Day 40 (30/2)

Last Night – 8pm: Bath Time

I was able to capture his bath time last night while mommy had a girls night 🙂

Theres some kangaroo time in the beginning… And then when they rip his bandaid off of his back 🙁

I was also able to snag some rare photos of Asher with no tubes on his face while they were being changed out! (The stuff on his face is a combination of saliva, snot, and residue from the tape they use to secure his feeding tube)…

https://youtu.be/U7LbWyK7zj0

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6:20am – Text Message

“Good morning mom and dad and Aidan! I had a really good night again! I’ve been tolerating my feedings and my belly looks good says nurse Kelly…she even says I have good bowel sounds, I think that’s gross but I’m happy she’s happy 😄

I really liked having guys night with dad and thoroughly enjoyed my bath last night, especially getting my hair washed/head rubbed! You think we can do that every night? 😎
I love my new blankets you brought in for me, now my little house feels more like home 🥰 and all the other babies are jealous!

I had just a couple small poops overnight, I’ll save my big one for later 😜

I didn’t have any bradys, just a couple little desats here and there to keep nurse Kelly on her toes…I still get a kick out watching her jump up to see if I’m okay hehehe

Still no official results from the pictures of my head…I guess my doctor will have to see what’s going on and fill y’all in hopefully today!

Nurse Kelly tried to flush my IV tonight and it stopped working, so she took it out and it feels so good to have my hand/arm back!

To my brother Aiden: just want you to know that I’m really really really excited to meet you! I dream about you all the time and can’t wait to have a big brother to do cool stuff with like building forts and playing hide and seek, which I’m getting kinda good at, my nurse plays peek a boo with me all the time (as you can see in my pictures), so I’m pretty sure I’ll catch on quick!
Even though you can’t come see me, know I love you very much! Maybe mom and dad can bring in a picture of you to have by my bed so I can look at you! 🤩
Be good for mom and dad, I know they’re worried about me, so make sure you’re extra good and do all your homework and chores!

Love you all so much! Can’t wait to see you today mom and dad!
Love always“
Asher 💙

7:30am – Notes From Last Nights Visit

When I walked in last night, Asher had a catheter back in 🙁

Apparently his labs from earlier in the day showed signs of infection so they ordered additional labs STAT and started collected urine for testing cultures…

When we measured the circumference of his head last night, it had grown 1cm (from 23.5 to 24.5) over the course of three days. This rate of growth isn’t ideal and did raise some concern. We’ll find out late today the results of the ultrasound…

His belly does look a little bloated, but we’re not sure if this is “normal feeding” belly or if the fortification is causing the bloat/backup…

We have been looking into alternatives for fortifying his milk. One is a formula option, the other is from human donor milk (probably ideal). The fortification he’s on now is a dairy product. With his little intestines he may not be able to process it as well as just normal breast milk. Unfortunately, the human donor milk isn’t available at this Hospital. Our nurse told us to ask his Dr about ordering it or seeing if we can order it and bring it in…

9:00am – Phone Call: Dr’s Update

The result from yesterday afternoons ultrasound are in…

They either show new bleeding (very unusual) or the way the old blood looks has changed. Dr Lipsky said it’s hard to tell and is waiting on neurosurgeon to review the images…

She did say that it looks as if there’s septation in his ventricle/s (some stringy stuff) but isn’t sure. We’ll be getting a clearer definition of septaion once we get to the hospital today. She did mention “something has definitely changed in his brain and that it could be an abscess as well.”

Waiting…

His labs also came back abnormal and he’s being treated with antibiotics for the infection as of this morning. We gave consent for an LP today to relieve pressure in the brain and test the CSF for cultures…

One of the risks with the DART protocol is that steroids can suppress the immune system for a time. This could be a contributing factor to his infection…

They needed to do an MRI last week for his brain but it is very difficult to regulate baby’s temperature at this stage. If you’ve ever had an MRI, you’d know that room is chilly. The results from the LP will determine whether they do the MRI today or continue to hold off…

I believe the MRI would be helpful, regardless…

It’s a perspective we/they haven’t been able to take into consideration…

Outside of this, Dr Lipsky did say that he “clinically looks well” and he’s not showing physical signs of the above mentioned infection or brain development…

We’re not afraid of this news. May God get the glory for everything that happens. We pray that our Lord continues to preserve our son through this too…

11:31am – Hospital

Catheter has been removed and Asher’s been scheduled for an MRI this afternoon. They’ll do their best to keep him warm with heating pads and heated blankets…

The LP is complete and we’re waiting on the results. Asher’s nurse today told us that the CSF was more on the clear side, which is a small victory…

Ultrasound Images

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The images show Asher’s cerebral ventricles having some sort of “webbing” inside them. His ultrasound from the week prior didn’t look like this at all. The Dr isn’t sure if it’s new blood, old blood moving, or anything else…

Good News: the size of his head is still within normal range. They’re not concerned about any abnormal growth at all…

Also, initial results from LP show that his white blood cel count isn’t nearly as high when he first had meningitis (About 1/4 the count that it was during the last infection)…

First cultures came back negative as well! 🙌🏻

The Focus For Today: diagnosing the “web”, getting rid of the infection, if any…

We’re still in the fight!!