Update on Cassia: So baby was doing pretty good when she moved down to the main floor. She moved last Tuesday night. Jackson and I were playing with her. Taking her baths and holding her whenever we wanted. We where her caregivers and parents but also with the support of the hospital. It was the beginning of the transition to start the process of going home. It was awesome.
We had the doctor working with us to give baby Cassia bolus feeds and get her to a place were we can go home. There where people who were talking to us about going home and how we should sign up for the CPR classes and that we should b going home by the end of this week beginning of next week. Yeahhhhhhhh!!!!! We were over the moon with happiness.
That’s why we didn’t update. It was gonna be a surprise to everyone and we were gonna do a live video update.
Then slowly baby was showing signs and symptoms that were concerning.
That when it all started on Saturday when baby was fussy all day long and that went up until Sunday 5 o'clock pm. She didn't go to bed until 1am or 2 o'clock Saturday night/Sunday morning because she was so irritable. We thought maybe she has a little bit of gas because she has been so fussy and maybe she was in pain because she has had a really bad diaper rash that's a yeast infection again to the point where it's bleeding so maybe she's uncomfortable and need some pain medicine so we gave her some Mylicon drops for gas and Tylenol for discomfort and it seemed to settle her and she was pretty much asleep after 5 o'clock on Sunday all the way up until Tuesday around eight maybe 9 o'clock at night.
We knew something wasn't right, why is baby sleeping for over two days. Was she just catching up on sleep or was she getting sick.
We were also noticing that she has had really high blood pressure in the triple digits and she's been gagging a lot more because she's been choking on her phlegm and when she threw up on Sunday it was a big wad of phlegm to the point where I had to curl it with my finger and pull it out of her mouth it was so thick and sticky.
She was fighting a little bit of a fever and was sneezing a lot more and had more of a wet cough.
We talked to the doctor and there was cause for concern so they checked her for any viruses but it came back negative but she was still breathing really really hard with really high blood pressure, breaking out into a fever and they had to go up on her oxygen support so she is now on high flow instead of low flow so her surgeon Dr. Petrosian felt it would be best to send her back up to PICU where she can be monitored more because she's fighting something and it's taking a really big toll on her. This is why we have always said that is essential for everyone who sees her for them not to be sick not even with A stuffy nose or even a simple cold because to her she handles it like it's the worst sickness you can possibly get and it sends her to the ICU. evening gowns
We don't know what she got and how she got it but it's bad everywhere and from now on everyone has to wear a gown and a mask when they come into her room because we're taking the necessary precautions because she's to prone and high risk of getting sick.
Right now we're just trying to find out what's going on , we're trying to settle her and hopefully get cultures back within 72 hours and they're not sure but depending how all of this goes they might end up even keeping her until her second surgery so the possibility of going home might be on the back burner for now but that is something that they would still like to try but first we really need to find out what's going on.
They had also stopped her feeds thinking that she's working too hard to digest so they wanted to give her body a break and it actually had the opposite effect she just got so pissed off that they couldn't settle her that they had to give her her food back but again she now has to have an NJ instead of an NG tube so it's not going to her stomach anymore it's going straight to her small intestines. We're not sure if they're going to do bolus feeding or if they're going to feed her hourly again so there's just a lot that's going on and this was a major set back. We just hope that she gets through this and we find out what we're dealing with.
We will try keep in better touch. We love you guys. And thank you for all of your constant prayers. We just want her to get better.
The pictures will be from last week to now in order. In the beginning she felt better then slowly got sick. And got a fever.