Sounds of Life: The Sound of His Life (Days 1-4)

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!