Update: May 29 to May 30

May 29th:

Today has been really hard. It was the first day that walked into the NICU and didn't receive outstanding news. Jack is struggling breathing. It is funny to say that because Jack has a respirator that is breathing for him. They are mostly worried because his oxygen levels have been going high and low a lot with the same respirator settings and he seems very sensitive to any change. He is no longer on room air (21% oxygen) going in through his respirator and has been going up to 60% oxygen in order to keep his blood oxygen levels in the normal range. He has become what the doctors call a "chronic" patient now. Basically that means that his breathing issues have continued for a few days now and it is no longer possible that it is just an anomaly. X-rays of his lungs show that he may be experiencing respiratory distress syndrome. They are now adjusting settings of his respirator and watching what happens. If things don't improve they will consider switching to a new respirator to see if that helps. It seems like this kind of thing is not unexpected, but it still is hard to take in.

They are also doing full blood tests to make sure that he doesn't have an infection or anything else that may be causing his breathing problems. They are also changing his feeding tube to bypass his stomach and put milk directly into his intestinal tract. Now that his feedings are getting higher and his breathing worse, they worry that he may regurgitate some of his milk and that the respirator will then push the milk into his lungs, so they are trying to limit what goes into his stomach. On a positive note, we got to see a glimpse of his eyes last night! It was only for a split second, but we'll take it! They are thinking that they may be able to turn off his bili lights today or tomorrow so we'll get to see them often!

May 30th:

Today went from hard to amazing in about 1 second. When we arrived at the NICU the doctor and nurse gave us an update on Jack's condition. Jacks oxygen needs have decreased over the past 24 hours (he is usually sitting between 30% and 40% oxygen going in through his respirator) and a new chest X-ray from late last night showed his lungs in slightly better condition. He is still on some pretty high settings on his respirator, but they are hoping that he will cooperate today and they will take some of those back down. But hey, at this point a move in the right direction is a move in the right direction. He also received another blood transfusion (his third) yesterday as the blood results showed him slightly anemic. Other than that his blood tests came back normal (no infection). Here is to better news than yesterday!

After the update Molly and were sitting with him. I think we may have looked slightly depressed because I feel like the nurse was being ultra nice to us. We were thinking about heading out and the nurse came over and said it was time that Jack associated our voices with something positive. The nurse proceeded to move his bili lights, pop off the top of Jack's incubator, take the side down off his incubator, and take off his eye protectors (I call these his sunglasses, just for future reference). She told us to hold him firmly on the head and the feet like we had been doing through the doors and to just sing to him, read him stories, and talk to him. She told us to pay attention to his facial expressions and that they would tell us how he was feeling because it was time that he started associating our voices with positive experiences. We got to hold him and be right next to his tiny little body for the best 90 minutes of our lives. We sang primary hymns, read him a book, and just told him about the great people who love and support him. You better believe that we treasured every minute of this. He seemed so peaceful. He opened his eyes a bunch of times (this was the first time we really got to see his eyes). It was amazing. Jack's oxygen levels stayed stable the whole time and it was a good rest from the constant beeping of the alarms saying his oxygen levels were high and low. The nurse came about halfway through (I thought she was going to tell us we needed to be done) and just said, "see, sometimes all they need is some touch and love." After about an hour and a half the nurse finally came over and said we should probably close him back up. She also said that now that he is more stable we will be able to that more often. I think Molly and I were glowing the entire time and we walked out of the hospital on cloud 9. I just kept smelling my hand because for the first time, it smelled like Jack.

Here are some pictures from our experience:

Our first family photo:

Jack and Molly:

Jack and me:

Jack's eyes:

Jack and Dad giving a thumbs up:

Overall, I would say it has been a good day!

As unexpectedly living across the country with a baby in the NICU has its fair share of financial implications a fund has been set up to help us with medical, living, and transportation expenses. Any gift is very appreciated, but don't feel obligated to give; however, do feel obligated to pray for us and/or send positive thoughts our way.