What a day.. It has been filled with mixed emotions.
I got in to the NICU today to see that they fed Aiden again.. Hmm ok that works, but then to find out it was going to be stopped again because the doc that was on felt the current attending who was off for the week end, didn't plan to feed Aiden until after a contrast study. She also thought that surgery told us they wanted the study first too. When I talked to his nurse I had mentioned that from what I was told by the doctor and by surgery was that it was the doctors choice to do a trial feed again first but that is what they would do to, and that the doctor agreed with that. Then just the other day, one of the docs on, told me she was pushing for the feeds first to see what happens before the study because the study could be inconclusive.
Long and short of it, the attending on yesterday agreed to continue feeds (2cc every 4 hrs) as long as he doesn't do anything "funny". If anythng funny happens then they will stop.
On that note, Aiden got feed at noon and at 4 he digested it, then at 4 he was given breastmilk, and at 8pm it was still in his belly. Because it was not bilious, they put it back in. At midnight it was digested so they gave him another 2cc's. She checked again at 4am and he had 1cc left, so it went back in and she added another cc of milk. So as it looks right now he is digesting the milk, just a bit slow. Fingers crossed he keeps it up and can increase to more then 2cc's at a time.
The bad news for today was Aiden's IV in his left leg infultrated and because it had the nutrition solution in it, it burned his skin. It was leaking so they went to go check it. When removing the tape a blister had formed and was full of the nutrition liquid (the infultration) and popped burning him. He now has no skin (the size of a nickle) on the back of his left leg. This may seem like a small size to you but Aiden is tiny so it's big to him. You can't see muscle, which is good but it looks so sore and is going to take some time to heal. They consulted plastics, so lets see what they say and think. So as you can imagine, we are losing IV access with Aiden. The talk is, and his night nurse is pushing for, a central line to be put in. First we need to make sure the cultures for the yeast infection stay negitive before they will put one in, but at this point he needs it. He has no more options. The scary part about a central line is he once again has to go under and have surgery to do it. The benifit of having it is he won't have to have the IV's in like now, but the draw back is putting him out again.
I just worried. Aiden is getting sick from not eating. His liver is taking a big hit and causing the jaundice and now the IV situation and the burn to his leg. I was just very emotional today. He needs a break, something has to give already and give the poor kid a break. It just breaks my heart. Today he was so upset when it was diaper time because his leg hurt and he didn't want anyone touching it. I felt so bad that after I calmed him down I went to call Chuck and just broke down. It kills me to see him upset and know there is nothing I can do. I so badly want to hold him and make it better. I just want to take him home, and everyday it is getting harder to leave the NICU without him.
I'm very overwhelmed at the moment. I'm super tired, I constantly feel "guilty" if I'm not there all the time, and it seems like when I am not there somthing else happens. I just miss him and I'm so worried about him I can't think straight. I try to look forward to him coming home by the end of Sept or so, but I know if he's not eating he's not coming home by then. I just want him to get better and be ok. So please all, keep praying for him. Keep sending them "happy" thoughts. I know AIden is strong, he has proved that over and over to me and sometimes I think he is stronger then I am, but right now he needs a big break.
2 comments:
Gosh he is a strong little man. I am sorry you are feeling so low, it is only natural. Try to remember that he needs positive energy from you, his mommy. I am sending you good thoughts all the way from Vancouver, BC. I check this website every day and can't wait to read that he is going home. Hang in there.
The most important person who needs to keep "happy thoughts" flowing is you. You are his lifeline. He is a part of you. You gave him life. If there is anyone whose energy Aiden is drawing from, it's you. Please take care of yourself. I can only imagine the emotional roller coaster you're on with it's ups and downs. But you will not be benefiting your son or yourself if you don't take care of yourself. Your lack of sleep is also greatly affecting your ability to stay focused and stay strong. Aiden, I say a special prayer for you every night. I believe in you and your strength to pull through. And when your mommy and daddy can't be there with you, I believe that your brother Chase is....watching over you, holding your tiny hands and keeping you safe. As always, my love and prayers are with you all.
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