Follow Your Motherly Instincts

It has been an eventful couple of days. Two nights ago it was mentioned that now that he has had his surgery, maybe his feeding issues were all gut issues and one of the nurse practitioners wanted to go back to a formula Easton struggled on. The one I told them I thought he was allergic to. I didn't feel comfortable with that. She said we could talk about it the next morning. Morning rounds happened the next day and the cardiologist mentioned we were changing back to Elecare. I was surprised as I had expressed I didn't feel that was good. The nurse practitioner shook her head and said yes. They left and I wanted to know WHY we were even trying this with all the feeding issues we have had and we know this Vivonex TEN is working. The NP came back to discuss it with me. She said the Vivonex isn't meant to be taken orally. Ok, so it was my understanding that if I wanted him to ever feed by mouth we needed a different formula. I should have gone with my gut.

Night time hit and it was awful. Easton was in so much pain and there wasn't anything we could really do to stop it. He was already on Tylenol and a pain med, we gave him gas drops, and tried hot packs. He was miserable. I have never seen him so uncomfortable and in pain. He cried and cried. He was up all night. Myself and the nurses and techs took turns holding him throughout the night. The slightest movement and he would wake up. He didn't want you to sit, but to stand. The nurse even thought it was the formula because she had him the night before and he had never been like this! Finally around 3 am I said that was enough and had them contact the nurse practitioner. I wanted him off the Elecare. I wanted pedialyte for a few hours to give his belly a break and then to get him back on what worked! He continued to be in pain, but as time went on the next day, today, he became more comfortable. He is back to himself and sleeping well. Why don't doctors trust parents more? And why don't is parents believe in ourselves enough to put our foot down!? The NP on today said she never would have changed anything and isn't sure why the other did. She spoke with dietician and she said he CAN take the Vivones orally, it just tastes bad, but so does the Elecare. My goodness! All that just to put him in pain! We would have gone home tomorrow had this not happened. Now we are back to figuring out feeds.

He did take 4 mls of a bottle yesterday. Not much, but a huge step for him. It has been months since he has taken a bottle. He more chewed on the nipple than sucked, but we will work on that. He didn't gag, choke, puke, or anything. They were very please. Today he didn't do as well, but with last nights tummy issues, I wouldn't have either! We will try again tomorrow. Hoping to move feeding tube to ng in a week, if tolerating the nj feeds. Then a week after that if all is going well we can start doing some rice cereal/baby foods. I hope it goes well, but who knows at this point. Physical therapy has also been in to work with him. He really is doing well. 

He has had a low heart rate through the day and even lower (low 90s) when sleeping. His heart rate will lower as he gets older, but it will be watched closely in case he ever needs a pacemaker put in. (What a journey! We are learning so much!)

We hope to be home by the end of the week and I can't wait! I sure miss seeing my other two boys everyday too!