Day 52 (32)

7:01am – Text Message

“Mom and Dad, guess what?!?! I was the goodest boy in the whole unit…well says nurse Kelly, I think she’s a little biased though! But I really was a very good boy all night! I had no bradys all night long! I only had some desats but that was mainly with my cares and I fixed myself before Nurse Kelly had to! 😜

Despite getting some fortified milk my belly still looks pretty good and is 23cm 🙌🏻

Nurse Kelly said she was really happy with how my head feels, I think it’s super weird that everyone keeps touching and rubbing my head…is it for good luck or something?? 

My gas was alright this morning, CO2 is 63 right now, so they didn’t change my vent settings anymore this morning and will have another gas around 2pm. Nurse Kelly got my O2 down to 36% this morning though and I’m feeling great! 

You’re not going to believe what these people did to me this morning! First Nurse Kelly said we had to have a pep talk, she said I quote: “Asher, there’s one rule with what’s about to happen…don’t go to any bright white light no matter how mad you get” and I said uhhhhh I have no idea what you’re talking about but I guess I’ll agree to it.

Then they put all these wet drops in my eyes and then pried them open with this cold metal gadget and took all these pictures of my eyes. they said they look cloudy but that that’s normal bc I’m just a tiny guy….and I did just what my nurse said I ignored all white lights and handled that like the tiny champ I am!

Nurse Kelly helped me making sure this was done before she left that way she could hold my hands just the way I like the whole time and never let go, then she picked me up after and gave me real good snuggles for a few minutes…now I’m tucked in and napping…what a morning! 

Can’t wait to see you mom and dad and get all the snuggles and skin to skin today!

Love you lots and lots”

Always xoxo

Asher 💙

12:00pm – Hospital: Dr Update

Asher has been doing pretty well this morning considering the medieval contraption used for his eye exam 🙁

Dr Lipsky said that his eyes were a bit cloudy, but, as mentioned in Asher’s message above, it’s very common because of his size and age. Nothing showed up initially for them to be concerned…

The images they took will be sent down to specialists in Southern California for review…

Last night, due to a complete misunderstanding on the hospitals part, they began fortifying his milk again without us knowing. When Kelly got the order she called us immediately because she knew we wanted to hold off. We then called and spoke with the night Dr and expressed our wishes to continue to hold off on fortification right now…

He’s currently tolerating 5mL/hr very well and we’d like to get him to tolerating full feed volume (8mL/hr) before beginning fortification…

We lost some of the milk because they fortified a larger batch for his feeds and now won’t be able to use it in time 😭

Cortisol Testing

When we walked in they had starting testing him for an adrenal gland response. They give him cortisol (stress hormone) to see how his body responds. They draw a baseline of blood before the cortisol is given, then a draw 30min after receiving the cortisol, then a final draw 30 min after that (3 heel pricks in one hour 🥴)

This is a standard procedure that occurs two weeks after the DART protocol (steroids) is complete…

The steroids carry the risk of causing the adrenal glands to become suppressed. The test today will tell us if he’s fine or if they’ll need to provide support to get his glands back up and running…

We praise God for another day we get to spend with Asher and the impact his little life is having on our family and everyone else following his story…

To God be the glory…