Joyce, Kathy, and Holly were Henry's nurses yesterday and today. And, I think that they are also on tomorrow. Yesterday was not a good day. I called in the morning, and Joyce said that Henry was fine but Cindy had reported to her that he had had a brady in the morning that required a blow-by. He hasn't had a brady that required oxygen before. He has almost always come out of the bradys himself or just needed a little stimulation. This brady lasted a minute and required vigorous stimulation plus blow-by.
My dad held Henry for a little bit in the morning before Henry had his weekly eye exam. My dad wasn't told the results of the exam. When I arrived, the doctors were in the middle of rounds. Joyce said Henry was fine. When I asked specifically about his eye exam, she said that his eyes had progressed and the doctors would talk to me about it after rounds. This bit of news sent me into a bit of a tail spin. Last week, his eyes had gone from immature to Stage 1 ROP (retinopathy of prematurity). Progression from Stage 1 isn't good. It was time for Henry to nurse, so we tried that. It didn't go particularly well. Henry didn't seem interested. And I was pretty tense. So Joyce gave him some breast milk through his nose tube.
Dr. Wispe came by with Hans. Basically, the results of the eye exam were that Henry has Stage 2 ROP that has stayed in Zones 2 and 3 of his eyes. This increases the chances that he will need laser surgery. Dr. Wispe used the 50-50 percent chance again (50 percent it will resolve without surgery; 50 percent that he'll need surgery). I was incredibly upset but trying to hold it together. Dr. Wispe said that the surgery has no baring on his survival. I told him that I am not worried about survival at this point, but I am worried about his quality of life. It just feels like if it isn't one thing, it is another. Henry will have another exam next week.
Henry started rooting about 40 minutes before his scheduled meal time, so I nursed him for several minutes. And then, I held him for a long while.
My sister Carolyn came by to visit in the afternoon. I was glad that she stopped by because I haven't seen much of her lately, and she is moving to Washington state in August. She got into vet school and is getting a scholarship (which is rather impressive considering that vet school is harder to get into than med school!). My mom came shortly after.
Jeff and I returned in the evening. Kathy weighed Henry at 1790 grams yesterday. She helped us get a bath together. Henry tolerated it, but he wasn't thrilled. He liked the water but hated being washed with the wash cloth. And, then Jeff kangarooed with Henry afterward. At one point, Henry looked like he was going to crawl right off Jeff's chest. He is pretty strong for a little fellow.
Today (Wednesday) was better than yesterday. My dad held Henry in the morning for 1 hour 15 minutes. Folks from Physical Therapy stopped by to check Henry out. Hans had written an order for PT to stop by because he'd read some articles on preemie exercises and was hoping that PT would have some suggestions. They didn't really have any suggestions and thought Henry's muscles looked good. I suspect that PT doesn't usually see people unless there is a major problem and aren't up on the literature that Hans was looking at.
I had a good chat with Joyce in the morning. She thinks that Henry looks good and wants to make sure that I focus on Henry's big picture rather than some of the negative stuff, considering that we don't know for sure that Henry will need the eye surgery. I know that she's right, but it is so hard to relax. I feel like every time that I start to relax, shit hits the fan (so to speak). It happened when Henry had to be put on steroids for his lungs (week 2 of his NICU stay). It happened when he turned gray (week 3). It happened when Henry was diagnosed with NEC. It happened when his temp dropped to 34.8 degrees Celsius. It happened when his blood sugar levels went wacky. And the list goes on. It is bad enough that he will definitely have at least one surgery before he leaves. Henry has bilateral hernias that will have to be repaired. And, unfortunately, the surgery requires intubation. We've known about this particular problem for a long time (since the first week of our NICU adventure, I believe). On the bright side, it is a fairly common procedure.
I had two nursing sessions with Henry today (one for his 11AM feeding, and one for his 2PM feeding). Thus, he didn't receive anything through his nose tube during those feeds. I was pleased that his heart didn't stop during the feedings.
Joyce has been working on getting Henry's oxygen down. She's attacking the flow rather than the air composition. She turned the composition to 100% and the flow down to .2 liters. When we left this evening, I believe that the composition was down to something like 58%.
Today is Jeff's birthday. So I left the hospital a little earlier than usual this afternoon (5PM) so that I could get home to be with him. We were going to go crib shopping but Jeff was waiting for some of the pediatricians to call back. He got a hold of one possible ped, who was leaving on vacation but called to answer any questions that Jeff had. Jeff liked him (and his first name is Henry).
Before I left that hospital, I ran into Penny who gave me some materials on brain development. She had done an assessment of Henry on Sunday when she was working. She thinks that he is almost ready for some increased interaction (e.g., hearing soft voices, maybe a non-moving mobile). If we are here when she gets back from vacation in two weeks, she is going to show us some infant massage techniques.
Kathy weighed Henry at 1815 grams tonight (4 lbs). She referred to Henry's weight as his birthday present to Jeff. It was an awesome present. Henry was asleep when we arrived. He open his eyes for a second but then went back to sleep. Kathy was very sweet in getting the room ready for our arrival. She took the old pillow cases off the pillows in our area and got a large back of bottle and caps ready (for when I pump in the room). Nice to have someone take care of the details for us.
We didn't stay long as Jeff was feeling like he is on the edge of maybe getting sick. Not unrealistic given that we come across sick people all day long in the elevators, etc. It was an OK night to leave early as Henry was sound asleep. The patterns on his monitors suggested that we was sleeping very, very well.
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