Day 50. 50 days seems like such a long time. Ive read lots of stories about babies who spent time in NICU and the longest seems to be 100 days so Id like to think we are half way there! On one hand it feels like so long ago that we arrived in Wellington on that dreadful Life Flight plane but on the other hand the days just go so fast and are so busy. However I often get to the end of the day, ready to write my update and will think of something that happened this morning then cant remember if it was today or a different day!! Everyday I plan to spend time replying to all the amazing, beautiful and inspiring messages I receive each day but there never seems to be enough time. Jack has had a reasonably uneventful 50th day. He is still having physiotherapy twice a day, before his 10am and 4pm cares. It is only for four minutes on each side so it doesnt take long. He is tolerating his physiotherapy much better these days and doesnt usually have any episodes during this time. I think he usually quite enjoys it actually. Jack has been put on the prongs twice today and really hasnt enjoyed this at all. He has cried and become quite upset but has calmed down quickly. He was even trying to pull at the straps holding them on! The CPAP prongs go a lot further up his nose and look very uncomfortable but they put a lot less pressure on his face (I will include a photo for anyone who is interested). When he has them on, his face still looks really squished but when they are switched over and I can see his bare face for a brief moment it definitely looks a lot better than when he was on SIPAP. Jacks oxygen requirement has been reasonably high today between 67% and 72%. Part of this could be that he is getting used to the prongs and they are just upsetting him. The lumpy areas on Jacks head, which was concerning the other day, have almost disappeared so was obviously caused by the tight SIPAP hat. Jacks milk intake was increased to 12mls at 12 noon. Jack continued to have bile today, although it was a lot more greenie. Unfortunately afternoon his stomach was looking really large and distended so the doctors decided to give him a break from his feeds. They also put his stomach tube on suction for six hours. This will suck out anything in his stomach, mainly bile and air. Hopefully his feeds will be restarted during the night. Over the last couple of days Jacks TPN (nutrition fluid through the longline) has been reduced each day according to his feed amount. While he was on 12mls of milk his TPN was lowered to 4.3 mls per hour per hour but was increased to 10mls per hour when his feeds were stopped. When he eventually gets to full feeds the TPN will be able to be stopped and the longline removed. It was a bit annoying having to see Jacks feeds stopped. I dont want him to be rushed and wouldnt mind even mind if he had to stay on 12mls for a number of days but I really dont want him to go backwards again with his feeds. I had another lovely cuddle today. I fell asleep for about 20 minutes I think. It was strange because when woke up and looked at him I was surprised at how small he looked. When I see him lying on his back in the incubator he seems really big but actually when he is lying on me and I can hold him with my hands Im reminded how tiny he actually is. We had a lovely cuddle and he cried for a moment when he had to be put back. I hate when he is upset but Im quietly pleased the end of our cuddles is sad for him too!!! When I said goodbye today Im sure he waved to me!!
Posted on: Wed, 15 Oct 2014 12:42:36 +0000
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