Friday, June 3, 2016

100 Days in the NICU - June 3rd, 2016

Today was rough. Not rough for you, but for me. Today marks 100 days in the NICU. It got me thinking. That is 100 days where I had to leave you every night (There were a few days I slept by your isolette). It had me thinking that every single day when I leave, you lay there without anyone snuggling you. I cried on the way home from the hospital today - all the way home. I hate knowing that you aren't getting all the cuddles that you should be getting at this age. I do my best when I am there - but I am not there 24/7 and I wish I was. I can't wait for you to come home. I am not going to want to put you down at all. I don't care how many people say "you shouldn't hold him all the time - he is going to get used to that and not want you to put him down." Some people may say that I will regret doing that - but the only time I will regret is the time that I didn't get to cuddle you, change you, feed you, and just be with you while you were in the hospital all this time. You are only this little for a short while and I am going to make the most of it since I have lost so much of that time. And I continue to lose it every single day you don't come home. I will never get this time back.
I called this morning before I came to see you and no one answered again. When I got there the nurse told me that you had 5 total events over night after not having events for 24 hours. You did so well with me and the day nurse. I wanted to see how you did at 9 am to see if maybe it was just the night nurse, or if you really weren't doing well with your feeds. Speech came to see you for your 9 am feed as well. You get really excited to eat (which is adorable by the way) but it doesn't help you because you don't want to stop sucking. She said that since you were trying to continue sucking, to give you one or two extra sucks to see if you would pace yourself better. You didn't, but you also didn't have any events when I fed you. I asked what we could do since you weren't really getting the hang of eating like she wanted you to do. She said that it is really hard when so many different people are feeding you. She said that since I am the main person that will be feeding you at home, she doesn't think it makes sense for you to stay in the hospital if you aren't having events for me. She said that it isn't possible to have one person feed you every feed (unless I stay there 24/7) and that you are a difficult baby to feed. You don't show any cues that you need a break - you like to keep going and going and so anyone who is new to feeding you doesn't know to stop. She said that if you are still having events on Monday, that we will schedule a swallow study. She doesn't think it is going to show anything, but she wants to do it just incase there is something they are missing.
The doctors rounded and I told them about possibly scheduling the swallow study. They seemed to think that was a good idea. They also asked if we tried feeding you every other feed and I told them that we spoke about that yesterday but we wanted to see if giving you more breaks would help first. Since you haven't went to the bathroom in a couple days, they upped your prune juice intake to twice a day. Since you were straining, they gave you glycerin, and you went to the bathroom twice since then. Hopefully you feel much better now! The doctor said she wanted to see if that would help with your feeds as well since you weren't straining anymore. Maybe less episodes. Other than that, nothing else was changing.
I held you from your 9 am feed until 11:30 when they gave you the glycerin. Then I fed you at noon. You had a really quick episode that the nurse didn't bother documenting because she didn't see it and because your heart rate didn't drop much. Those are the types of events you can still have and come home.
I had to pump and then eat lunch, but after that I held you until daddy came to get me. That is when the crying started. I miss you as soon as I leave. I don't want to leave. I only want to leave with you.
I can't wait to see you in the morning and hear how you did. I am hoping you have less events (none are preferred) and I am hoping you sleep well. We love you so much. I can't wait until you come home and see how much better it is at home.