Hi everyone. We are preparing for the boys’ first birthday, which is just 10 days away now! Holy cow does time fly. I’ll have another posting on their birthday, reflecting back on our first year, but I thought I’d post a short update for now on Samuel’s latest swallow study.
In case you’re out of the loop, let me quickly catch you up. Samuel had a PDA ligation procedure in February to close a valve that was shunting blood away from his lungs. The valve is part of his heart, called a Patent Ductus. The PDA is Patent Ductus Arteriosus.
That surgery is done via an incision near the left shoulder blade, on Samuel’s back. It just so happens that your vocal chord nerves run through this area of the back. And while the surgeon who did the surgery is world-class, it’s often an outcome that the procedure will result in temporary or permanent paralysis of the left vocal chord. And so far that’s the case with Samuel – his left vocal chord is paralyzed.
A recent scope down his throat hasn’t shown any improvement yet, but we’re hopeful it will gain some functionality with time.
Anyway, this means that his vocal chords aren’t able to function properly, which means it could impact his ability to speak, and swallow. If the chord doesn’t move, it won’t close properly, forcing food down your esophagus. Instead it may allow some food or liquid down your windpipe, which will aspirate into your lungs. This was a problem early on for Samuel that led to us making the decision to have the G-Port put into his tummy for feedings.
Let’s now fast-forward to November 29th – yesterday. We took Samuel in for a follow up swallow study, which is where Samuel is given different mixtures of formula and baby food that has Barium mixed in. These are fed to him while high-frequency X-rays are taken to watch how his mouth, tongue, throat, vocal chords, windpipe and esophagus all work together. The X-rays are about 30-frames per second, which is the same quality of TV that you watch at home.
Samuel was all smiles when we arrived into the X-ray room and got him situated, but it took a little time before the doctor arrived and that was enough time for Samuel to lose his cool. It took about 15 minutes to get him calmed down and to do the test, and then Kristen fed him formula, a thicker “nectar”, which was formula that was just thickened, an even thicker nectar and finally some Stage 2 baby food, which is what we’ve been feeding him for quite some time now.
The good news is that Samuel passed the tests with flying colors. The doctor and the speech therapist both said they saw lots of good things on the x-rays, and nothing negative. They liked how he held the food in his mouth and controlled the swallow in little bits, even with the thin liquids. They didn’t see any aspiration into the windpipe or lungs at all and they’re impressed with his progress. Of course they’ll go back and review the high-resolution footage at a slower pace to be certain that there was nothing negative going on. But Samuel gave us good cues too, since he didn’t cough at all during the feeding. It was all nice and smooth.
The result of all of this is we can now start ramping up his feedings with both a bottle and increased amounts of Stage 2 food. We’re going to go slow, starting with more Stage 2 food, which he’s used to already (and loves!). But we’re going to introduce a bottle into the mix now with about 20mL of formula. Of course he’s forgotten how to take a bottle, so we’ll need to work with him to re-learn that skill. He loves his pacifier, but this is shaped a bit different.
When we give him his food on a spoon, we also need to change the way we give it to him, allowing him to take it off the spoon instead of what we do now, which is kind of scrape it into his mouth via his teeth, gums or lips. Essentially we need to teach him how to eat.
This is all very encouraging and is likely the first step towards having his G-Port removed and having him eat like a normal kid. It’s likely to be 6-9 months at best before we can even talk about removing the G-Port, so we have a long road ahead. But if he advances quickly and is able to take all his feedings by mouth, obviously there’s no reason to keep that “button” on his belly. I know he wants it gone, and I desperately want it gone. We both hate it!
After the swallow study was over, we asked if we could stop into the NICU to say hello and the Speech Therapist walked us up. Of course they were excited to see us, though we didn’t get to see all the nurses and doctors who took care of the boys during their time there. But it was nice to see familiar faces we haven’t seen since April, in some cases, and I’m still stunned at how many people truly had an affinity for Samuel, Jacob and Charlie. Everyone told us we’re one of the unique families to come through the NICU, and you have to believe it based upon the turnout and genuine interest for the boys. It was nice seeing everyone and we look forward to seeing more nurses and doctors soon.