The Sound of His Life (Day17)

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...