Carly did awesome in surgery and is recovering so well. In surgery Dr. Lee & Dr. Meyers took down her jejunostomy, attached her remaining small intestine to her large intestine, and created a little belly button for her. Dr. Meyers told us her jejunum measures at 31.5 cm and has grown 6 cm since the
necrotizing enterocolitis. Even with the growth, there still isn't much there so she will have
short bowel syndrome (aka: short gut) and will probably need to remain on TPN for 1-8 years depending on how well her intestines do at absorbing the nutrients her body needs to thrive and grow. Only time will tell.
This photo was taken two days after surgery. She looked absolutely miserable and it just broke my heart to see her that way. She was so swollen and didn't even look like herself. She kept yanking on her breathing tube and just hated having that back down her throat. She was still in a lot of pain and had a constant morphine drip to help her feel somewhat comfortable. The hardest part for me was not being able to hold or comfort her, especially when I could tell she was trying to cry but couldn't because of the breathing tube. All I could do was wipe away the tears streaming down her cheeks. It was heartbreaking!
But a few days later, she was doing well enough for me to snuggle with her again. By that point she had been extubated, she was starting to have bowel sounds, and she had even started pooping for the first time ever! I've never been so excited to see poop in my entire life! They had stopped her oral feeds for a week to allow her intestines time to heal, so she had to have an Andersen tube down her throat to suck out her gastric juices during that time. She hated that thing and kept gagging on it and trying to pull it out, but thankfully it didn't have to be in long and her throat is finally free of all tubes. Yay!
A week after the surgery Granny Goose visited and got to hold Carly for the very first time. Carly is her 16th grandchild and 6th granddaughter. She had a nasal cannula again for a couple of days while they weaned her back to breathing room air. She is now breathing room air beautifully and is completely off all meds.
And this is how she looks now! This is the first time she's been unencumbered by all the hospital adornment so it's been fun to finally see what she actually looks like. She currently weighs 6.5 pounds and is allowed to eat up to 25 ml every 3 hours by mouth. They give her 30 minutes to eat as much of the 25 ml as she can and then whatever she doesn't eat, they adjust her TPN to compensate.
Carly absolutely LOVES listening to music. I play her music on my phone every time I visit. One of the songs we always listen to is "Glorious" by David Archuleta because I just love that song and she loves it too. Above are two little clips of how she looks when she hears music. Her eyes get big and she just looks all around and then eventually doses off to sleep.
And this is Carly in her happy place, snuggled up close to mommy. They still haven't set a date for us to bring her home yet, but we are hoping it's within the next few weeks. We sure love this little cutie and feel so blessed to have been chosen to be her parents.
Favorite quote this week:
"The struggle you're in today is developing the strength you need for tomorrow."
Life rules.
