Arghhh... it's been a rough few days but Mila is home...
It started on Wednesday morning when I noticed that 1) Mila was more blue around the mouth (than her normal) and 2) the top of her head was sunken in. The sunken in head scared me... I didn't even know this could happen! I quickly Googled, found out it's called a sunken fontanelle, and laid her on her back. The spot filled up and she fell asleep. When she woke for her next feeding, I had her vertical again to burp her and her soft spot sunk severely. I could literally lay my finger in it.
That was it- I called her pediatrician and left the house. Ironically, we had an appointment with the surgeon for her pre-op that afternoon to set a date for her surgery. I even had her dressed in a tutu to impress him!
When I arrived, we took her out of her carseat and laid her on the table where I noticed that not only was the area around her mouth blue, but her lips were blue. I told the nurse and about 3 other doctors came into the room to check her oxygen levels. Her readings wouldn't go above 65 (and normal adult is around 97 and her norms are in the mid 80's so that drop was significant- for anyone). They called over to the ER and sent me over. Poor Ryan was on a project in Brooklyn so if you can imagine him at the mercy of the subways and trains to get to us.
There's A LOT of details from here but in short... the sunken fontanelle was a sign of dehydration and she was placed on fluids along with meds for her heart. She was admitted to the PICU as her oxygen levels were dipping into the 30s and her heart rate was very high. We got no sleep that night. She was in pain, agitated and overtired and we weren't leaving her side. She cried for about 15 hours and was awake for about 17 when she finally fell sleep at 4am.
By morning we found out she tested positive for.... a common cold! Yes! This is what a common cold will do to a baby with a heart defect and the reason we have limited her visitors and contact with other people. We were sadden by this news as a viral infection and how fast she recovers from it will affect her surgery (date, type of surgery done, recovery, etc). So please know we haven't been hoarding her I promise... it was literally to try and avoid this. Nonetheless, we can't keep every possible germ from her. Goal in the PICU now (and her ticket out) was rest, new meds and continued consistent feedings... and through her sniffles she did just that. This is girl is such a fighter it's crazy.
We spoke with the surgeon last night and we know all the details, options and risks. This is by no means a simple procedure (is any open heart surgery simple?!) but we are confident in the surgeon and the entire cardiology team and believe in them to get her (and us) through this. It's important now she clears this viral infection as quickly as possible.
Mila was released last night. She sounds like a baby dinosaur with her hoarse little roar. :( We're so happy to have her home and have this "bump in the road" behind us. We only wish we had all the monitors and one of the PICU nurses with us! She made quite the impression on the PICU nurses in her tutu and we hope to see them caring for her again post-surgery.
- There will be even more hand washing, antibacterial and lysol in our future. We need to stay as clean and healthy as possible. We of course risk getting her cold and passing it back and forth so anything we can do minimize that will be done.
- She'll be in a "bubble" from other people for the next couple weeks as she can't risk getting another cold.
- Surgery is tentatively scheduled now pending she gets clearance from the pediatrician next week.
- The surgery could go 2 ways: 1) full repair or 2) temporary shunt put in place and full repair completed at 6-8 months. We are obviously hoping for the full repair but will do whatever her body/heart can handle at that time.
- Oh us? We're as good as you can expect! Tired, relieved it's over and ready to get her well... and "repaired". Parental super powers are a real thing (assisted by coffee)!
The lessons here?
1. Trust your gut when something feels off or wrong
2. There are many reasons people limit visitors and contact for a baby... they are not being mean, it can literally affect their health
|Wednesday morning-dressed cute to meet with the surgeon- we threw this outfit in the trash!|
|Poor girl admitted to the PICU|
|Bathed and changed for a fresh start|
|Child Life department brought Mila a pimped-out mobile (and we now have on order!) which she LOVED!|
|Friday afternoon- IV lines removed and resting up to go home!|