Day 113: June 7th
I heard back from Ryker’s neonatologist.. She confirmed that in the study, they found that he does what is called a deep laryngeal penetration when he sucks, and no matter how they turned him while he ate, he would do the same suck. As mentioned yesterday, this puts him at risk of aspirating into his lungs.
They were also able to confirm his issues with reflux through the study. So they’re now teetering on doing surgery to deal with both issues before we get discharged.. UGH!
They want to do a procedure for GERD, which essentially takes the upper portion of the stomach, wraps it around the esophagus, and stitches it all together. This would help with his reflux in preventing his food coming back up… They are also talking about doing a G-Tube as well. This means we would no longer bottle feed, and just tube feed him directly to his stomach through a “button” on his abdomen.
His neonatologist said we can give it some time to see how he does in the next week or so.. If he is showing signs of improvement in terms of eating his full bottles and keeping his food down. We’re REALLLY hoping this is the case… he does NOT do well coming out of surgery, and I’m dreading dealing with a repeat of last time.. Not to mention, we’d likely start back at square one with his respiratory care.. So who knows how long we’ll still be here in Denver…
On a positive note today, Nick and I took the girls to the zoo today for the Ronald McDonald Dream night. It was an incredible evening of feeding the animals and getting more one-on-one close encounters. It was a much needed relaxing evening with our little family, especially after the news we got earlier in the day.
This last photo of Zylee was from the 4D movie we saw before we left. It was about planet earth and included sights, smells, and other sensations. One of them being sprayed with a mist of water during the watery scenes. Zylee was sitting on my lap, and was leaning forward onto the railing in front of us where the water would spray from. That goofy kid would lean forward right when it would spray, she would jump in shock from being sprayed directly in the face, but then bust out laughing once she caught her breath. We were all laughing so hard. I think any other kid probably would have flipped out and screamed. Needless to say, she left the 15 minute video soaking wet!