We've had a bit of a rough weekend. Ethan has had a few issues pop up, in what seems, out of nowhere. Some of these issues are probably harder to take just because Ethan has been doing so well....I mean, we got through a full month without any set backs, so we were blindly hoping that we were out of the woods. We learned that things can change very quickly and has reminded us not to take his progress for granted.
It started yesterday. Jon and I were on our way to the hospital when we got a call from the NICU. What the doctors had been telling us would happen finally did... Ethan needed a blood transfusion. He's been borderline for awhile, but always pulled through. But, he was especially pale that day, the nurse explained, and he had been having more than normal desats. I can't even count how many times our doctor had told us this was most likely to happen at some point, so I thought I was prepared. But, I learned quickly that you can't really prepare yourself for this type of thing. We got to the hospital and went through the standard talks with the doctors and signed the consent form. Everyone assured us that he would be more alert and feel better after, but ugh...really? The little guy doesn't deserve any of the poking and prodding that he gets already, now this. I had to leave when they started to put the IV in. I can't watch them put needles into his little arm. It's unbearable.
The nurse called us back in the room and we started to feel better as Ethan was calm and border line sleeping. If he can handle it, we should be able to as well, right? I was able to hold him while the transfusion was in progress. This also helped me by feeling that I was comforting him in some way? I realize that this might be more for myself than for him, but I hope that it helped in some way. By the time we left the hospital last night, he was looking better, much more pink and rosy and only then, did we realize that he had indeed been pale..the transformation was definitely noticeable.
So, we thought this was the worst of it. We ran some errands today and got to the hospital a little later than expected. We did call in to see how he was doing and the nurse said he was fine. He had gained another 10 grams and is at 2lbs 8oz. When we got to the hospital, our nurse came up and gave us the run down. Ethan had still been having a higher amount of desats, but it seemed like they were happening when he was being fed. So they were going to pump his food in at a slower rate to hope that this took care of the situation. She also mentioned that he hadn't had a stool for a long time. She decided to give him a glycerin chip...meaning she put this up his little butt. Ugh. But again, we seemed to be more upset about the happenings than he.
Just when we thought that that was going to be it, the nurse was doing his checks and checked if there was residual left from his last feeding. Usually, he has nothing left to maybe 1ml...he has tolerated his feeds like a champ ever since they started feeding him through a gavage. So, I was pretty shocked to see quite a bit come out of him. Not only was there a lot, it was a light green color. I guess this is because of the bile. The nurse stayed calm but went to talk to his doctors, who then in turn ordered an xray.
The results of the xray showed that there was indeed a lot of stool build up, but they were unsure of why he would have so much build up or why there was so much bile in his residual. So, they are going to do more tests this evening and another xray once he has a stool. The doctors talked us through all of this but I'm still confused on what they think it may be to be honest; they went through so many possibilities. All we know is that it might be an intestinal issue and he may have to go on antibiotics. They stopped his feedings and will be providing his nutrients through IV again until they figure out what is happening with him.
The positive out of all of this is that Ethan doesn't seem sick. He is comfortable and his tummy is not sensitive at all. We are supposed to call back later tonight to see if they have any further information for us. I will post an update tomorrow morning if they are able to give us answers on what is going on. In the meantime, please keep him in your prayers.
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