June 12 Update

Brittney PhelpsJune, Uncategorized, Updates

Today was a bit of a rough day. He had his 4 month well-check appointment. His weight trajectory isn’t looking too great, so we are going to need to switch up his feeding routine a bit, which is a bummer. One of feeding therapists had thought we could stop fortifying his breast milk but it looks like we will have to go back to adding a special formula to his milk for the extra calories as well as the calcium and phosphorous for his bones.

We also need to make sure he gets a feeding during the night even if he doesn’t wake up wanting food. I typically go by the philosophy that if a baby is hungry in the night, he will wake up and let you know, but at least I can just do a tube feeding instead of waking him all the way up to take a bottle.

Matthew is also most likely going to need to get a cranial helmet. It’s not a huge surprise given all he’s been through and all the time in the NICU and not being able to do tummy time for two whole weeks after his surgery, but that was still disappointing and a bit overwhelming to hear. It’s not our first experience with helmets, but hopefully it will go more smoothly this time around.

The last thing we learned today was that Matthew might need to be on higher oxygen. In fact he might have needed to this whole past month potentially. So we are trying to figure that out right now but our monitor that tracks his pulse/oxygen is giving us some trouble. That will be tomorrow’s goal…to figure that out. We didn’t really get any instruction about how to manage/adjust his oxygen levels from Primary Children’s which would be surprising except that our entire experience there was one big nightmare, so we actually aren’t surprised at all.

So, that was our day 😮‍💨, and poor Mattie got his 4 month shots and I’ve never seen the kid so sad…except for maybe when the nurses forgot to give him pain meds after he came out of surgery… 😳. It was the saddest thing, but eventually we got him calmed down and he slept it off. Really grateful for his G-tube on days like today when we can just let him sleep and still get him his food. 😃

Also grateful for Vovo (Grandma) who planned a fun day for our other kiddos and also brought us a delicious dinner…and for an angel friend who came over and made the afternoon a little brighter for us🥰

Matthew getting to meet a dear dear friend of mine who’s basically my soul sister. She had a baby boy just 10 days before Matt was born and we are convinced they were best buddies in heaven. Maybe Matt didn’t want to be left behind, so he decided to come early so he could hang out with little James again.
Finally asleep after about an hour of crying 😢 which is so unlike this kiddo. He has the sweetest, saddest little cry that just breaks and melts your heart at the same time🥰

On a brighter note…Matthew had an ophthalmology appointment on Friday at Primary Children’s Hospital. He was screened specifically for eye conditions common with kiddos who have trisomy 21. Our trip down there was an adventure, but he was amazing, and the doc didn’t find anything at all unusual with his eyes. He said that he sees a lot of kids with Down Syndrome and that they usually at the very least have really goopy eyes from clogged tear ducts, but Matthew didn’t even have that. He said we couldn’t wish for his eyes to be any better than they are. So that was great news!