First off, I am writing this from my iPad, with one hand, while I nurse. There are going to be typos. Please deal with it however you can.
Most of you probably think we are sitting quietly at home in newborn bliss, sniffing our yummy baby and memorizing his every tiny feature. There is a little of that going on, and for that I'm grateful. But our reality is much more stressful.
I don't want this post to be all about complaining. But I do want to paint an accurate picture. We've been home since Friday afternoon. Since then, here's how things have gone.
Saturday we had a visit from our home nurse. Braxton's feeding tube had come out the night before, and we were waiting to have the nurse put it in for us (we fed with breast and bottle in the meantime). Putting the tube in was very traumatic. I'll leave it at that. Braxton's weight had gone down from 7,9 at discharge to 7,1. We were advised to increase his feeding supplements. His abdomen measured 33 cm, which is the high side of normal.
By Saturday night, Brian was noticing Braxton's abdomen seemed tight. By Sunday afternoon Braxton was measuring 35-36 cm (he was 36 cm when he was last admitted). We talked to the surgeon on the phone, made note of what to watch out for, and agreed to go in Monday.
Monday at the surgeon's office, weight was up to 7,5 so we felt better about that. The dr agreed that Braxton was very distended but decided that unless he got worse or wasn't keeping milk down, he didn't need to be admitted. He gave us instructions to be more aggressive with our dilation/enema routine, to try and get things moving.
It's now Wednesday, and things haven't gotten worse but they're not much better, either. Tomorrow we go in to see the surgeon again, and to hopefully do the biopsy that will confirm or rule out hirschsprung's disease. I am praying and believing for ruling it out.
In the meantime, yesterday we had a follow up apt with the pediatrician. Today we have a visit from occupational therapy. We also have almost daily visits from norco, bringing us medical supplies. Plus twice-weekly visits from home nursing. Plus visits from IT, the state-run infant-toddler therapy program. Plus I've been scheduling cardiologist appointments and hearing tests. Plus all the paperwork. I have a giant binder that I take wherever Braxton goes that's full of his medical information.
Things have been really hard on me emotionally. I hate that my baby has to go through all this. I hate that he is constantly tethered to oxygen. I hate that I can't just pick him up and carry him with me around the house or outside. I miss my kids. The three Middles have been gone for 12 days. They come home tonight, but I am also worried about how I will take care of everyone. Braxton takes up at least 1 1/2 hours of my time every three hours.
I am trying to do things for myself. I am getting a little exercise everyday, drinking tea, and clinging to a few scripture verses. I am hanging in there. But it's hard.