This is Jamie Morningstar's experience with her daughter's cleft palate repair at PCMC. They adopted their little girl from Kazakhstan earlier this year. For more of their experiences, you can visit their blog here. Thank you, Jamie, for sharing!
Today will not soon be forgotten in the Morningstar family! It started well and ended well... the middle part wasn't quite so good but hopefully that part will fade from memory quickly.
Sasha's surgery was scheduled for 2:30 pm and she wasn't allowed to eat all day. I thought that would be truly awful, but to be honest it was rather disconcertingly fine. Steve has a theory that since her meals were so regimented at the baby house, she hasn't yet learned to listen to her body when it comes to being hungry and full. I'm not sure if that's true or not, but you would think that a two-year-old would have strong negative opinions about not being fed all day and Sash just took it like a champ. We kept her busy and distracted and she did ask for food a few times, but surprisingly it was never a battle.
We got to Primary Children's Medical Center at 1:15 and went through the intake process just fine. We were told that the doctor was running a little behind (no big surprise there) and had a good time playing in the pre-surgery waiting room. Then we were told that the doctor was running a lot behind and we probably wouldn't get in to surgery until 4. Sigh.
But Sasha was fabulous. She happily blew bubbles, ate bubble solution (she wasn't supposed to eat or drink, but I don't think bubble solution counts), took rides in the little plastic cars, and otherwise occupied herself for the full 2 hour wait! What a kid.
At 4:00 she had a sedative and her craniofacial doc and ENT (Ear Nose Throat doc) chatted with us about the procedures. By that point she was really loopy and was happy to lay down in the wagon and go with the anesthesiologist. It was go time!
Steve and I made ourselves comfortable in the parent's waiting room and just a few minutes later the ENT came out and told us that the ear tubes went in just fine and she has infections in both of her ears (not super-surprising, that's the whole reason she's getting the tubes) but that the normal drops they prescribe after inserting tubes should also take care of the infection. One procedure down, one to go!
The cleft palate repair took another two hours, but it all went just as expected and the plastic surgeon was able to get all of Sasha's mouth parts into their proper place. He remarked again about how wide her cleft was - we just responded that when we Morningstars commit to something, we go all the way!
He was able to get the whole center part of her palate just where it belongs, which is awesome. Right now, it sort of looks like she has a strip of plate down the center of her mouth and she still has gaps on either side, but Dr. Siddiqi said that's normal and those gaps will heal right up in a couple of weeks without additional surgeries.
After meeting with Dr. Siddiqi after he was done with Sasha's surgery, it was time to go get our baby girl from post op. Begin suckiness.
As she was sedated, the swelling in her mouth from the operation started to obstruct her airway, so they gave her meds to wake her up from the anesthesia instead of letting her rouse naturally. Those meds immediately flushed all of the pain meds and sedatives from her system, which meant that she was feeling everything. I walked into post-op past this kid screaming bloody murder thinking, "wow, I'm glad that's not my kid" - you guessed it, that was my kid.
Of course, the choice between a breathing baby in pain and a baby who isn't breathing is an easy one to make! We spent the next two hours with a screaming, hurting, bleeding, restrained, miserable, and angry Sasha trying to calm her down and keep her blood oxygen levels up. It was awful. Really, beyond words, awful.
But we have a great nurse who worked really hard to find the right meds that were safe for Sasha and kept the edge off of her pain and by about 9 pm she had finally calmed down enough to sleep. Her pulse has stopped racing, blood pressure is normal again, her oxygen levels are doing great, and she's finally at peace.
So we're hoping that tomorrow will be a whole new day. She already had a few ounces of apple juice to drink, which is awesome, and we're allowed to feed her mashed potatoes if she wakes up and is hungry. The arm restraints come off tomorrow, which is fantastic because Steve and I were expecting her to have to wear them for weeks. We may be discharged tomorrow or we may need to wait until Friday, we'll just wait and see what tomorrow brings and how quickly she bounces back.
It's so funny - she already sounds different! Even her crying doesn't sound like it used to. Before surgery, I was sort of mourning her cleft. That probably sounds insane, but it's been a big part of the Sasha we know and love and I was sad to see it go. But now that I hear the beginnings of what her little voice is going to sound like (granted, those beginning were mostly screams, making it all slightly less touching) I know that this is right and good.