Day 68 (34/1)

6:04am – Text Message

“It’s a beautiful morning here I’m the clear box house I live in! I had a terrific night mom and dad! What’s that you ask?? Why yes, yes I did get a gold star for the night…that makes three in a row!! ⭐️⭐️⭐️!!!
Since I’m such a grown up boy at the ripe age of 34 weeks, I graduated in a couple areas…I had to get a bigger blood pressure cuff cause my legs are getting chunky and I now have new sat parameters I have to follow, I can’t let my SpO2 get lower than 85%! It’s gunna be a challenge but I think I’m up for it!
Overnight I didn’t let Nurse Kelly go as low as she wanted on my O2 but I maintained at 28-32%, currently sitting at 30% 😎 and and and guess what!!! My gas was awesome this morning again and Dr. Lipsky made some big changes! Not only did she go down on my rate to 25 but she let my pressures go down even lower to 13/6!! 🙌🏻🙌🏻🥳🥳
My tummy is feeling great too! That thing they put around my belly says it’s within the range I’m normally in anywhere from 24-26cm…I really don’t know everyone cares so much about that but hey if it gets me on the good boy list I’ll take it! Man this week has been awesome with no Nurse Kelly timeouts…just gold stars 🌟
My head also still looks great this morning with no changes, I tell you what though mom and dad…I think Nurse Kelly is a little obsessed with checking on it, she’s a goofy one 🤓
I’m getting ready for my eye exam, I’m basically a pro at this point so no need to worry, I got this!
Anyway I think that’s all for now, I can’t wait for more snuggles today this morning!
Love always and forever
Your cool little dude”
Asher 💙

Updates

According to Dr Bragg (Neuro), Asher’s head is doing really well! After reviewing the ultrasound from Monday she discovered a small loculated area in his right ventricle. She doesn’t think anything needs to be done at this time. They might perforate the area to let it drain, but nothing has been scheduled yet…

She also mentioned that he doesn’t need a shunt as of yet. 1. because of his size, 2. because, although his condition is leaning towards needing a shunt, it’s not a 100% need…

Asher’s feeds have started fortification. He was bumped up from 22kcal to 24kcal. We’re praying he tolerates this increase!!

9:23am – Phone Call: Dr Update

Dr Lipsky is very happy with Asher’s progress!! Her goal over the next two days is to chip away at his NCIMV (Nasal Cannula Intermittent Mandatory Ventilation) settings while concentrating his feeds simultaneously. She said “a few more jumps in weaning and he’ll be off ventilation and on CPAP only…

Tomorrow, Dr Lipsky will be removing him from continuous feeds and will start him at 2.5hr intervals, dropping the time down by 30 minutes at a time (as he tolerates). The goal is to get him to consume a full feed in 30 minutes…

If he can show himself stable on CPAP alone, we’ll then begin working on nippling…

Eye Exam Results: Dr Schnyder was shocked!

Dr Schnyder expected from last week that the ROP would have advanced. As of the exam this morning, Asher’s eyes have stayed the same without the need of any intervention. The reason: #teamasher has been aggressive with his O2. They dont give him more oxygen when he desats because he typically comes back up on his own. They also have been weaning the amount of O2 he receives the moment his sats hit 95%…

Dr Lipsky said that with the control on O2 he has good chances of regressing. They will keep a close eye on this. He may need glasses, but we’re praying that he does NOT Lose his sight…

To recap, our big goal over the next 4-6 days is getting Asher on CPAP and nippling. It’s all on him! With that, we’ll be able to attempt bottle feeding next week!

Other than that, Dr Lipsky said “Ashers is pretty status quo these days…” 🙂

Praise God for these small but mighty victories!!