The Sound of His Life (Day 6-7)

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…