The Sound of His Life (Day 5)

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…