Day 121: June 15th
I’ve fallen behind on my posts for the last week. Between balancing girls, work, and working with little man’s care team, I’ve been super busy. I don’t recall the specifics of each day at this point, but I’ll lay out where we’re at from my last post.
The subject of the Nissen & Gtube surgery has been lingering for the last week. They mentioned that the surgery would stop him from refluxing, but we would not stop bottle feeding. Their fear is that he as at high risk of aspirating due to the combination of his irregular swallow, and throwing up his feeds. So they just want to make sure he is safe, and reduce his changes of landing himself back into the hospital. Our biggest fear more than anything is having to put him under again, considering he flatlined every 2-3 hours post op last surgery, and had a lot of dramatic Apnea and Bradycardia events after the first surgery. After many tests, they had no answers as to why he did so.. I fear how far it’ll set us back respiratory wise, and honestly, if we’d go through a similar experience. Not to mention he’d be on another dose of antibiotics, which last time he developed a super bug and needed the stronger dose.. So we’ve put in a request to look at all other options before we consider surgery. Tori had put in a request that we sit down with his care team on Friday to discuss options.
They decided to do small changes throughout the week. They kept him on enfamil fortifier the last week and a half. He’d seem to have large throw ups once a shift, throwing up anywhere between 30ml-55ml. He’s currently eating 70mls. So they decided to give a new formula called alimentum a go. It’s supposed to have the same protein as the commercial grade human milk fortifier the hospital uses. However it has a strong taste and smell, and often times infants do not tolerate it. Ryker was one. He would eat about 25ml’s and then give the most disgusted look. He was only on that for about 30 hours before they suggested going back to the enfamil. I received a call from his attending doctor, Dr. Sherlock, who said she spoke with one of Ryker’s neonatologists from UC Health where he was born. He suggested giving a thickened formula a try to see how he tolerates that. They were feeling very optimistic about the option, and possibly give us a chance on avoiding surgery (at least for the time being). On the first feed he downed his whole bottle, and kept it down. He proceeded to do the same for the next bottle, and through the night. He did have 2 spit ups in the evening, but ranged between 10-19ml’s. This was SMALL compared to how he was doing before. His primary nurses expressed that he actually slept between meals and seemed like a totally different baby! Things are looking up.
Our meeting on Friday went totally different than we expected. We expected we were going to be talking the route of surgery, and expressing our concerns. However, the meeting was about how well he was doing on the new thickened formula, both for volume and keeping it down. He had pulled out his feeding tube the night before, so they decided to keep him going without it. They said if he continues to make this sort of progress over the weekend, that discharge could be early next week! I’m not going to get overly excited yet, but it’s super exciting news! Last night he did have a fairly good sized spit up, but he also hasn’t pooped since midnight on Friday.. He tolerated his feeds all night with Nick, no more than a wet burp. He did spit up a small amount for me this morning, although it may have been partly my fault that I didn’t pace him enough. He sucked down more than half his bottle without a chance to burp, and I think it just didn’t have time to settle. Plus, he’s been constipated for the last 36 hours.. Poor nugget. They said they are going to start him on prune juice to hopefully get things moving as a more natural approach. Here’s to crossing fingers we can get him to poop and that the rest of the weekend goes well!
As far as respiratory goes. A big concern was his pulmonary hypertension. He had previously been dropping his sats in a matter of minutes and failed the room air test miserably a couple of weeks ago. Well, I got a call Wednesday evening from Tori. Dr Sherlock had requested to do a ‘fake’ room air trial again and Tori said he passed with flying colors. The lowest he dropped his sats was 74% in a 45 minute span. WHAT A DIFFERENCE compared to the week and a half prior, when he dropped his sats into the 60% range after 3 minutes! I had to ask if she was sure she tested the right baby! They mentioned in the meeting on Friday that since then, they did the trial a few more times just to be sure, and he passed every time. We’re so proud of our little man! We honestly need to keep in mind that time is on his side. Even with the pregnancy, had we not given him the time to prove himself beyond every obstacle we encountered, he would not be here today.
PT is also pleased with he progress he has made in the last couple of weeks as well. He’s working rotating his head more, is able to keep his head up when propped in a sitting position for a long period of time, and is rocking tummy time.
I’ll continue to update as we get through the weekend.
Here’s a few pics from the week…
