair, but is still wobbly.
Took a shower and picked up a little- now worn out.
Both of us need a nap…

We went to the Ronald McDonald house. It is so very nice, and they gave us the only room that has a separate living area with a mini fridge and microwave- huge blessing!
We had a good nap and went back to the hospital.
Hazaiah was so calm that I asked if he was sedated. He wasn’t. They just said they hadn’t poked him or bothered him much that afternoon. His oxygen was down to 35%- yay! (That means that’s how much they’re giving him.)
The nurse called us later to tell us his biliruben went down to 15.8- good.
We went to sleep around midnight…

Wednesday, October 5, 2011
Day 4
Jason and Noah went back to work today, after having to wake up at 4:00am. -praying for strength for them…
The girls and my mom came and took me to the hospital to see the baby. Siblings can only visit during certain hours though. Well, all of us can only visit during certain hours, but it’s even more restricted with the children…
The doctor briefly told us that his biliruben was up to 16.5- still out of danger, but not going down as quickly as they want. He is still under the lights. I miss seeing his little eyes…
We went and got some lunch and I took a much needed nap. When we came back, I took Skye in with me first, since we can only have two at a bedside. His oxygen was down to 26% and doing good with that.J He was very restful, and they thought he may have had a small smidgen of meconium. If it doesn’t pass soon, they will do a barium enema and look for blockage…
The nurse told me they are starting to give him milk now- and they happened to be ready to give the first one right now! All they did was give 2ml by gravity through his feeding tube, but it was thrilling to me to see my milk going in his little mouth for the first time ever! Thank you, God…

After that, the nurse asked if all the siblings were here. I told her just the four girls were. She told me to go ahead and bring them all in and she will close the curtain and give us some privacy!!! It was so special- she turned off the biliruben lights, took off his mask so we could see his face, closed the door and went out. We even got to stay 15 minutes past visiting hours. We all gave him little touches and rubs, took pictures, and sang songs to him- it was such a treat!
Later, the girls and grandma left, and Jason and Noah came “home”.

We got to go see the baby again, and Noah was so happy when his little brother squeezed onto his finger!

It was a wonderful day…

The Sound of Labor

2011-10-11T18:17:00.003-04:00

Wednesday night, September 28, 2011.

We were laying in bed talking around 9:45 that evening. I rolled over on my back and noticed how far the baby was sticking out. Smiling, we said something about the position he must be in, then I started to turn over onto my side…
I heard a little “Pop”, but before it could even register as a sound in my ears, I felt warm fluid pouring out all underneath me.
“Ohhh, my water just broke!” I told Jason.
He quickly got up. “Are you sure?” He asked, “What do we do?”
“I don’t know… Get me the phone and I’ll call the doctor.”
My water had never broke so calmly before. Whenever my water breaks I am usually in the midst of hard labor, and one of the children actually pushed the water bag partway out while still intact! So I lay there, dreading the hard contractions that I was sure were on their way. But they didn’t come, and I called my doctor’s office.
Now my doctor is still in Alaska at this point, so they told me to call labor and delivery at the hospital.
“Is this your first baby?” they ask.
“No, my 6th.”
“How long are your labors usually?”
“Between 1-3 hours, and I’m only 32 weeks right now.”
“Oh. Well I suggest you go into your hospital there to see if you are stable enough to make the trip over here first…”
So a quick check-in at our local hospital showed that I was only dilated 1cm, and that I was fine for transport. But- they would have to send me by ambulance since I was already there…
Jason followed behind in our suburban and was right there beside me when they pulled me into the hospital. They put me in the “triage” room, and I’m not sure what that means, but the room was tiny, had a lot of machines, and was right next to the nurses station for monitoring.
They loaded me up with an IV filled with magnesium (to depress my body and ward off contractions, and also to help the baby’s brain since he was so early), gave me a steroid shot to help baby’s lungs, fluids (just cause I guess we need them {they weren’t letting me eat}), and also an oral medication to stop any impending contractions. And they told me I was not allowed to get out of bed.
I didn’t sleep much at all that night- maybe two hours. They checked my cervix the next morning (Thursday) and I was dilated 2cm. But I was not having contractions, and the risk of infection was so great because of the membranes being ruptured, so they said they would not check any more, unless I was having contractions or felt pressure.
But even on the meds, I would have a sporadic contraction here and there- nothing painful or regular…
Thursday night they gave me a sleeping pill and I was able to sleep even through pokes and prods from 9pm-3am. But I woke up feeling so stressed from all the things attached to me that I knew I wouldn’t take another one.
Friday they put us in a labor and delivery room. I was still not in labor, but didn’t need the constant monitoring that the triage room provided. The l&d room was so much nicer- more spacious for all our family to fit, and a nice, comfy, bed for Daddy to sleep in.

During the day, I noticed some contractions here and there, even though I was still taking the pills to stop them. But they still weren’t painful, I would just sometimes need to take a breath through them; and they still weren’t regular. The monitor would never even pick them up- not giving me credit! But we started noticing baby’s heart rate would drop slightly during the contractions. They started noticing the “dip” and that’s how they would read the contractions. I began to worry if he would not tolerate labor well…
Friday night was another non-sleeper. Everything is always more frightening at night, especially if you’re already tired. I started having a few more contractions, and I worried because I knew the monitors weren’t picking them up, and I couldn’t see the screen to see how low baby’s heart rate was. Finally a nurse came in and gave me some Tylenol.

That seemed to work great to calm me down- my whole body relaxed, the contractions stopped, and I slept deeply for almost three hours…
Saturday morning was pretty much uneventful. They started letting me eat, so that was nice.J They gave me my last dose of “contraction stopper” and told me that they would induce labor on October 10th. I would be a little over 34 weeks by then, and they don’t want me to go past 34 weeks because of the risk of infection, but since I would actually turn 34 weeks on the next Saturday, they would wait until Monday because they are “short staffed” on Saturday.

But today was Saturday too…

They brought my supper in and I sat up to eat. It was almost 6:30.

I was usually having a few contractions whenever I would sit up to eat, and I did again this time; but they were so mild that they didn’t bother me at all. Then they would go away when I lay back down. These were just slightly uncomfortable, but the food wasn’t that great that night, so I finished and lay back to visit with everyone. All our children and my mom were there too. Sometimes I would stop and take a few deep breaths during contractions, but they were so short… Any other time I was in labor, I couldn’t stand to have anyone talk or move around me, but during this time, the children were laughing and the room was full- it didn’t bother me. So I figured these few, irregular contractions would stop soon just like all the other times.

They left around 7:30. As they walked out the door, a few of them stopped and watched me. I was having another one, this one a bit harder, but not too bad…

A little while later I felt a slight pressure in my lower tummy…
“Honey,” I said to Jason, “I think we should tell the nurse I feel a little pressure. It’s just a little, but I want to be extra cautious.”
I actually felt silly calling the nurse in to tell her what I was feeling. I obviously was not in very much pain, but I knew that monitor still wasn’t picking up my contractions, and I knew his heart rate was still dropping in the middle of them…
She came in then, and watched me for a few minutes. She stood there for about 5 minutes and noticed I had three of them. So she called in the doctor. The doctor decided it was time to check my cervix again…
“Oh… Yes, she’s dilated,” the doctor said quickly.
“When do you usually move people to the delivery room?” I asked.
“No, you’re not going; You’re going to deliver right here,” she said, and quickly started scrambling around.
“Oh? Well how far along am I?” I asked.
“You’re complete.”
I heard her then yell out the door, “I need a STORK team here NOW!” (That’s the emergency NICU people.) Then more people came, more scrambling, more demands for necessary equipment.
But I don’t remember all of that- I remember she turned and looked at the monitor for the baby’s heart rate and said, “OK I need you to push him out right NOW. Don’t wait for another contraction. Just push him out.”
I pushed, and felt him coming…
There were so many people around. I couldn’t see my husband, but he was there.
I pushed again, and his head was out…
They grabbed my legs and told me to keep pushing.
One more time, and he was out…
So much scrambling. I couldn’t hear him crying…
“Breathe baby! Mama wants you to breathe!” I started crying, “Oh God, help him breathe; please help him breathe…”
They quickly cut the cord and whisked him away. They had none of the equipment they needed in that L&D room. All I saw was a tiny red form on the sheet; I never saw him…
They showed Jason where to go to watch them with the baby. He heard him cry- loudly. It was no weak cry! They had to use the bag to help him continue to breathe though, and they needed a tube. They kept trying, but the tube was too big. Finally they knew they had to take him straight to the NICU.
Feeling helpless, Jason came back to see me and told me what they were doing…
“Oh honey,” I told him, “I didn’t get to see him…”
“I saw him honey,” he said, “He was a little gray at first, but when they got him breathing he got his color back. He’s so cute honey…”

A NICU nurse came in after a minute and held my hand, “We got a cry and a heartbeat and they’re taking him to the NICU now to try to get the breathing tube in.”
“Thank you,” I told her.

The doctor was working on my placenta and she looked up at me and said, “I’m very sorry you didn’t get to see him. I’m sorry…”
After a short dose of pitocin, and some cleaning up, they told me I could see him if he was stable enough. So one hour after birth, they wheeled me over to the NICU, and I saw my baby…

He was so precious, so beautiful, and so tiny…
He had so many wires and tubes attached to him, but when I looked carefully, I noticed that most of them were just monitors- not needles. He had an IV in his hand- just like mama.J And they were going to put in the lines in his belly button. But the one thing that I knew must be uncomfortable was the breathing tube in his mouth…
The doctor spoke to us and told us that they would leave him on the ventilator over night, and hopefully be able to remove it tomorrow. She mentioned something about the different anomalies he had. Yes, we were aware of them…
“Oh but is his palate cleft?” I asked.
“Yes,” she said, “It’s all completely open in there.”
-A nurse later told me it was probably the worse cleft she had ever seen… God?

We talked to him and touched him for quite a while. He was just so sweet…
Every ounce of my heart wished I could pick him up and hold him close and never let go. This was so unnatural. But this was the way of life for now…
Daddy leaned over his face and he opened both his eyes and looked right at him!
-Thank you for that, God…
We slept for the first time without our baby that night…

Hazaiah Jude

October 1st, 2011

8:30 pm

3 pounds 3 ounces

16 ½ inches long

Reassuring Sounds

2011-09-22T09:17:00.002-04:00

I lay in bed this morning for a few more minutes, enjoying all the wiggles and kicks from Hazaiah...
It was just yesterday morning I woke up worried, after not sleeping well the night before. After a busy day on Tuesday, I noticed I hardly felt any movement at all during the day. Baby's normally hard interrupting-whatever-I'm-doing-and-not-going-unnoticed-kicks had not bothered me at all that day; and through the night, the only thing that woke me was my own awareness of him not waking me... Even when I purposely lay in my pre-pregnancy favorite position of half on my tummy and half on my side -the position he has assured me by his persistent kicks gives him no room of his own- only resulted in a little squirm of surrendered "I'll move over and make room for you Mama" all through the night.
Following that restless sleep, we had to leave by 6:30 in the morning for our doctor's appointment yesterday at 8:00am. I was glad we were going again. They would do an ultrasound to check for the growth and the S/D ratio, and then another non-stress test to see how he reacted. I was hoping for some reassurance from his abnormal quietness, but I was also thinking through every possible scenario of what could happen... During the entire car ride, even after a glass of orange juice on the way, I could only count 3 definite movements. (You are supposed to be able to count at least 10 in an hour, and usually it only takes me about 10 minutes to reach that much!)

Upon arriving, we signed in and sat down to wait. Thankfully, we were called back within a few minutes, and they took my weight and blood pressure. Then they walked us back directly to an ultrasound room. Usually we have to wait in another waiting room for the ultrasound, so it was nice to go in right away. As she prepared her equipment, and my tummy, for the exam, I told her he had been so quiet ever since yesterday. The screen came on and Jason saw she immediately went to his heart: there it was beating away! I was relieved, but I knew that wasn't the final answer. She also noticed he was more still than usual, so she wiggled him a little, and kept looking for measurements. Suddenly he seemed to wake up! He does get active during those ultrasounds- where they poke and prod and push so much.:) She made a comment about him "Gettin' feisty!" and said, "Maybe he was just restin' up for his exam..." I don't know what it was, but I know his movement has been back to normal ever since, and I am glad!:)

We are getting use to looking for certain things during the ultrasounds- we are definitely not experts, but the desire to "know" for ourselves how our baby is doing has caused us to strain a little harder than normal to pick up on things we would normally just "leave to the experts". As she measured and recorded, we watched the numbers for each of the body parts. I saw that on many of them, I was still only measuring around 29-30 weeks. I knew she would combine all of these measurements to give us an estimated weight at the end. When she got to the umbilical artery, we again watched carefully. This number doesn't come up as one solid measurement; instead, it flashes and changes as the heartbeat and bloodflow through the cord is recorded. There are other measurements besides the S/D ratio being recorded at the same time, so it gets a little confusing, especially when she takes so long, does it over and over, and then seems to re-record the same wave.
Our thoughts tumbled around,
"Uh-oh, I hope nothing is wrong."
"Why does it seem to be taking longer?"
"Is that the same thing she keeps bringing up again?"
We continued watching the peaks and valleys of the graph, and observed the numbers flashing and changing at the bottom. We didn't want to "over-hope" but we both thought the numbers next to the S/D ratio were, on average, lower than last time! We saw some that said 3.5, 3.7, 4.2 and then some that flashed 8.7, 10.5, 11.0! Thankfully, those extremely high numbers were only once, and very brief; but on average, we thought the numbers seemed to stay around 4-6... (She doesn't tell us the final number though, the doctor does later.)
Finishing the exam, she announced, "He weighs 2lbs 14ounces."
My forehead creased as I cleaned the gel off my tummy and thought hard, "What was his weight two weeks ago? -2 lbs 5 ounces? or 9 ounces?" Either way, I could tell he hadn't gained much... We were really hoping he would at least get to 3 pounds by now. (I think the average is 3.75.)

We were then seated in the second waiting room, to wait for the NST. While we waited we texted the children at home to let them know how we were doing. I asked Heaven to look at the previous report to see what his weight was last time, and she replied it was 2 pounds 9 ounces. That meant that during the time he should be gaining about a half a pound a week, he had only gained 5 ounces in two weeks! Jason and I talked about it for awhile, and thought about how very tiny he would be... Jason commented that whenever he sees a little newborn, weighing maybe 8 pounds or so, he always thinks, "Wow! They're so little when they're born!" So it's very hard to imagine what our little less-than-three-pound baby looks like! We talked about babies that we have read about lately- babies with IUGR just like ours- and how some of them are born at 26-28 weeks(!) and only weigh 1 1/2 pounds(!) and still end up doing OK... But we know it's different: The babies we've read about don't have IUGR that is caused by a chromosome disorder... We know that little Hazaiah needs all the time he can get in the womb to let his organs grow and mature in order to fight against the possible Trisomy 13.

We were then taken back to another room for the NST. Since we know what "looks good" on those tests, it's a little more relaxing. So far they have all been good... We're not sure exactly what it would look like if he was under any stress! But there were his results: A steady heartbeat that increased slightly with movement. The doctor calls this result "reactive".

Then it was off to the final room to wait to talk with the doctor... After a few minutes, he came in, seemingly chipper as ever. Judging by past experience, this is usually a good indicator of the results from that day's tests. His attitude usually portrays his findings...
"Well," He began, "Everything looks pretty good! The number for the S/D ratio has decreased significantly! And, as you already know, I'll be gone out of town for the next 10 days. I was going to have Dr K perform the NSTs while I was away, but the number looks so good that, unless you get frantically worried, I don't think you need to be seen until we are back here in the office on October 3rd!"
"What was the S/D ratio?" we asked.
"4.96," he replied with a smile. (Did I see a bit of wonder on his face? -or was it just the anticipation of his vacation?)
"Wow that's great!" Jason and I both were relieved, excited, and thankful...
We began talking about what to do if something happened while he was gone, along with some other questions and things to discuss. It was all very casual, friendly conversation. He really didn't seem worried at all! We were almost finished when I remembered the weight.
"Oh wait," I said, "I noticed he only had a 5 ounce weight gain in the last two weeks..."
"Yes," he replied, still with a smile, "But we don't really go by each slight change in measurements from test to test. The estimated fetal weight gives about a 10% room for error, and when the tests are closer together (the last one being only 2 weeks ago) the possibility for error is even greater than 10%. What we look for instead, is a trend in the tests: We go back to the first one taken and see if his weight is indeed falling behind each time, instead of what the actual weight is estimated at each time. -And, unfortunately, we do see a trend here: His weight is definitely falling behind; however, because it's probably due to a chromosomal disorder, it's going to be best to try to keep him in-utero as long as possible, to let his organs, and especially his lungs, develop."
My heart sank, just a little, with those words... I know the possibility for Trisomy 13 is very real, and very great; but simply because we haven't had an amnio to prove it, and I know our God is greater than any ultrasound and filled with mercy, there is still a part of me that hopes he doesn't have it...
"So," the doctor continued, "as long as all the fetal testing is going well, we will continue to postpone delivery until necessary..."
With nothing more to discuss, we collected our things and started towards the door. After we all walked out, we told Dr B to have a nice trip- wherever he was going... He smiled and told us he is going to Alaska to visit his daughter who is expecting twins soon! We could tell he was looking forward to it, as he happily told us how this will be numbers 3 and 4 for her...:)
After those words, we stood there at the counter to make arrangements for the next appointment- 12 days later! I will be 33 1/2 weeks along by then!

We are so thankful for this wonderful answer to prayer. Just two weeks ago, the S/D ratio was a dangerous high of 7. After a prayer-filled baby shower, along with many, many prayers from others, the number has dropped first to <6, and now <5. We know that it is still high (it should be under 3.5), but it is such a significant difference; And even the small, 5 ounce weight gain is not an immediate concern; We are so grateful!
We are continuing to pray that the S/D ratio stays on the low side, and that he will receive the nourishment he needs to gain weight during the next few weeks...

Thank you so much for praying for us and our little Hazaiah...

31 Weeks

2011-09-16T07:54:00.001-04:00

We've had three non-stress tests since the last visit to the specialist. Those tests consist of laying down for 30 minutes with two monitors strapped around my tummy: One to measure the baby's heart rate, and one to measure any uterine activity (contractions). Whenever the baby moves, his heart rate should increase, just as whenever we move, our heart rate increases. This shows that the brain is getting enough of what it needs to tell the heart to do what it needs to do, and that the baby is not under any stress in his environment.
At first we thought, "Why is it called a 'non-stress' test? Is that just wishful thinking?":) But then we found out what a "stress-test" was, and realized that a "non-stress test" is called that because the baby is not put under any stress in order to do the test.:)
All three of our tests have turned out great! Everything that gets monitored is working how it's supposed to! So that means that, so far, the elevated S/D ratio is not causing major problems, and baby can stay inside until the next test...:)

Here is the clearest information I have found on the Umbilical Artery S/D ratio so far:
(Besides how the doctor explained it to us: he drew a picture of the Doppler flow graph and everything! -it was great..:))

"The normal S/D ratio decreases with increasing gestational age. Elevated S/D ratios indicate diminished diastolic flow, a sign of increased resistance in the placenta. The cutoff for an elevated S/D ratio depends on gestational age.
At 26-30 weeks, the ratio is elevated if it measures greater than 4;
(Ours started at 7.57 at 20 weeks, then at 6.0 by 25 weeks.)
At 30-34 weeks, if it measures greater than 3.5;
(By 30 weeks, ours jumped up to 7, rather than following a downward curve.)
(The following week: 31 weeks, measured at 5.8.) (Still high, but going down again.:) Thank you, God.)
After 34 weeks if the S/D ratio is greater than 3.
(We hope to make it this far! -We'll see...)
A fetus with an elevated S/D ratio, which indicates high placental resistance is at increased risk of perinatal morbidity and mortality. Doppler measurements can be used to monitor the well-being of a high risk fetus to determine optimal timing for delivery."
-Atlas of ultrasound in obstetrics and gynecology
By Peter M. Doubilet, Carol B. Benson

We had our shortest visit to the specialist so far: 2 hours! I had all the normal care done: weight, blood pressure (which is slightly elevated for me: 133/80; but they say it's fine- increased blood volume and all that goes along with pregnancy... I usually run about 115/70.), urine test, fundal height measurement (which he got at 28 cm; last week at Dr K's they got 29!:/), checking for any edema (just mildly, but I can tell it!), and asking about any contractions, spotting, cramping, and all that... Plus I had the non-stress test, and a short ultrasound just to check for movement, practice breathing motions, and the Doppler flow. We did get a picture of his face- it was sooo cute! He turned his face to the side and looked directly at us and it looked like he was smiling! -Too bad it wasn't one of those 4D pictures, that would have been really cute!:) I'll put it on here, but I'm sure it's too hard to see; it's even hard to see once we put it on the computer...

We go back to the doctor on Wednesday morning, 8:00am; that means we'll have to leave here no later than 6:30am... :/

I'm so thankful that in this entire ordeal we are going through, God is still answering prayers... The palate doesn't appear cleft, and now the S/D ratio has gone down a little... Most of all: we are happy and able to joyfully anticipate our little one's arrival...Thank you for praying!:)

The Sound of a Shower

2011-09-13T11:24:00.000-04:00

...for us? For our baby?

I had long ago laid the thought aside...
But the recent doctor visits had been so much more hopeful...
Maybe we would bring our baby home! -at least for a while...
And the thought of celebrating his life now, and including him in our lives now, has stayed with me.

So I was excited when I heard that our good friends and our daughters were planning to give us a baby shower! But after the last doctor's visit, they decided that they should really get things going, just in case Hazaiah came sooner rather than later!

I, too, was unsettled by the news of a possible early delivery... Things looked so promising for him to come home- possibly even after just a couple of days! But to come so early would change everything...

We felt the need for prayer so much more; Specific prayer for the needs he has now: The need to stay in the womb and continue growing, along with continued grace, peace, and strength to face whatever lies ahead...

I've always liked baby showers: all the funny games and laughter, the excitement you see in the face of a new mama, and the joy of little children playing, reminding us of the certainty of continued life: The babies grow and mature, they speak, walk, and play sooner than we realize. How important it is to value their lives and to take thought while raising them!

And honestly, with all children, we never know how long we will have...

With this thought in mind, I wanted something different for this shower. Games and prizes are fun, but when we really don't know how long we have, we tend to condense all of the truly important things in life into the moments that we do have... I wanted my husband and son included. I wanted Hazaiah to hear the singing and praising of God's children. I wanted Hazaiah's needs prayed for...

So we invited entire families instead of just ladies, decided to lay aside the games (that the men might be embarrassed by anyway!), and have a time of singing and praying instead...

And we received so much more than what we looked for! It was such a blessing to all of us to be prayed for, to see and feel the love and support from others, to just fellowship, and celebrate and share our baby with others as much as we could right now...

30 Weeks!

Setting up!

Clothesline decorations:

If you look closely you can see an ultrasound profile picture of little Hazaiah's face.:) Since it is a bilateral cleft lip, there is nothing in the center to hold down the lip, so it sticks up under his nose...

Blocks:)

I love this cake Jasmin made for the shower.:)
They couldn't find a J so they just got the H and the M.

Ted moderating things and confessing that he's never been to a shower lol...

I always love it when there are children at a shower and they all love to gather around when the presents are being opened! We all get excited by presents- children just aren't afraid to show it!:)

I had forgotten how little the diapers are at first! So tiny... And I couldn't hold back the tears each time I held one of those sweet little outfits or blankets: How long will he get to use them? How will he look wearing them, or wrapped up in them?

It did get hard...
Cards are so beautiful, and words have always meant so much to me. But I've never realized how much meaning the standard store-bought cards can hold; the cards that are printed by the thousands, and meant to welcome every newborn baby with joy and thankfulness-
they seemed so specific to our little Hazaiah...

"Our thoughts of you are always gently wrapped in little prayers

for heaven to smile on you, angels to watch over you, and happiness to fill your heart..."

"May you feel His loving presence and know He's always near
to help you guide the precious one you love and hold so dear..."

"Hope your baby will fill your home, sweet home, with joy, sweet joy..."

"Guided with tenderness, nurtured with love, Gently watched over by Heaven above,
happily waking, or safely at rest, may your precious baby forever be blessed..."

"When God gives us a gift, it's always good.
He knows us so well, cares for us so deeply, and loves us so much.
If it comes from His heart, it's perfect for ours- because love is always the reason He gives..."

"May God grant you and your precious new baby boy His goodness, grace, and love,
and make all your days together wonderful..."

I could go on... These are all from traditional cards that people buy and give every day, but suddenly they have so much more meaning... And then there were personally made cards. Written words of comfort straight from the heart and mind of the families who wrote them... All of these will always be held so dear to us. And to everyone else who has written words of encouragement or sent cards in the mail: we thank you so much for sharing your encouragement and comfort with us- it has truly been a blessing to our whole family!

2011-09-11T15:42:00.002-04:00

Hazaiah Jude

30 Weeks

God Will Decide

We will praise the Lord

The Sound of Sudden Urgency

2011-09-07T06:26:00.003-04:00

"My soul doth magnify the Lord, and my spirit hath rejoiced in God my Saviour..."

"For he that is mighty hath done to me great things..."

"Marvellous are thy works; and that my soul knoweth right well..."

Those were the words running through my mind yesterday as I lay back on the chair during the ultrasound, hearing the words the doctor spoke, and being filled with hope once again...

I had big ideas before we started: I would ask them to look at the eyes, to see if they opened, and if they could see his eyeballs; I would also ask them to check his brain again to see if anything looked abnormal; And of course, I was hoping for one of those fancy 4D pictures of his face! (Once you see those, especially with a baby where you're looking for facial clefts, you get kinda spoiled with them!)

However, God has His own ways of telling us what we need to know, and looking back, I'm so grateful for the way God brought encouragement to us that we may not have received if it had worked out differently...

After the usual long wait in the two separate waiting rooms, we were brought into the ultrasound room to begin.
"Ok I'm just going to check for growth this time," the sonographer told us.
"Oh? You won't be looking at his organs this time?" I asked, as she was getting her equipment ready and I was getting situated on the chair.
"Well since we've already done 2 anatomy scans, we won't need to do any more. We will check the kidneys and the heart, because we've already found some anomalies there. But usually, by this time, everything is how it's going to be."
"Oh so if the brain had something wrong with the way it formed, you would've already seen it?"
"Yes."

For some reason, that brain formation is so important to me. I don't think it necessarily means the brain "works" right, but it certainly gives me hope to know that such an important organ is formed correctly! But I was a little disappointed that she wouldn't be looking at it again...
"I was wondering..." I said as I began my next question, "I know that by now he should be able to open and close his eyes. Can you see that through the ultrasound? -To see if his eyelids are fused together or not? Or can you tell if he has eyeballs?"
"Oh it's very rare," she said, "We hardly ever can get a view of their eyes blinking, so we can't usually tell."
Slightly frustrated, I just decided to assume that his eyes were normal, since they hadn't noticed anything that looked strange before.
So I settled back against the chair and she started the measurements...
Ahh, there he is! Our little guy wiggling away on the screen...
My would-be enrapture was suddenly distracted as the door opened, and Dr B walked in.

"Excuse me," he said, "I just have a question for E (the sonographer)."
He asked his question (about another patient's report date) and then turned, greeted us cheerfully, and asked how we were doing.

"Well hello!" we replied, "We don't usually get to see you in here! We're doing good..."

He stopped then and looked at the screen.

"Oh... I see some fluid around the heart," he said aloud and then pointed it out to us on the screen, "It doesn't look like much, but there is some there. That means the hole is still there, but it's still mild right now, and I'm not really worried about it at this point. Did you have an echocardiogram?"
"No," we told him, "We are self pay and they wanted $2,300. for it, so we decided to wait til he was born."
"Twenty-three hundred?!?" His eyes got big and he smiled and laughingly said, "I'm in the wrong field!" He wasn't too worried about us not doing it though- they would do one after he was born anyway...
Then he looked at the kidneys. The measurements had changed a lot, in my opinion. They went from 3.2 and 2.6 to 4.something and 5.something (I don't have the report right here). But he said it was still mild, and nothing to worry about at this point. Then he said that Dr. K had called him that morning and wanted a final answer on where we were to deliver. It was a little confusing for all of us because we were all under the impression that it had already been decided! Then he told us that he would still prefer we were there because "you never know" with these situations, and there was definitely the possibility of needing the NICU; however, he thought we have a really good chance of being able to go home just after a couple of days!! Wow- we were happy to hear that!

Suddenly he stopped, as E showed him something on the screen...

"The hard palate is not cleft!" He said suddenly, and then started explaining how the bony hard palate is a lot harder to fix and it's responsible for blocking off the roof of the mouth from the sinuses and how it's very hard to see via ultrasound but that this is the best view they've gotten and it does NOT look effected!

I was startled, and ecstatic, "So as long as the coordination for breathing/sucking/swallowing is good, he should be able to nurse?"
"Yes," he said, "I really don't think you're going to have any problematic feeding issues."

Then those verses started running through my mind...

The doctor then excused himself, saying he had just come in to ask a question, and we thanked him for staying with us and taking the time to explain things. The rest of the ultrasound continued in a haze, and we watched, so happy and thankful for that encouraging news. I began to wonder, hopefully, "Maybe he'll be alright after all... Maybe it's not a chromosome disorder, and it's just a few defects... We can fix his lip so easily after a few months, and surgery can repair his heart and kidneys..." But I knew better than to let my mind stay there. I refused to live in denial, and reminded myself that usually these defects put together point to a chromosome disorder. I knew I would have no problem rejoicing if everything turned out differently, but I had to be willing to face the worse, and trust God to work all things together for good; not without hope, but not without reality...

After the ultrasound, we were led to another room, and instructed to lay on the recliner for a non-stress test. I didn't know I was going to have one, but it went fine.:) No contractions, and his heart rate increased with movement like it's supposed to. After about 20 minutes another sonographer came in and told us that in a few minutes we were going to have another ultrasound because Dr. B wanted some 4D images.
"Sure!"
That sounded great to us! We hadn't gotten any with the first ultrasound that day, but we were so happy with the news that we didn't mind. So we walked back over there, and excitedly had another ultrasound just on his face; but, his arm was up and he wouldn't put it down, so we got his left hand in there too. And to our surprise, they couldn't see his skin tag on his left hand! The doctor told us those don't go away by themselves, but he couldn't see it anywhere... The full 6th finger on the right hand is still there, along with the 6th toe on the left foot, but the little dangly "finger" (skin tag) on the left hand was not visible at all. Was it gone? Had they just been overcautious about seeing it before? We don't know, but will see when he is born...

So after all of that, we went to the room to wait to talk with the doctor...
As soon as he came in, we could tell he wasn't quite as upbeat as he had been in the ultrasound room.
"Well," he began, taking a breath and setting down our chart, "Now that I've had a chance to look at the entire ultrasound report, I can say it definitely answers any questions we may have had about where to deliver... We're still having some problems with the blood flow through the umbilical cord. The blood is not circulating well on the resting heartbeat, which we already knew, but it seems to be getting worse. That means the placenta is not functioning as it should, and the growth has dropped to 2 weeks behind. When the S/D ratio is between 3-8 it's kind of a gray area where we just monitor it to see what's going to happen, but once it gets to 8 there is a good chance the baby could die in utero if not immediately delivered. You are at 7 right now..."
We just waited...
"Usually when we see this, we try to make the best decision as to whether the baby would do better in the womb or out of the womb, but at 29 1/2 weeks- and a small 29 1/2 weeks at that- I feel the best decision I can make now is to leave him there and hope he continues to thrive."
He took another breath and continued, "I know that by doing that, there is a serious risk that the baby could die in utero within the next week or two; however, if delivered now, it's just as risky..."
Oh, our hope sank again...
"If we can keep him going until at least 32 weeks, his chances improve greatly. Babies born at 32 weeks have a 90% survival rate, with 70% of them not having any lifelong disabilities due to being premature. Now of course, if he does indeed have a chromosome disorder (Oh! -that one little word "IF" gave me hope!) then he will still have the disabilities from that. -And, if he can stay in utero until 34 weeks, the survival percentage increases drastically!"
We nodded, and continued listening...
"Now I would love to be sitting here at 34 weeks having this conversation as we all wonder 'Hmmm should we deliver now due to the placental bloodflow?' But I don't think that's going to happen. My guess, is that we will barely squeak through to 32 weeks, and then need to deliver..."
Those words stayed with us as we checked out, and all through our meal together... (We were so hungry after another 3 1/2 hour appointment!)
"32 weeks!!"
"That means we could have a baby in 2 weeks!"
"We aren't ready!"
"What do we need?"
"How will he do?"
"How long will we be living at that Ronald McDonald house?"
"How much worse will the physical problems be affected because of the prematurity?"
The questions went back and forth between us as we sat at our quiet little table together...
We don't really know though- we don't have answers. We can only take it one day at a time, and one test at a time... We will need to go to Dr. K once a week for non stress tests to monitor his heart rate, and then to Dr B once a week for another nonstress test, along with the ultrasound measuring the bloodflow of the umbilical artery.

When we got home, Jason had a men's meeting a church, and my tired brain looked up everything I could on IUGR (specifically with the umbilical artery flow), nursing with a bilateral cleft lip, and premature births... The umbilical artery flow was very hard to find info on in layman's terms. Any reliable source that had anything was from Yale U or some equivalent sounding high medical field; however, I did find some very encouraging personal stories about babies being born as early as 27-34 weeks, and weighing 1- 2 pounds, and doing very well in the end. But these were babies with only IUGR, not a trisomy on top of that...
So really, we don't know. We don't know what will happen, or what the best thing to do will be. But God knows we don't know, and we trust He will give direction and wisdom if we ask...

All parents are faced with the daily decisions of life for their children. We seek wisdom and try to make the best choice; However, even with all the knowledge we get a hold of, we can still look back and wish we had done something differently: perhaps a wrong turn on the road, or eating something that upset our stomach, or staying up too late one night... But our intentions were good, and thankfully there is a mutual trust of that within a family...
Well, in that same way we have grown to trust our doctor's intentions towards us, and we are grateful he wants to help us as much as he can. Of course we trust God above all human understanding, but we have placed ourselves under a doctor's care- a doctor who has more knowledge than my "Google searches"!- and we trust that he wants to make the best decisions to do all that he can to give Hazaiah as much time with us as he can: whether minutes, hours, days, or years... And we are very aware that the doctor may look back and wish he had done something differently, whether to have delivered sooner or to have not delivered quite so soon; but we will pray for him. We will pray that God will give him all the wisdom and direction he needs to make decisions that will fulfill His will for little Hazaiah and for our family...

The Sound of a Pound and Plans Postponed

2011-09-05T07:20:00.004-04:00

Well, today is Monday, and we go to Dr B (the specialist) tomorrow, so I thought I'd update before I have to mix it all together in one gigantic post!

First: Last Thursday's Dr visit with Dr K here in town went well.:) Hazaiah has gained a whole pound!! (Mama has gained a few more, but that's beside the point.:/) The sonographer was very encouraging (almost too encouraging!) as she reminded us that "All his external physical problems can be fixed Mama; Don't worry..." She didn't seem to think he was very small at all, until she asked how big my other babies were.
"Well, my smallest was 8lbs 2 oz and the biggest was 9lbs 15 1/2 oz." None of them went past the due date either; they were all between 4 days - 2 weeks early.
"Oh... So you do have big babies then!" and she kept measuring...

I guess here at Dr K's office they won't be looking at his organs and all of that; they will just be monitoring his growth and saving us from another trip an hour away to Dr B's. I even had to sign a "Transfer of Care" paper so that it's all official that we will deliver at the bigger hospital. In some ways, that makes the doctor visit here less stressful, more relaxing. Everyone is happy, and after looking at the days ultrasound report, Dr K even smiled and said, "Well, everything looks good!" Of course he quickly qualified that with, "Well, I mean, as far as with what we're dealing with here..."

I understood.:) He meant that nothing looks worse. Seriously, that's what he meant. But I didn't care. Our baby had grown a whole pound! That meant he could stay in there for a little while longer...

Thankfully, the contractions have stopped for now; albeit not without a little scare! Sunday morning as we were getting ready for church, I noticed some spotting. Not a lot, but enough to alarm me. (As any amount would I suppose.) To make it worse, I couldn't feel any movement from our normally active baby boy during the entire first half of the service! But the spotting stopped, and by lunch I noticed a few kicks.:) I haven't had any more spotting, and when I came home and tried to take a nap he was as active as ever! -as Daddy lay on my tummy and talked to him.:) He seemed to be saying, "I was just trying to be a good boy and sit still during church service!":) I guess I'll mention that to Dr B and see what he says...

Second: Modesty is finally getting better! -She is even doing her schoolwork this morning!:) On Saturday morning, her fever stayed down to 99, and that was the first it's been that low in over a week (unmedicated anyway). She was still very weak and laying on the couch all day Saturday, but she did read some books. She didn't wake up at all that night, which is the first in a week also. Then when she got up Sunday morning, she told me that when she walked out to the living room (very slowly and steadily) it was the first time her head didn't jar. So we were very grateful for that! But I still didn't think she was ready to go anywhere. And since she wasn't feverish, and I had missed quite a few Sundays lately, Jasmin stayed home with her while I went to church. It was so uplifting to all of us to see her delightful smile and laughing characteristics return that evening! She did have to miss her first soccer game, but she hasn't complained about it at all; I guess she knew she felt too bad to even think about going! We'll try again this Thursday if she continues to improve...

Third: We had a change of plans for Jason's birthday supper. His birthday was Thursday, the same day as the game, so we had already planned a private meal with just our family. That went well: we had breakfast since we all like breakfast for supper! And Heaven had made his favorite cream cheese sopapillas for dessert. Since we didn't go to the game, we had more time for presents afterward, and he was so glad for that because he had something to assemble that he wouldn't have had time for until the weekend if we had gone to the game! But we had planned to have some of his brothers over on Friday for another celebration with his birthday cake: That had to be postponed since some of them have little children and we didn't want them to catch whatever Modesty had. (Though no one else here seems to have gotten anything- not sure why, but I'm not complaining!) Anyway, we weren't sure what we were going to do until late morning, so Jasmin had already baked the cake; so she just wrapped the layers up (uniced!) really well in plastic wrap and then froze them, and we'll try it again next weekend... Jason loves to grill, and we already had the meat thawed for hamburgers, so we just went ahead with that anyway. Heaven made the buns, and that is definitely a winning combination! Oh my... homemade whole wheat buns with a grilled hamburger patty! Yum.:) Of course, since we were planning for company, we had hamburgers all weekend; I suppose that may amount for more pounds at the next doctor visit!

So tomorrow is "the day". We hope to have a full body scan on our little Hazaiah again. We want to see how that hole in his heart is doing, and the kidneys. I also want to ask how his brain looks- so far it's appeared normal. And... it's time for his eyes to be able to open and close! So, hopefully, they will tell us if they can see them...
We will try to update again soon!:)

This and That

2011-08-30T16:49:00.003-04:00

We went to Walmart today. While in line, an employee came up and asked, "Do you know what you're having yet?" I smiled and told her it was a boy. Then she laughed, pointed her finger at Noah, and said, "You won't be alone anymore! Are you happy about that? I know you are!" Through a big smile he nodded and told her yes... I guess she's seen us in there before- Noah and all those girls!:)
Next we went to Kroger. Another "soccer mom" that we know came up and started talking to us about a travelling team she thought we may be interested in. After a few minutes she put her hand on my tummy and said, "Oh, you're having another one! How many does this make for you?" When I told her 6, she laughed and said something about having a lot....
"Well," I said, "They don't expect him to live very long."
Of course her tone changed, and she told us she was sorry... I tried to assure her by smiling and saying it was OK, and then talking about soccer again. I didn't want her to feel badly! -but sometimes, it's hard to know when to tell, or not to tell, people that we only see occasionally.
Then I went over to the apples and saw one of the produce workers. He asked me how much longer I had left... Then, our friend at the register told us she was praying for us...
We decided the clothes I had on today must show my tummy more, because we NEVER get that many comments in one trip to town! But it was fun to talk about Hazaiah.:)

We get to go to the doctor again on Thursday! Yay! I am so excited! It's going to be a very busy day though: Doctor in the morning, Modesty's first soccer game, and Jason's birthday all in one! We have lots of surprises planned for the birthday; ;) But Modesty has been fighting a fever on and off since last Sunday evening (over a week now!) so we hope she will have her strength back. She has been sick on the couch all day today...
I have also been having some contractions for the last week, so we're hoping nothing is going on with that... I just had them again on this past weekend (well, they started Sunday) and then they were gone by last night (Monday). I told Jason that the baby can't come yet because I still have one more maternity dress to make! Haha trying to make a joke so I don't get worried...:/ But really, if anyone feels led to pray that they stop altogether for now, we would appreciate it!:)
We are really excited about going to the doctor this Thursday. We will just go here in town this time, and we will have an ultrasound. Yay! -We get to see little Hazaiah Jude.:) Funny - cause I never cared so much about doctor appointments before; but now, it's another chance to see our baby... I guess I'll tell Dr. K about the contractions and see if he's concerned.
I've been feeling rather weak and a little dizzy lately too. Jason takes my blood pressure and says it's fine. It's always been really low... So I wasn't sure what the weakness/tiredness was from; then I remembered being slightly anemic with another pregnancy. So I got on line and searched the symptoms. Sure enough- along with some other symptoms I've been having, sounds like it could be low iron. Anyway, another "thing"! But at least if my iron is low, it gives me an explanation for why I feel so weak all the time!:) I think the doctors usually do a routine test for anemia around 28 weeks, and I'm 29 so maybe they have it planned...
Well, we had a few days where it seemed like Hazaiah really slowed down in my tummy, but that was a couple weeks ago, and now he has been as active as ever! It's so fun to watch my belly jump around.:) He wakes me up in the middle of the night when I lean over on him too much. I usually sleep halfway on my tummy, but he lets me know if I've gone too far! Kick, kick,kick, "You're smashing me mama!":)
It's so cute, and I love enjoying this gift of life that he has right now.:)

The Sound of Anointing

2011-08-23T15:22:00.010-04:00

I said in the last post that I've worried a lot about fighting the doctors, not being told something right, or looking back with regret that we didn't do some surgery or give him enough time on whatever machines to keep him alive. But then I remembered that "The LORD is my helper, and I will not be afraid what man shall do unto me."
Well, I kept worrying...
After a self-investigated crash-course in chromosomal disorders (specifically trisomy 13), I've come away knowing a lot of symptoms and outcomes, but very little knowledge on how to decide what symptoms can be treated, and how to treat them, and then when to let go... I was left with a lot of confusion, helplessness, and a very real weight of weakness resting upon me.
But "The LORD is my helper..."
And gradually, the reality that goes beyond the surface knowledge settled in and I confidently rested in the fact that "The Lord IS my helper!" And when I came to Him with the feeling of weakness, He reminded me that "My grace is sufficient for thee: for My strength is made perfect in weakness..." And doesn't it say next: "Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
Whew. Not sure if I can say that I "feel" myself glorying in my infirmity here, but I do have peace knowing that God is well aware of my weakness in not understanding all of this- and He is right there to help us! I'm so glad He doesn't expect me to understand years and years of medical knowledge in a few short months- and therefore able to make all-wise decisions!

No sooner do I leave that confusion behind me, that I start on another path...
From the beginning of all of this, some people have mentioned anointing. Not aggressively or forcibly, but casually here or there. It never struck us as anything that applied to our situation: I wasn't sick, and we couldn't anoint Hazaiah. And so, being the "applicable" person that I am, I couldn't see how the scripture could fit. But soon after I had peace about God directing our decisions for Hazaiah's treatment, I started realizing more and more that God is using my body to carry the baby, and what if I needed to be healed? Wouldn't that apply to the baby? And truly- God is so much more gracious and understanding of our motives than I am. He isn't looking for someone "legalistically" following His every jot and tittle; rather, a heart that is completely dependent on Him, and in childlike faith, reaching up to her Daddy's hand for help...
But still, I wasn't sure what to do. And the weight of it dragged me down... Last week it started getting worse and worse and I thought, "What if there is something wrong with me? What if, after Hazaiah is born, we get pregnant again but my body does the same thing?" But how will I know?? I was crying nearly every day in confusion... I was trying so hard not to burden Jason with my worries, but he knew something was wrong, and so one day I spilled it all out to him. Goodness I just cried so hard! It would've done me good just to start by telling him all of it! It took a load off of me just to open up to him about my fears. I woke up the next morning a little lighter, but gradually over the next day and a half the weight returned. I guess I imagined that Jason just thought I needed to unload on him, and so he dismissed my fears as overwith, for he wasn't saying anything.

(If anyone has read the No Greater Joy article- or the chapter in Debi Pearl's books- "Three Kinds of Men" you may remember the part about the Priest: "Mr. Steady". It says: "The steady man does not make snap decisions... You {as his wife} need to learn how to stand still and listen; then let God move your husband in His own good time.")

Instead, I began thinking that I had to figure it all out myself. But I should've known better! Jason has proven to me so many times that he has my best interest in mind, and that he continuously thinks of my needs, even when he is quiet. So he found me laying in the bed on Saturday, crying again... He came and put his arms around me and told me he had been thinking about it since I told him, and he didn't want me to look back 6 months from now and regret that I hadn't been anointed, or hadn't done something else that may have helped. He didn't want me to have to live with the everlasting question of "If only I had done ___ would he have been healed?"
So he called our pastor and deacon, and we went to talk with them that evening, requesting anointing for the following evening if they both agreed... They did, and the peace in my heart returned.:)
So Sunday evening came and we had a time to pray, read the scriptures, and go to the Lord in faith...

Our faith in God's ability to heal is very real. But I must say that I still don't know what His will is in all of this. It's just that so many times, when God has given me something to go through, He usually lets me go through it... But I know that God's healing is not based on me having faith that He will heal him: I don't need to muster up my faith and get it big and snowballing into a large clump and then present it to God and say, "There! There is my faith! Doesn't it look big enough to heal?" No. My God is already big enough to heal.

My faith says:
"Thou hast beset me behind and before, and laid thine hand upon me.
Such knowledge is too wonderful for me; it is high, I cannot attain unto it.
Whither shall I go from thy spirit? or whither shall I flee from thy presence?
If I ascend up into heaven, thou art there: if I make my bed in hell, behold, thou art there. If I take the wings of the morning, and dwell in the uttermost parts of the sea;
Even there shall thy hand lead me, and thy right hand shall hold me."

Or just as Shadrach, Meshach, and Abednego claimed:
"If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king. But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up."

So in faith we say that God can heal! And in our human understanding we ask Him to heal- but in faith we trust that He knows so much more than we do, and we trust ourselves to His wisdom, love, and ultimate faithfulness to us...

The Sound of Weary Walking and Rainbows

2011-08-11T13:51:00.008-04:00

You know that "let-down" you get after you've been waiting and waiting for something, it finally arrives, and then it's over? I've heard it happens to a lot of people after the holidays... Excitement is in the air as the anticipation builds in every heart and mind- wondering what will happen, imagining the day or time; and then it's all over... A lot of people sink down to even lower than they lived before that "holiday-season".

That must've been what happened to us after the last doctor's visit. Perhaps we weren't looking for some dramatic turn of events, or a celebration of miracles, but we were looking forward to seeing, and talking about, our baby again. We had a bomb dropped in our lap the month prior, and then had to wait 5 weeks before any "official" communication- so it's understandable we would be eager to talk to the doctor again! We loved our next appointment that Thursday; however, the weekend following, we crashed: sleeping more in those three days than in the entire previous week! I can't explain how mentally and emotionally draining this has all been...

I told Jason I feel like my body is losing all it's strength; that it's so hard just to do the normal tasks of life, and it's not because my belly's swelling!:)

So this week I decided I would focus on three daily things: making supper, doing the laundry, and going on a walk every morning. -Now it's Friday morning and I've had my last walk of the week, supper is planned, and the last load of clothes is awaiting the clothesline. The older girls have been going to town more and more for me, but they were busy this week, so I even managed to go (twice) myself! (For some reason, being around crowds of people wears me out the most.) Plus I cut out a slip to sew later, cleaned my bathroom, went swimming in a friend's pool one afternoon, went to Modesty's first soccer practice, and still managed to get up every morning at 5:00 to pack Jason's lunch and see him off (without going back to sleep afterward!)! So I'm thankful today for what I feel was a profitable week. I'm still pretty tired most days, but it's a "better" kind of tired. After not going on walks for several weeks, (ok, ok, maybe months- due to that "first-trimester" slump) and still having the heaviness of my emotions, it was pretty strenuous to start walking again. I use to walk between 3-5 miles several days a week- and when I didn't have time, I would walk a shorter loop that was only 1.5 miles; Well, now that "shorter loop" has been all I could handle! :) So my body has been more worn out; But I think it's helped me sleep deeper at night, and not given me as much strength to use my mind for worries, questions, and searchings...

I've noticed, during these last few days, my thoughts anticipating and focusing more on Hazaiah's life rather than the expectation of death...
You see, I've always heard of that "after-holiday-let-down", but I don't think I ever experienced it myself. I remember, growing up, I was always excited about what Christmas would hold for me: new toys, clothes, and usually candy. But after it was all over, I was always happy to just have my "stuff". I had fun with my toys, ate my candy, and looked forward to wearing my new clothes when school started again.

And now, I just want to have my baby: to look into his sweet little face with his bilateral clefting, to hold his tiny body in my arms and gently curl his 6 fingers around 1 of my own. I want to rock him, sing to him, and enjoy his life, however short it may be...

We talk about buying a bassinet after one more doctor's visit- by then I will be 29 weeks, so we will have a better chance of him using it. We talk about a car seat, and a changing table to store his little diapers and clothes on. We only look at preemie sizes, since his weight isn't expected to be over 5 pounds, and the girls surprised us when they got home from town last week: The cutest, tiniest little outfit I had ever seen! His first one...

But then there are times when fear overwhelms me once again. At the last visit, Jason had asked about the benefits of an amnio- what are they? The doctor answered by telling him a possible labor and delivery situation:

"If you don't have an amnio, then we don't know for sure that he has Trisomy 13. So if, during labor, we notice by his heartrate that he is under any distress, we will have to do any emergency c-section. However, we won't do that if there is an official diagnosis of Trisomy 13- in fact, we wouldn't even monitor the heart..."

I feel like I'm missing some piece of information when I talk to the doctors/nurses; are they withholding something from me? Is a c-section really that risky for me? I don't think so... I don't understand them when they ask about "What we want done". We want him to live- wouldn't everyone? Why is it suddenly ethically OK to not help a baby live when he needs it? Oh, I know there comes a time when "nothing else can be done"; but should we really be planning on letting that be the starting mentality? Is Hazaiah's life not worth saving, simply because he has Trisomy 13? I worry about fighting the doctors. I worry about not being told something right. I worry about having our baby die and then looking back in several months and realizing "if we had just done ___ he would have lived longer..." I heard of another doctor telling a father who was fighting for the life of his Trisomy baby, "You need to understand: With this baby, it's not if he dies, it's when." The father knew that; But parental love is so strong, and it's so hard to let go...

I read a few statements from a friend of mine; She talks about the normal springtime activities of her son (not a trisomy child). She states:

"A sudden thunderstorm sent him flying from the backyard into Mommy's lap the other day, but I coaxed him out to the front porch to watch for a rainbow and he started to relax. He finally got to see his rainbow later in the evening."

I don't think she was trying to sound spiritual or anything, she was just being his mommy: comforting her son with her lap, but at the same time encouraging him to face his fear, and see the promise of beauty and peace in the end- thus overcoming the fear of a thunderstorm... I thought it was beautiful. -And so much like God. She didn't belittle him for being afraid, nor did she ignore the fear that was so real to him. But lovingly, looking at the situation through her child's eyes, she walked with him- encouraging him that peace and beauty would come; therefore causing him to rest. And the wonderful thing was: He got his rainbow!

I thought about that again this morning... A rainbow is so often used as a symbol of God's promise: Peace and security after the storm. Light and beauty after the darkness. The sign of the covenant- "neither shall all flesh be cut off any more by the waters of a flood." I thought of different promises in the Bible- and my fears in understanding, or not understanding, or being misled by, the doctors, and I remembered this:

"He hath said, I will never leave thee, nor forsake thee. So that we may boldly say, The Lord is my helper, and I will not fear what man shall do unto me."

I must remember that God will give us all the wisdom He wants us to have. He will help us to make those tough decisions when it's time... For now, I want to keep enjoying and anticipating life...

The Sound of Acceptance

2011-08-05T07:06:00.005-04:00

"Accept everything, even the worst, completely and permanently;

and then use every possible resource, both human and spiritual, to effect a solution."

"We must accept the worst and then hope, and trust, and work for the best."

"It must be recognized, however, that acceptance is not submission,

with it's overtones of submerged rebellion;

it is not resignation,

with it's dangers of ensuing self-pity and the development of a martyr-complex;

it is acceptance in the fullest sense of the word..."

"I take, content,
What He hath sent;
His hand can turn my griefs away,
And patiently I wait His day."

I have spent the last 5 weeks researching and preparing myself, and my family, for nearly every possible outcome that we could face with our dear little Hazaiah Jude; all the while hoping and praying that God would heal him, taking it all away, or that there would've been some mistake, and that the doctor didn't see things right.
So when we walked into that ultrasound room yesterday, I wasn't sure what we would find: Would there be more evidence of Trisomy 13- things we hadn't seen before? Would he be completely healed? Or would things look about the same...? I sat back and tucked the towel around the bottom of my tummy as the sonographer squirted the warm gel all over my bare skin. The screen on the wall in front of us came on, and we saw our baby wiggling enthusiastically.
"Well there he is," the sonographer said, "he's moving quite a lot! Looks like a healthy heart rate..."
We had a different sonographer this time, she was very friendly and talkative, and we felt comfortable with her immediately. I asked her if she was aware of what we are facing with our baby. She nodded and told us that she had looked at our charts before we came. I was glad, and told her that I feel bad for the sonographers that find out suddenly for the first time right when they're taking the ultrasound...
She continued the scan... I surprised myself when I noticed I was shaking suddenly.
"Are you cold honey?" Jason asked as he leaned further down to me and snuggled up close.
"No I don't think so," I replied, "I think I'm just nervous." The shaking continued for several minutes as we watched our baby's body parts on the screen.
I knew she was limited on the amount of info she could give us, but I thought I saw a view of his nose and lips, and I saw the two dark places on the sides. So I asked her if those dark places were the clefts under the nose. She was very gracious and went back to a clearer spot and froze the screen.
"This is his nose, and underneath is his lips," she told us. She then placed two arrows pointing to the sides of the dark places, and I briefly hoped that those were his nostrils... "You can see the two clefts here and here."
I nodded.
She then went down a little to his chest and arms.
"The way the screen goes in and out like that makes his chest look like it goes up and down, and I thought he was breathing!" I said aloud to both her and Jason, "But then I remembered that he doesn't breathe in the womb."
"Actually they do make breathing motions in the womb," she said smiling, "You were probably seeing some of that; we like when we see that- it's a good sign."
I looked for the extra fingers on the hands, but couldn't make any out. Then she went down to the feet... I counted toes silently: 1,2,3,4,5... 6? I counted again: it looked like 6 toes, and I noticed we were on the left foot. What? They didn't say anything about that last time... Was I mistaken? I know I don't comprehend these things very well... She went to the right foot, and I counted silently: 1,2,3,4,5... That was all. Well maybe I just saw wrong on the left foot...
She continued on with all the organs, and the shaking soon subsided. I have a hard time following the external parts of the baby on an ultrasound, but I am even worse with knowing what to look for on the organs; so I guess that knowing I wouldn't pick up any "signs" now calmed me down. She began measuring different things, and telling us, "Here is his stomach, here are his kidneys, now the brain..." I noticed one kidney was bigger than the other, but didn't know what the measurement was.
"Now I'll do the heart," she said.
She measured and studied for a while. She seemed to take a long time on it... She would look at the heart for a few minutes and then go to other parts of the body. She wiggled the device on my tummy and tried to get him to move. She was having a hard time getting what she wanted.
"Every time I think he's going to move over he moves right back down where he was," she said with a laugh, "He certainly is an active baby!"
"Oh I definitely know that!" I told her.
"You should see at night when I talk to him," Jason said, "He'll be still until he hears my voice and then he starts moving all around."
It's true; Hazaiah seems to love his daddy's voice.:)
She tried again at the heart for a minute, and then went back to the face. We saw the profile on the black and white screen, and then she typed something into the keyboard. Suddenly, on the side of the profile, a 4D image popped up unlike anything we had seen before.
"Look at that!" I said, "There he is!" I felt chills all over my body as I realized how clearly we could see our baby's face. It was in color: different shades of browns; and all doubt was removed as I saw the truth of what we had been hearing. It had all been so vague before- the fuzzy black and white images left so much room for mistake, in my mind; I had thought that there was a chance they had seen wrong, and that there were no clefts. But it was unmistakable.
The tears slid slowly down my cheeks while at the same time my heart filled with an unexplainable protection and love over his sweet little face. But I guess it is explainable: He is my baby, and I am his mama...
"He is so cute! -so sweet," I said to them...
She then went back to the heart and explained she needed just one more picture, but that he wouldn't hold still long enough for her to get it. So then she had me turn on my side, facing away from her and towards Jason. We snuggled close into each other's necks, and my tears flowed for just a minute...
Then I whispered to him, "How many toes did you count on the left foot?" (For I knew he would've counted them too.)
"Six," he told me.
"And the right?"
"Just 5."
"Me too..."
She then had me stay on my side while she got the final picture...
After handing us the printouts of a few pictures, we got cleaned up, and went to the other room to wait for the doctor. I guess I kinda dreaded this part- remembering last time...
Finally he came in, shook our hands, and sat down.
"Well, things look about the same," he began, and he went over the different things from last time, "However, we did get a closer look at the heart, and the baby does have a hole in his heart also."
"Oh... Don't those sometimes heal themselves?" I asked.
"Yes, they can," he said, "and that may happen; But sometimes they need a mesh or something similar to cover it, depending on how big it gets.
"Also, the growth was behind on the last appointment, and now it has dropped to even further behind than last time. I don't think the baby will do well going to term; we will probably need to deliver early. How early, we can't tell right now..."
We talked for a while about delivery options, labour options, our own personal desires for how we want things to progress, etc... It was a long discussion. He told us that he would avoid a c-section if possible, and that since I would most likely be discharged from the hospital after a couple days, he would be sure to set us up at the Ronald McDonald house next door for as long as the baby needed to stay. This made me happy! For one: he was not saying the baby would definitely die at birth! For another: We would be close by him the whole time!
I remembered we didn't know for sure about the baby's palate last time, so I asked him, "Is the palate intact, or is it cleft as well?"
"Oh it's definitely cleft," he said, and my heart sank, "Not only that, but the bony (something-or-other) where the teeth come in is cleft as well."
Suddenly he asked me if I was planning to breast or bottle feed.
"Wh-what?? Well, I would love to breast feed," I said startled, "But I didn't think there was any way..."
"Well, we have a device we can put into his mouth, and as long as it works alright, you should be able to try breastfeeding."
Oh I was SO excited! "But I thought the coordination for sucking/swallowing/breathing didn't work on trisomy babies?"
"Well, we'll have to see," he said, "But I think you have a chance."
My goodness, It's amazing how grateful I've become for the little things...
"Another thing," I began, "During the ultrasound, we both thought we saw 6 toes on the left foot, and only 5 on the right. Is that right, or did we see wrong?"
His eyes widened and a smile spread across his face, "You saw that?"
"Well, we thought we did... I know we're not trained or anything, but we just wondered..."
He nodded, "Well, yes, yes; you saw right. I'm surprised... I usually don't go into that much detail, but since you saw it, I'll tell you it's right."
After a few more minutes of discussion, he had two of the NICU nurses come in, to discuss with us what all we wanted when the baby was born. To me, this is surprising. I don't really know what to say except Do all that you can to keep our baby alive! We want to give him the same chance at life that we would give to any other child...
They were very sweet and encouraging. We told them we do indeed want resuscitation upon delivery if needed, and we want to use all of the knowledge the hospital has to help him; and at the same time, we want to bring him home as soon as possible. The machines are great, but there is nothing like real love and loving arms and hearts to comfort and help a baby!
They understood, and told us they had just had another baby, with trisomy 18, that they were able to send home and he lived for 21 days, without a stomach.
"Twenty-one days!" I thought, "Could I perhaps have twenty-one days at home with my baby, possibly breastfeeding...?" and hope flooded me again...

There was one more question I had to ask them.

"Have you ever seen a baby with facial clefts and extra fingers, and had it not be trisomy 13?" I was pretty sure of the answer, but I had to ask...

"No ma'am," they both said quietly, shaking their heads and lowering their eyes...

Everything was just so different this time... Even though I should've felt worse, since we found even more things wrong, I still felt better. The doctor seemed more encouraging, the sonographer was talkative and friendly, the NICU nurses were nice, and I was hopeful and grateful that I have a chance to have my baby in my arms for maybe more than a few minutes...
I told Jason on the way home, "So many people were praying for us; I think God answered their prayers and gave us the peace and comfort we needed so much."
Even though, so far, Hazaiah is not healed, it was a miracle to go to that doctor visit, hear all that "bad" news, and come home hopeful and thankful...

The entire visit lasted 5 hours. Here is the summary:
His head and brain look normal! -this is a major praise- I asked what exactly causes a trisomy 13 baby to die, and they said that the brain finally stops telling the baby to breathe, and the heart stops beating. I didn't ask (yet) but my thought is: If the brain is pretty normal, why should it tell it that?? The doctor did say that the three main things they look for in trisomy 13 is the clefting, extra fingers, and heart problems; and our baby has all three of those things...
Spine, Neck, Skin, Thorax, Abdomen, liver, small and large bowel, bladder, skeleton and musculature: All normal.:)
Kidneys: slightly enlarged (although sometimes this fixes itself, and one kidney has decreased in size since the last time.)
Heart: (laying aside all technical terms) a hole in the heart.
Face: bilateral cleft lip and palate.
Extremities: Extra finger on right hand. Post axial skin tag on left hand. Extra toe on left foot.
And the last thing: The baby's estimated fetal weight is less than the tenth percentile, which is potentially consistent with IUGR (meaning he may not grow well in the womb.) He weighs approximately 1 pound 5 ounces. If he continues this growth, he may weigh about 5lbs if he can stay inside and grow to 36 weeks. If he needs to be delivered closer to 32 weeks, and grows until then, he may weigh about 3.5 pounds- cute little baby!
My goodness, I've never seen such a tiny baby...

We go back to the doctor in 4 weeks. Then they will decide if they want us to come every week for non-stress tests and ultrasounds...

The Sound of a Storybook

2011-08-03T06:56:00.007-04:00

I'm scared this morning... I don't know exactly what will happen at this doctor visit. It's supposed to be a routine checkup with the glucose testing, but I haven't been to this doctor (Dr. K) in 2 months, since my 20 week scan was transferred to the specialist (Dr. B). None of the receptionists or nurses will "know" what we're facing yet. And I'm sure we'll walk in, and I'll be greeted with the traditional southern bubbliness of Hey Miss Martin! How'r y'all doin' today? -In the south, every female is a Miss- even if she's a Mrs!
I'll drink my fizzy sweet drink, and we'll sit there for an hour- surrounded by swelling bellies and happy mamas... They'll call us back, take my blood, and then I'll step on the dreaded scale.:( I guess we'll go into a normal room to listen to little Hazaiah's heartbeat (he has been kicking so hard and so much!) and then Dr. K will come in and talk with us...
I'm scared I'll burst out in tears again- just to hear the reports all over. We'll have to walk back through the waiting room, past all those mamas with their babies... I suppose my newly acquired sunburn will act as a mask for most of the redness and puffiness that I may have if I do cry...

Yesterday was Skye's birthday- the girls and I all went to the beach. It was nice to be excited about it, and to see them all enjoying the water so much. But I was worried too- I worried about the long drive there and back, I worried about riptides and undertows, I worried about too many people, I worried about Jason and Noah working in the 100 degree weather on a lot without any breeze. The dolphins swam so close to us that it startled everyone and made them scream! I was thinking If the dolphins can come that close, then the sharks can too! The fish were actually jumping out of the water sporadically the whole time we were there, and by the time we left, three of the girls were stung by jellyfish. It was so hot on the sand, but the water started making me sick, so I stayed out and got too burned. And now that it's all over, and I'm not worried, I say- it was fun! I'm glad I could take them and Skye could have a fun birthday!
After we got home and ate, Skye opened her gifts. I love to see the children opening gifts- their happy expressions are priceless.:) After everything was unwrapped and the children were all examining everything closer, Jason and I were just sitting on the couch watching contentedly, and I saw the children's Bible story books that I had Modesty put on the coffee table earlier...
I love children's Bible story books: They are so simple: Just plainly telling who God is, what He has done, how much He loves us, and what He is able to do. I had been looking forward to reading them to any new little ones we would have, and it was a hard blow to me to realize that I may never have the chance to read Bible stories to our baby boy... Well, the other day I decided I would anyway! Hazaiah is very alive right now! So last night I picked up the book and started reading aloud:

God Made Everything

Long ago there was nothing in the world... Everything was dark...

After each little section, there is a sentence that tells the child something to "do" to join in with the story a little:

Close your eyes and see how dark it was...

Then God did a wonderful thing. God made the sun and the moon and all the stars.

Open your eyes and see the light...

"Yes Hazaiah," I said, "Open your eyes for mama..."

(Some trisomy babies can't open their eyes, or don't have any...)
It continued:

God made all the elephants and flowers and bumblebees. God made everything...

and God made you, too...

You are one of the best things God made.

At the end of each page, there is a one-line prayer that the child can pray:

Thank You, God, for making me.

My voice choked by the end, and I laid my head back on the couch and pressed my hand against my eyes in an effort to keep the tears inside...
The next page was all about Noah and how God took care of Noah and all the animals.

God took care of Noah. God takes care of you, too...

Next page: Abraham and Sarah and their promised baby.

... God kept His promise and baby Isaac was born. God can do anything...

Thank you, God, for little babies...

And on and on the stories went... We all listened together and talked to and about our baby, Hazaiah Jude.
And now this morning we will go to the doctor, and I will try to put away my fear and worry and, in simple childlike faith, know that God takes care of us, and God has formed us.

Thank you, God, for little babies...

~~~~~~~~ Edit ~~~ ~~~~~

Well, we went to the doctor. It was very routine, and thankfully, the doctor did not go over every detail with us!:) He asked what our "plan" was. Ummm, am I supposed to have a plan??? I guess he was wondering how much intervention we would want at the birth. Well, we want to do all we can to keep him alive! After that, he kind of fumbled through his report from Doctor B. It almost seemed like he didn't know what I was talking about... And of course, a ray of hope flashed through my heart- maybe it's all a mistake! But then he said something about the trisomy, and the doctor's recommendations... He also said it seemed like I was pretty good at researching...:/

One bright spot through the whole visit:

I asked him about the bilateral clefting. I told him I couldn't find any pictures of babies with trisomy that had clefts clear up to the eyes; it seemed more like they were covered by the nose. Is that what our baby has? Or does he really have deep facial clefts outside of the nose?

He told me the clefting is on both sides, but it goes to the bottom of the nose and then stops. The hard and soft palate are still intact....

I got chills of happiness all over with this little bit of news! One of the hardest parts for me is that I won't be able to nurse my baby- especially with a cleft palate! But if the palate is not cleft, then to me there is hope! I know that most babies with trisomy- even without any clefting- still cannot nurse: something about the sucking/swallowing/breathing coordination doesn't work, but I had prayed and prayed

"God please let me nurse Hazaiah."

Just hearing that little bit of altered information has given me hope that maybe, just maybe, I'll get to- at least a little bit...

We go tomorrow to Dr. B for another ultrasound; it will be the first time seeing Hazaiah since that initial visit...

I also wanted to say that even though it may be hard for us to see those "swelling bellies" of "happy mamas", we are so happy for everyone who is having a healthy pregnancy. We wouldn't want anyone else to be facing the uncertainties and grief that we have been, and seeing other healthy babies gives us hope, comfort, and joy...

Thank You, God, for little babies...

The Sound of Charm

2011-08-01T07:10:00.006-04:00

"You lead a charmed life, my dear."

Those were the words my assistant principal told me one afternoon during drill team practice. We were all outside under the warm California sun and had taken a break to see the papers he held in his hand: our test scores and grades. I had somehow managed to pass another class after ditching almost the entire semester, and he knew it. I had always done fairly well with school, and it wasn't because it was getting harder now that I was a sophomore in high school; it was just that I was getting... well, bored with the academics; and the doughnut shop where a lot of kids hung out was right next door... But I liked drill team a lot! -and some of my classes were interesting!

After hearing his words, and finding out that I could still perform and compete the next semester, I looked up at him (he was a tall man!) smiled and chuckled a bit, and walked back over to practice my dance routine.

But his words stayed with me- mostly because I wasn't sure what the words exactly meant; or really, what he meant by those words.

I've thought about it since then. It was true: during those years things had a way of working out all right, and many times I was able to escape the adversity that loomed before me.

I was saved at the age of 20. For 5 years things seemed to go along smoothly- not without challenges, but without any major disasters or disappointments. I'm not sure if it was the naiveness of youth, or just the ignorance resulting from a lack of experience, but the days were fearless and it didn't seem like anything "bad" would happen!

Then I was widowed suddenly at the young age of 25, with 5 small children between the ages of 8 years down to 5 months- and we were clear across the country away from any of our family. To try to explain the shock of that time is beyond description... Grief, surprise, fear, surprise, heartache, and more surprise... Me? Really? This happened to me? But I was a Christian now, and it was time to apply the Biblical knowledge I had gained during the last 5 years. I was not alone. And I was not looking for charm.

Just as clear as I remember my assistant Principal's words, I also remember one recurring thought I had, after some of the shock wore off:

I'm amazed that God would so concern Himself with me, to give me something like this to go through...

It didn't make it easy. Many times, after the children were all in bed, I would lie alone in bed and cry uncontrollable, begging God to take it away and give me back the life I had. I didn't want this life. I would usually fall asleep soon, uncomforted, and hurting. And I would wonder where my Comforter was...

Weeping may endure for a night, but joy cometh in the morning...

That's usually what happened. I don't think it was ever "instant" back then- but the comfort and joy did come. And the children and I put one foot in front of the other and walked on, enduring adversity. Rejoicing at times, weeping at other times...

There was no charm now. But there was the reality of a life lived with Grace from the One who knew all things, and who walked with me and upheld me...

Five years later, my son was diagnosed with type 1 diabetes. I didn't know anything about the symptoms of diabetes. So when I noticed a few things "different" about him, I thought casually about taking him into the doctor. I was on the phone with the man I babysat for: he was telling me that he may not be bringing the boys that day. So I told him that it was fine either way; if he didn't bring them, then I might take Noah in today, but if he did need to bring them, I'd just wait til Monday, cause he'd be fine... Then I proceeded to tell him Noah's symptoms.

Talk about the providence of God! The man told me, "Whew, you'd better take him in today! Those were my symptoms when I was diagnosed with type 1 diabetes!"

So we hung up, and I laid back in the love seat with my arm across my face. The anticipation of what was coming overwhelmed me tremendously...

"Oh Lord," I thought desperately, "I don't WANT him to have diabetes."

What I meant was, "I can't face this. It's too much... I won't be able to handle it..."

But this time the comfort was instant. Up until this point, I don't remember ever receiving instant comfort right at the moment of tears, but here it was. God spoke so clearly to my heart, and calmed my emotions:

"It's going to be OK." That was all.

I got up, got ready to go, and took my son to the doctor. We were then told to drive to the bigger hospital an hour away, and to eat no carbohydrates on the way! (His blood sugar registered at 700, but that was just as high as their meters went- it was actually higher.) We then spent several days in the hospital, as they got his sugar under control and we learned all about this new challenge we would be facing every day, for the rest of his life.

Again, there was no charm to help me escape the adversity. We walked in it, and are still walking in it, daily. There are fears at times. His blood sugar has dropped dangerously low, to the point of nearly passing out, and has risen and stayed at highs that we couldn't seem to bring down. And for now, we do the best we can with it, pray for wisdom, and take up the extra challenge that life with insulin entails. He does really well actually! It's a moment by moment thing- but it gives him something that he must take authority over, subdue, and not let it deter him from any opportunity in life.

Another 5 years passes... Oh, this time it felt very charming! God sent Jason to love us- all of us- and take on the responsibility and care of raising a family: leading, guiding, encouraging, and serving. He does an amazing job! He is gentle with my emotions, observant of the children's needs, and we are learning by his example to give unselfishly. It is wonderful to be loved... But I knew it wasn't charm. God is good, merciful, and gracious; He decided it was time, and He blessed us with the gift of human love, and the privilege of having a husband and dad again...

And then, after 5 months, we had our first miscarriage- 8 weeks later, our second. I was shocked again! What is this? I've never had any miscarriages, and hardly saw it as a possibility...

We rejoiced, albeit a little hesitantly, in another 8 weeks- would this baby stay with us...? It was then 5 months into the pregnancy when we realized, most likely, he wouldn't...

So here we are, now at 6 months pregnant.

Charming? Hardly... Adversity? Yes.

It's funny though, as I think back over my years of youthful charm, compared with the years of learning to walk through adversity, I've much more security in the adversity: knowing that God is with me: believing His Word that all things work together for good to them that love God, instead of haphazardly flinging my careless decisions around and awaiting charm to come to my rescue.

I've learned too, that often the good we receive is not here and now. Oh, many times it is! But there is another realm that we lose sight of so many times. We look around at all the things that are temporal, and they are so important to us. But we forget: we are not made for this world. We have an eternal existence waiting for us, and it is to that end we need to gaze, while at the same time meeting the temporal needs of others around us, and rejoicing with those who rejoice in the special gifts of here and now, and weeping with those who weep in the trials and heartaches of the here and now. There is definitely a balance to be kept! There are many joys in life- some sweet, exciting, or charming... But when the sorrow or affliction come, there is comfort knowing that it's not over- there is more promised to us!

"And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away."

We have two doctor appointments this week.
The first is on Wednesday, with our primary OB. We have our routine test for gestational diabetes -of all things! :) And then we will meet in his office to go over the reports from the specialist 5 weeks ago. We haven't seen either doctor since then... I keep thinking, "If I was the doctor, I would want to do an ultrasound myself- just to see if I saw the same things!" But that's because it's my baby...
Then, the next day, we have another appointment with the specialist, for another intense ultrasound. We won't be having the echocardiogram, but there are certain other things they look for now that I'll be about 25 weeks- things they couldn't have seen before. And this doctor will do his own exam on the heart anyway... Sometimes babies with trisomy are born with their eyes fused together, and they can't open them; some are actually born without any eyeballs... But it's too early to tell with ours, since the eyes are closed in the womb until about 27 weeks anyway... I do wonder what all they'll find...
While I'm preparing myself for what I know is likely to happen, at the same time, part of me is still hoping that they will be confused- What? Everything looks normal! Your baby is fine! I know that's not too hard for God, and it's not asking too much from Him. But I don't know what His will is, and I'm learning to trust His hand, even when it doesn't make sense to me...

"Child of my love, fear not the unknown morrow

Dread not the new demand life makes of thee.

Thy ignorance doth hold no cause for sorrow,

Since what thou knowest not is known to Me."

The Sound Of A Propped Removed

2011-07-26T08:14:00.013-04:00

My children always tease me about my stress-reliever:
When disaster strikes, Mama starts cleaning!

It's true. When Skye was a toddler and pushed a button up into her nose, I started doing the dishes while I figured out what to do. When Noah was younger and cut his thumb with a knife, I started doing laundry and straightening up odds and end while I waited for Dave and Cora to come help.

So it comes as no surprise I guess, that we started Spring cleaning our house last week. You know, that kind of cleaning that only gets done once a year: everything from the ceiling, to the walls and windows, down to the floor, and in all the closets and cabinets! We actually haven't done it for about 2 years because we never had time when Jason and I were courting, and then planning the wedding and all of that... So it was pretty dusty! My allergies flared up pretty badly last week when we started; but now, we only have one closet in the living room to do, the entire laundry room, murphy's oil soap on all the cabinets and the table, the kitchen floor, and the kitchen sink. We're thinking it should take about 2-3 more days...

We were almost through with the living room on Saturday when the mail came. I saw we had a letter about the medical help we applied for. The doctor was sure there wouldn't be any problem, but the letter said our application was denied. I was a little confused... I knew I had accidentally applied for coverage for the entire family, and then withdrew that application and just applied for this pregnancy. So the letter said one of the reasons for denial was because I voluntarily withdrew my application. But then there was a line, and a separate reason for denial: Based on the size of our household, our income exceeds the limit for this program... It was Saturday so I couldn't call to talk to anyone; and immediately I felt my body sink with the weight of worry.

I really didn't think about it much after that. I told myself, and my family, "It's probably just because of the accidental family application. I'll call them on Monday..."

But I felt uneasy through the night, and had a hard time falling asleep. Sunday morning I didn't really feel very well, and had a hard time getting ready. Once I walked into the bathroom to start getting dressed, all of a sudden I burst out in uncontrollable tears! I cried and cried, and it felt so good; I realized the tension had been building up since the mail came the day before, and I was finally letting it go...The rest of the day passed smoothly, and we had a nice nap that afternoon, along with nice company that evening.

The children and I made plans to continue the cleaning Monday morning, but I had to make a few phone calls first. When I finally got through to someone who could help me with the information on that letter, she asked for my ss# and told me briefly, "Both applications were denied. It's all denied."

I was a little shocked, and explained to her the situation.

"We are self-pay," I told her, "And we had planned to pay for this pregnancy and hospital delivery; but the doctor told us that our baby has either trisomy 13 or 18 and that our bills were going to run in the ______ amount, and, after asking our income, he told us we should have no problem getting some help. We wouldn't have applied if it was a normal- or even a slightly high-risk- pregnancy. But this is so different..."

"I'm sorry," she said. But there was nothing else to do or say...

I hung up then, prayed for a while, and made a few more calls. After talking to another lady that works for a program that only helps children with chronic conditions, she told me, "I can't believe they denied you! I'll be honest with you, they know people can't pay those kind of bills, and they don't expect you to. There is another program that will help with the hospital care and the baby after he is born, but what you're going to do from now until then, I don't know..."

But I knew: I had gone over it in my head already, and Jason and the children and I had discussed it: We would cut way back on all the prenatal testing. We would pay for the routine care and extra ultrasounds to see as much as we could about the baby, and to be sure a vaginal delivery would be safe; but there would be no fetal echocardiogram or anything else like that. We would let our doctors know about the denial, and we knew they would do what they could. All along, I've known God doesn't need the medical field to take care of us, and to take care of Hazaiah; However, it wasn't until those moments on the telephone that I realized just how much I was trusting that medical assistance to keep our baby alive as long as we could- at least for a few days or weeks.

It's funny though, I was almost relieved when we knew without a doubt that we were denied. We had struggled a bit with even applying- not knowing if this was even what we should do. But there seemed no other way... And I knew I would always wonder, "What if God wanted to help us in that way, and we didn't accept the help He provided?" But now, there is no worry, no wondering. The door is closed and we won't walk through it. There is peace with a completely closed door.

And really: God knows what will happen and what we will even need. Our little Hazaiah could be born to early, with absolutely no time on this earth at all. Or, he could be healed and born completely whole and healthy!

And so I'm thankful...

And learning to trust in a different realm than before...

And feeling God's presence so near...

And cleaning furiously!

But today, we drive an hour away again; this time it's for Noah's 4month diabetic checkup.

Tomorrow I'll be cleaning.:)

"'Strength and dignity are her clothing, and she laughs at the time to come.'

"Satan dangles in front of her the specter of tomorrow's troubles, but she glances up at the almighty God at her right hand (her magnificent German Shepherd!) and laughs at Satan's folly."

-John Piper

The Sound of His Name

2011-07-25T09:32:00.010-04:00

God Will Decide

and we will

Praise the Lord

I remember when we were given the option of termination. I inwardly cringed at the words coming out of the doctor's mouth: he told us they don't terminate for a down syndrome child, but for trisomy 13 or 18, because it's fatal, they will... I don't hold it against him personally now, I know he is required by law to give all the "options"; but for us, it was never considered an option. I couldn't imagine purposely taking the life of our baby whom I could feel moving and kicking me every day...

We told the doctor, "We understand if it's fatal; but we're not going to do it ourselves..."

"God will decide," I thought.

We've prayed for healing. Perhaps not earnestly, and not with fasting, but we have asked, and are asking. God tells us in His Word: Ye have not because ye ask not.

And so we ask.

But it's all been such a blur of emotion that it's hard to know and to see what the will of God is. We don't know if it's God's will to heal our baby, but we have never, not one time, doubted that He is able to heal him. It doesn't matter what the doctors say; God is above all and over all. I have seen God answer many of my most simplest prayers: prayers that I have simply asked Him, and left with Him, and actually forgot about! -until the answer came and I realized: God heard me- and he gave me my request!

Those times have conditioned me to ask now, simply and quietly, for healing for our baby. I can ask, leave it with Him, and God will decide...

We have considered anointing, but my only thought that holds me back is that I'm not sick. Anointing is for those that are sick... So again, we don't know what God's will would be with that. Recently I had the thought that God is using my body to carry and form the baby, so perhaps it would make sense to be anointed, but I've seen people who anoint for any and everything, and I can't do that when God's Word give different direction for those other times.

When we are afflicted, we are to pray.

When we are merry, we are to sing.

When we are discouraged, we can encourage ourselves simply by reading and believing the written Word of God.

When we are tempted, we are to resist or flee- depending on the situation.

When we lack wisdom, we ask of God because He gives to all men liberally.

In everything, we are to give thanks...

And so even now, we know that we are to give thanks.

And so we thank Him; we praise Him.

Sometimes I tell myself that maybe the bigger miracle is not really the healing, but that God will take us through this situation and that we will be OK. We will rejoice in His goodness and we will love Him, and each other, more deeply.

But other times I know: the bigger miracle is that our baby would be healed.

It's just that I've wanted those bigger miracles at other times in my life (two times, to be exact) and have been denied. And God took me through the situation, and things have been OK, not without struggle and grief, but OK.

The words of another come to my mind- when she longed to go back to the time when "sorrow and loss were unimagined foreigners from a strange land":

"Your grown woman's heart, though scarred, is a much bigger vessel because grief has had it's enlarging work the little girl of yesterday was too small to contain..."

So we know that sometimes it isn't God's will to heal- like when he told Paul that His grace was sufficient for Him. His power was made perfect in Paul's weakness.

Sometimes God has what He considers a better plan.

Perhaps in our humanness we don't see that. We see how much glory God would get if He would just do the impossible. The doctors would be astounded! -and the child would have a testimony his entire life! Our vision is the here and now, the tangible. We have human loves and longings for things that are good and right. The love of a baby, a child, the love of a spouse, to do well in business, etc...

And the Bible commends all of these things!

But when things don't go as our finite mind thinks is best, we must lift our gaze to the Infinite, and trust the all-knowing One whose love for us surpasses all our human love, and whose perception sees so far beyond our limited vision...

And we must have faith that God Will Decide,

And we must decide that we will Praise the Lord.

Here is our precious little baby's name:

Hazaiah Jude

Hazaiah means: God will decide.

Jude (a form of Judah) meaning: Praise the Lord.

The Sound of... Guilt?

2011-07-18T09:19:00.005-04:00

I've read a lot of other stories lately of other families who have gone through the birth, and death, of a baby with Trisomy 13 or 18. It's helped me so much to read of the struggles, uncertainties, fear, disappointments, and love that these families have; and believe it or not, it's helped me to see the babies, with what we call "defects".
A lot of these stories I've found just by googling on the Internet.
So I'm writing this because I don't know who will ever read this- what you may face, and what you will feel as you face it. I want others to know that they are not alone with their feelings of fear, and possibly, guilt; While at the same time finding comfort in the fact that there is hope yet, for joy. Maybe I'm not there yet, but I've seen it in others. I've read it in the stories. -and I've experienced it in other areas of my life... Life goes on, and we learn to love, while letting go. We learn to find joy in all of life- not just in the one thing that was taken from us. And we learn to look forward, just a little more eagerly, to that Day, when all the wrongs will be righted and the dark things shall be clear. To look upon the face of Him who is Love Himself, and to know without a doubt, that He was with us- that He never left us nor forsook us. That indeed, He did work "all things together for good, to them that love Him".

I admit: I was scared at first, when the doctor explained to us what our baby looked like.
Facial clefts all the way up to the sinuses under the eyes? -what in the world did that look like? I still don't know... All the pictures I've seen have the clefts going into the nose- is that the same? Does the nose just "cover" the clefting further up? I don't know... I suppose I can add that to the list of questions for my next appointment.
I was scared. And at the same time I was horrified at myself... For I knew I was scared of how I would feel towards my baby... Would I gasp and turn away when I delivered him? Could I even handle holding him and looking into his face? Inwardly, I felt horrible: What kind of a mother am I? What kind of a mother would be scared of her own baby's face?
Oh, the guilt that washed over me...

And then I thought of other's reactions: Would they turn away? Would they glance quickly at him, politely express their condolences, and then turn to leave- later discussing between themselves, in hushed voices, the sight that they saw...?
"I don't want people to be scared of our baby..." I told Jason through tears one day, shortly after finding out...
"I know honey," he replied, "Don't worry."
But I did worry... And I went on the Internet and saw other babies. I had never seen, nor heard of Trisomy 13 or 18. And strangely enough, what I saw reassured me...
These babies were cute! They wiggled and squirmed and cuddled just like any other baby! They had the same soft bodies that I love to snuggle up to! And they were so tiny- I'd never had a tiny baby... And their cries were weak and soft, which is common with Trisomy; but it made them all the more endearing to me...
I knew then that I would be OK with seeing, holding, and even loving to look at, my baby...

And my guilt was replaced with forgiveness and understanding, by reading and seeing others who had those same thoughts...

I often wonder why this happened. Did I do or not do something I should or shouldn't have? The doctors and reports say no. It's just something that happens- a 1 in 10,000 chance.
But why?

As I was outside the other day, I looked across the field that meets our backyard- maybe just 70 feet from our house. They had chopped down the corn recently, leaving it bare and visible to see farther across... I remembered another time I was out there- shortly before they planted the corn. We had clothes hanging on the line then, and I noticed they were spraying something on the former crop (or weeds) to kill it off before planting the corn. I could see the mist of spray, and it didn't just land on the field. Since I didn't want it to drift over and saturate our clothes, I waited until the tractor was further away, and then hurried out there to get them all off the line- I wonder if I breathed in any...
It would've been right at the time I conceived...
Or what if I had taken better care of myself, say, 15 years ago? Would that have an effect on the quality of my eggs now?
Or all those cold winter days in my early pregnancy- I loved warming up in a hot bath. Was it too hot?
Was it something I ate? An activity I did? The stress I let myself worry about?
Or worse:
Was it a judgement from God over past sins...?

Yes, we are forgiven through the blood of Jesus as a sacrifice, but God still chastises those He loves. And I know that if it was a form of chastisement, that "He doth not afflict willingly nor grieve the children of men." His heart would still be yearning after us with a Father's love...

So I, perhaps like Job's friends, questioned myself, and pointed out my faults.
"But wait!" some may say, "Job never sinned! '...the LORD said unto Satan, Hast thou considered my servant Job, that there is none like him in the earth, a perfect and an upright man, one that feareth God, and escheweth evil?' The things God allowed Job to go through were not because of his faults!"

That's true... But I am not Job. There have been times in my Christian life that, after great disappointments or discouragements, I have given into the lusts of the flesh and not walked after the Spirit of God. I have been unkind, impatient, selfish, unclean, proud, or lazy...
And not only that- but at times I actually chose to act wrong! I was presented with a situation, already knowing good from evil- and I chose the wrong... Of course I felt horrible immediately after! Of course I repented, turned completely away, cried out with sorrow, and thanked our Father for the forgiveness He gives.

"And if any man sin, we have an advocate with the Father, Jesus Christ the righteous: And he is the propitiation for our sins: and not for ours only, but also for the sins of the whole world."

I know that my salvation does not depend on my righteousness: It is a gift from my Father that is entirely based upon faith in what Christ did- not what I do.

But still...
Is this now because of... that then?
The guilt washed over me again...

I don't know. I guess it's a bad place to stop, but I really don't have an answer! If it is, I know it is from a Hand of love and mercy. I know that I am His, and that what He does is fair.

And I suppose we all do, or don't do, things we regret. The book of Hebrew assures us:

"And ye have forgotten the exhortation which speaketh unto you as unto children, My son, despise not thou the chastening of the Lord, nor faint when thou art rebuked of him: For whom the Lord loveth he chasteneth, and scourgeth every son whom he receiveth. If ye endure chastening, God dealeth with you as with sons; for what son is he whom the father chasteneth not? But if ye be without chastisement, whereof all are partakers, then are ye bastards, and not sons."

And we were reminded by a friend:
"...what you are facing is not only to conform you into the very image of Jesus Christ but also to make you an evermore beautiful testimony of the grace and glory of God both to men and angels."

Some other friends, a couple in our church, gave us this book as a gift:

I was weighed down with some of these guilty thought one day, and I read this:

"Dear God, today grant me what You promised: a spirit of power, a spirit of love, and the spirit of a sound mind. I need a sound mind in these tough days. A healed mind. Especially, I need for You to heal my memories and inspire my imagination.
"Help me, dear God, to remember to forget some things and never to forget to remember others. I need to allow You to heal the hurting memories of the past: things I've done I should never have done, and things I've said I wish had never been spoken. Equally troubling are the things I wish I had not left unsaid or undone..."
This really encouraged me.

Is it God's will that we dwell over past sins? Even if we are dwelling on them with sorrow? Sometimes I suppose I justify myself for dwelling on them, because I am dwelling on them and telling myself how bad it was- and how sorry I am. But is this God's will?

God's word tells me:
"Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things."

Can I really be doing this if I am wallowing in sorrow for how I have sinned against God in the past? Or is this verse only for those who have no regrets...? Is there anyone?

It seems as though our enemy- or perhaps my own thoughts just struggling (I'm not one to "blame everything on the devil") especially likes this thing of guilt- because there seems to be no way out. I can't deny the accusations against me. I can't deny that God is just. I can't say "I deserve a healthy baby." (For where would we be if we ever "got what we deserved"??) However, I can believe the promises of God. I believe He is good, and that He loves me more than I know- more than I deserve. I believe that Christ presents me "holy, unblameable, and unreproveable in His sight." Not because I've continued in sinless perfection, but because I've continued "in the faith."

The other night I was laying in bed, unable to sleep, my thoughts in a whirlwind with different scriptures. What do I do? What is God's will in this? What is He wanting from me???

I wanted something to do that would make sense with where I am, but everything seemed to be "second steps", like as if I already knew the "first step".

And then, peacefully, I remembered:

"Is any among you afflicted? let him pray..."

Thank you Father...

The Sound of Normalcy

2011-07-18T07:22:00.011-04:00

About a week after we went to the doctor, I found out when our next appointments are. They want me to have a fetal echocardiogram, along with another intense ultrasound with the specialist; plus I still have to have routine care with my regular OB.
At first I wondered, if there is no hope for our baby, why are they going to do so many tests? But after I was home, and researched so much on the Internet, I realized that with a lot of care some of the babies with Trisomy do live a few weeks, or even months. And of course we want our baby with us as long as we can... I also read about another family whose doctor wanted to do an amnio because if it was Trisomy 13 or 18 then he didn't see any need to do any more tests- he would just let it go and let the baby die. Wow! That made me grateful for our doctor who wanted to do specific tests to see what problems we were facing!
So it turns out, that the only day of the month that the specialist and the baby heart doctor are both in their offices on the same day is the first Friday of each month. So that means that we wouldn't come back until August 5th- 5 weeks! And my regular OB didn't need to see me until August 3rd.
I was flabbergasted! How can they drop a bomb on us like that and then not say anything else for 5 weeks! But after the initial shock of that settled in, I could see more of a blessing in it: It made it possible for me to do my own research, prepare my mind a little with a list of questions, and "relax" as much as possible and just enjoy my pregnancy and our baby as much as possible...
Every kick is precious, every squirm is sweet, and I am constantly talking to him and rubbing him and trying to include him in our normal lives. I'm so anxious to hold him in my arms, but on the other hand, I know when I do it will be closer to the end, and I'm not ready to let him go...

The week following that first appointment, I hardly felt like doing anything... Once I did manage to go to the store, or put more effort into our meals, it wore me out so much that it would be almost ALL I could do for that day. The girls helped so much (and still do)! But then it was July 8th: Cow appreciation day at Chick-fil-a. For the past two years we've dressed up like cows and went there, and they give you a free meal and ring the cow bell and make a big to-do. It's actually a lot of fun (and a little embarrassing) and the girls all wanted to go again this year. (What we'll do for free food!)

I try not to let the little girls go to town much with the older girls alone because, well, I'm still the mom! -and I don't want them getting use to freedoms before their time. The older girls are great with helping with the younger ones, but I'm still the mom, and they need their mom... But I knew I couldn't face "cow day"; so I told them they could go this time with their sisters. As they excitedly cut out cow spots and ears, and painted spots on their faces, I was in my room slowly getting ready for a day at home. I started feeling worse and worse... They need their mom...
"I still need to be a mom to the 5 children I have", I thought to myself, "Even if they are happy to go, I need to be with them..."
So I put on my black skirt and white shirt and walked out to the living room.
"Anyone have any spots for me?"
I can't tell you how rewarding and heart-warming it was to see their happy, excited faces turn towards me, "Mama's coming too!!"

They quickly made a set of spots for me.:)

And then they had the idea to include our little baby in the day-

so Heaven made this sign for him:

Yes, I was tired... I had to go to the store for a few things afterwards, and we divided up the list again to make it as quick as possible. (It was a regular grocery store this time, so there was no threat of baby clothes.) :)

But it was worth it.

Last week I finished a maternity dress... I've had the fabric for over a month already, and I've made a sample dress out of some cheaper stuff (even the "good" fabric was only $4.). Anyway, the morning after we returned from that first doctor visit, I remember walking past the fabric sitting on the sewing counter. My heart sank. I would still wear the dress for the same amount of time, but suddenly all the joy seemed to be taken out of it that day...

Every time I walked by that counter throughout the day, it seemed to be glaring at me, almost mockingly...

Or was I glaring at it...?

There was no motivation to make those dresses.

But my regular dresses for church were hardly fitting anymore, so I had to do something...

Then one day, I just started cutting. Another day, I started sewing, and then this past Saturday, I finished it! Thankfully it came together easily, so I didn't have any added frustration.:) I saved my favorite fabric for last, so hopefully I'll get to it soon.:) It was actually therapeutic, as I listened to music and Jason came in every so often for a hug and a few words in between the different things he was doing...

He and Noah had ground up some deer meat, shucked some corn, and saved the worms! :P I went outside for a breather just as they were making chalk lines for a worm race. So I picked out which worm would be mine (verbally- I did not touch them!) and joined in...Hey mine won!!:)

Then in the afternoon Jason and I made salsa together from our tomatoes, while the children were just playing or doing different things...

It was nice.

Nice to have some normalcy...