Sometimes I forget that the world keeps moving outside of the bubble I have been in. In fact, today is my sister’s wedding. She has had her own trials in life, and today she is marrying a wonderful man. Jason not only loves her deeply, he treats her children like they are his own and obviously cares for the rest of us. As an extra bonus, he has two beautiful little girls to add to the mix. We really are a “more the merrier” kind of family and we are so happy to have them officially join our crazy group.
Unfortunately, the wedding is in Hawaii and we can’t be there. In honor of the wedding (at least in my mind), Lyra is making major progress today! She is totally off oxygen and doing great with her oral feeds (aka drinking from a bottle).
Tonight, I have two things to celebrate. My baby is getting better, and we will be joining my family via FaceTime for my wonderful sister’s wedding. I am even dressing my little one in the dress she was going to wear if we had been able to go (pictures to follow tomorrow). I feel very blessed today.
Today I feel hopeless. Over the last 36 (ish) hours, Lyra has had more and more trouble with feedings, despite the NG tube. In fact, she has totally thrown up the last two feedings. One happened in the middle of the NG feeding and the other happened just after the feeding finished. My husband and I feel defeated and frustrated. We are doing everything right, and getting nutrients into our baby girl continues to be so challenging. If I had the energy, I would cry. It’s just about time for another feeding and we don’t know what the game plan is. Are we going to try to feed her yet again just like we have been? It doesn’t seem logical. Obviously, what we are doing isn’t working. At least if she becomes dehydrated, we are already in the hospital.
The doctors think this complication has to do with her reflux. We are caught in this spiral where her reflux makes her laryngomalacia worse, which makes her reflux worse. She obviously doesn’t feel well, but she also acts like she is hungry. It’s heartbreaking to watch feedings start with her bright-eyed and eager, only to watch the feeding deteriorate to her obviously being in pain, and ending with her throwing up. The doctors seem to have some possible solutions, but there is no simple answer. It’s not an algebra equation where we plug-in “x” to get result “y”.
Right now, I am just exhausted in all possible ways. I spent the night here last night and barely slept. Although I have tried to take naps, there just never seems to by time for me to really sleep. I would go home, but she is being evaluated by a surgical team tomorrow morning, likely before 7am. I am scared I am going to be miss them if I go home to sleep. I try to be here for every evaluation by doctors and every shift change.
Hopefully tomorrow we get a solid road map for how to deal with the laryngomalacia.
Hopefully soon she will keep a full feed down.
Hopefully Mommy and Daddy with get some sleep.