NICU week 3 June 8-13

Wednesday: His blood gases were not as good as they wanted them through out the night so not only were they not able to extubate but had actually gone up on his rate  I had my two week DR appt this morning and think I balled the whole way from there to the hospital. Days like this make me question whether or not he will make it or not and some times that is just too much to think about. When we got there he was still intubated. My mom met us there. She and I sat there with the little guy and talked to the respiratory therapist Kyle. He told us his CO2 was still high so they would either have to go up on the rate or the volume. I could not hold the tears back. This felt like a giant step back. Kyle helped Phil give Pierce a blessing. When the team came to round on Pierce the RT and NNP suggested going up on his rate and Dr Beserga said "No, we aren't going to get better gases on this little guy. Wean his rate and extuabute in the next couple of hours. He did it yesterday he can do it today." I was so happy. I wasn't sure if he was totally ready but I knew it was what I needed to hear. The geneticist stopped by and took a little evaluation of him. She couldn't really see anything except that maybe he has a small chin which could mean he has an obstruction with his breathing. They extuabted that afternoon and started him at 5L on the high flow. So far so good. 


Thursday: Phil went to work today. I headed up there early to see if I could happen to be there when the Neurologist stopped by. When I got there they asked if I wanted to hold him. Nana had been there up until a few minutes before and so he was all bundled and waiting. Of course I did. I sat there and rocked him for a good hour. He was wide awake and cooing!!! He also was taking the pacifier like a champ. I had to put him in the bed when the neurologists came. I say it plural because there wasn't 1 but 5, 2 students 2 doctors and a fellow. The fellow examined him, did some reflexes and even asked me to show her some of mine. It was kinda funny. After I asked "did I pass?" haha The attending Dr said he did look a little hypotonic but didn't seem overly worried about it. He said he would look over the MRI again, but basically there isn't much you can do about such a thing in such a young baby so we would re-evaluate in a couple of months, if need be.


Friday: Lucky little dude is being held by his Nana Joan daily now. He definitely has some voice recognition. He seems to always wake up for her and for us. We didn't go up until the evening today. Phil worked a shorter shift and we headed up there after. We talked with the NNP for a few minutes before they kick you out for shift change. He was great. He said he didn't think his tone was unreasonable. He has had some periods of desaturations and bradycardia. Those are definitely the bigger concern. Missy met us up there with some dinner. Her and Phil were able to see him get his bath. The geneticist stopped by today also and ordered a bunch of metabolic and genetic tests.     

Saturday: Today while we were there Pierce kept having desats and bradys. It was rather stressful. He had one while Phil was holding him and I think it kinda freaked him out. One episode got so bad last night they almost had to call a code blue, but instead were able to bag him and breathe for him until he recovered.  To help with these episodes they are keeping him on his sides rather than his back, in case these are happening from obstruction.  


Sunday: Phil and I took Koen up with us after church. Phil took him around to see some of the cool things there, while I held the baby.  He didn't have any episodes while I was holding him which was nice. I just want to be able to hold him all day long, whenever I want. 

Monday: They started him on a drug last night called Theophylline which is converted to caffeine in the body. This will stimulate breathing and open his airway. They said he had less episodes last night, and none he had to be bagged for. They are thinking of doing a sleep study to see if it is obstructive or central sleep apnea. They are lowering his settings on the HFNC to see if they can get him down to 1 so they can do the study in the NICU. If they cant then they will have to send him to the sleep study lab to do it. They went down to 2 L today. All metabolic labs have come back normal. We still have a few genetic ones we are waiting on. They are also saying they would like to do a swallow study before the try feeding him orally. Dr Beserga said last week he has a week gag, and the last thing we need is for him to aspirate. Our pediatrician recommended requesting this. She has been beyond amazing calling every day since his MRI. Helping us be more informed.