We are Still Here

We went and ate lunch at the Ronald McDonald Family room today and the family cooking asked how long we had been here. We said four days and they said wow that's a long time! It does feel like a long time but not as long as our 132 days in the NICU.

Even with the two different reflux medications things haven't gotten any better for Rexy. If anything they have gotten worse. He is taking about an ounce on a good feeding, when he used to take about three and a half ounces. And feeding him takes longer and a lot more coaxing him into it. We switch back and forth between the binky and bottle to help him get in a rhythm and then get some milk down him. Since we don't see things changing in the near future we have decided to go home with a feeding tube. There are two different types of tubes they could do for him, a NG which goes through his nose into his stomach or a NJ tube which goes through his nose into his intestine. Pros and cons to both that I won't bore you with. After talking to the team this morning we are going to go with NG.

We worked with speech therapy again this morning and got some more tips to help him. Charlie and I are definitely feeling more equipped to handle it and help teach him good associations with his food. That being said I don't think we will be having babysitters for a while since tube feeding is more involved and when he does feed orally it needs to happen in a very specific way to keep making progress. Our awesome pediatric rehab clinic we already go to for physical therapy has a speech therapist that we have had several people at the hospital recommend.

Charlie and I have been switching off staying the night with Rexy and going home to be with Ellie. My mom has been awesome and watched her for us. It is important to us to keep her at home and away from the hospital since we are still in the middle of cold and flu season. And oh my I have heard so many horror stories of the flu this year.

To be totally honest I'm feeling a little defeated. The last two weeks of our NICU stay were to avoid feeding tubes. We stayed longer and were patient while trying to teach Rex to eat. We have had him home for three months, eating well and gaining weight. But at this point he NEEDS it, and I can't let my pride stand in the way of getting him what he needs. Yes they have brought up a gtube, but it wouldn't be wise to just straight to that without giving the more temporary NG tube a try first. I think Rex is just trying to teach me that even when you think you have things figured out you have to be flexible. You would think I already knew that things never go like you have planned (AKA the twins birth). But throughout this whole hospital stay I have been reminded that there is another version of this story, where we don't have Rex in our lives at all. He does have special needs and because of his brain injury he always will. I'm deciding to look at what we do have in our life instead of dwelling on all the things we don't have. We are blessed.