The first week was probably the toughest, but not because Holden was screaming and in non-stop pain, like I'd imagined. In fact, he was on pain meds the first few days, and then we were able to ween him off pretty quickly and he was his normal, happy self again, as if nothing had ever happened. The only reason I say it was tough is because, when we stayed overnight in the hospital, he slept on us so he could sit upright. They wanted him upright as much as possible, so that any blood would drip out of his mouth as opposed to down his throat. So when we were home, we tried to continue keeping him upright, by taking turns sleeping with him in a recliner. But he could never get comfortable, so basically he'd just move around all night and cry, and sometimes whack you in the face with his robot arms (because he now has to wear arm restraints to keep himself from putting things in his mouth). Needless to say, no one got any sleep. About 3 days in, we were miserable and could barely function due to lack of sleep. We called his plastic surgeon's office and they gave us the okay to put him in his crib at night, just as we'd done before surgery. I had been nervous about doing this, as I was afraid he'd chew on the side of his crib, or that screaming like he sometimes does when we first put him down could somehow rip his sutures or something. They assured us it was fine and we did it that night and, just like that, life got a whole lot easier! There are still nights where he doesn't sleep as much but, for the most part, he's pretty much back to where he was sleep-wise. Minus having to sleep with arm restraints on, of course.
Food-wise, he still gets his feed through his g-tube and can eat pureed foods, too. We're working with a local SLP to slowly get him to start drinking from a cup again. He'd done it a few times before surgery, but didn't show much interest, so we're pretty much starting over. While we can't wait to get his g-tube out, we have to play it safe because he still showed penetration in his last swallow study (which was back in March) and we won't do another swallow study until he's drinking at least 2 oz. from the cup. Which is scary to think that he could be aspirating and we might not even know until he's been doing it for a little bit. But I fully trust every doctor he sees right now and totally believe they all know exactly what they're doing to get him on the right track.
The holiday kinda messed us up as far as Holden's follow up appointments. Technically, he should've gone down on Monday (Memorial Day) and would (hopefully) be off all restraints, but he actually won't go back down until the first full week of June, so it'll be about five weeks post-surgery. So we're hoping he'll definitely be off all restraints by then - no arm restraints, no food restraints - which means it'll be boot camp time to work towards getting his tube out! I think he'll also be able to have his Puffs and yogurt melts again which are a life-saver when we're trying to keep him occupied during his feed or while we're eating.
We're not quite out of the water yet. Whenever Holden does get his g-tube out, we'll still have some work to do speech-wise, but there is finally light at the end of the tunnel. When Holden was born and we first started researching PRS, there was minimal information available. But many of the parents that I've been able to connect with always said, "The first year is the toughest." And, honestly, that couldn't be any more true. That is what gave us hope through the tougher parts of this. If you're a PRS parent reading this, know that! It does get easier. Your little one will be able to live a more normal life. This happens in some cases sooner than others. For example, some babies don't have to have a g-tube like Holden does. The light at the end of the tunnel is a bit closer for them. And some babies also have Stickler's Syndrome associated with their PRS. In those cases, that light might seem a bit further away. But it's there. So hang in there!
Some random pictures because why not...
Our method to the madness
So there are two doors in our house that have cat holes, like the one pictured above (from the previous owners). These doors annoy me and I want to replace them eventually, but for now they make for some pretty good entertainment.
Mother's Day 2018
The best part of early morning follow-up appointments? We found a hotel that we love and it's right down the road from a pretty sweet Target, as well.
Holden's 1-week follow up appointment was great!
And that's a wrap for now! Xo
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