This sleeping beauty is now four months old! She's still a tiny little thing but is gradually putting on weight and now weighs 8 lbs. 5 oz. She's been on 24 hour TPN, but we just got the go ahead from her doctor to take her off/disconnect her from her backpack for two hours a day, so they just sent us out new 22 hour pumps (progress, wahoo!). Carly really is progressing amazingly well so far. She is up to 32mL (about 2 tablespoons) of formula by mouth every three hours. She's a good little eater and will usually eat all of it. Our doctor told us we can gradually increase the amount we give her but that at some point she will reach a threshold and it will become more than her little gut can handle. Here's a little diagram so you can get a visual on how little small intestine Carly has.
She has lost all of her ileum and a little bit of her jejunum so she's missing the parts of her intestine where sodium, water, fat-soluble vitamins, and vitamin B12 are absorbed. They draw her labs each week and the only concern so far is that her potassium keeps increasing even though they keep decreasing the potassium in her TPN, so they/we are watching that closely and monitoring her for dehydration. They/we are also keeping a close eye on her bilirubin level because it has slowly been creeping up and high levels are indicative of liver damage (she's on meds to slow the damage the TPN is causing).
With short bowel syndrome, she'll continually be at risk of:
- bacterial overgrowth (bacteria moving into the small intestine from the colon) & malabsorption because she does not have an ileocecal valve
- TPN-associated liver disease (the longer she's on TPN the more at risk she will be)
- intestinal blockage at the connection site due to scar tissue
- central line breaks & infections
- diarrhea and very bad diaper rash due to constant diarrhea (she's always had the diarrhea but just started developing the diaper rash)
- needing an intestinal & liver transplant down the road
I seriously feel like I'm back in college because my brain has been so pumped full of information these last few months. We have learned so much about short bowel syndrome and how to care for Carly but still have so much to learn. I've joined some support groups and they have been so great to go to with my endless array of questions. It's also been so comforting to read other people's stories and to just know that we're not alone in this.
My sis-in-law and nieces sent us this adorable print that I fell in love with the second I opened it because it describes Carly perfectly. I am continually in awe of Carly's strength and her fierceness. Her life so far has been filled with so many surgeries and a ton of pain & discomfort but she doesn't give up and keeps fighting. She still has such a long road ahead of her but if anyone can do it, Carly can. She is a rock star!
As I've mentioned in previous posts we have weekly family movie nights, and five minutes into last weeks movie, I looked over to find Mike and Carly both completely conked out. I had to snap a picture because it was so arorable.
Carly got to visit grandpa & granny's house for the first time last week and loved getting doted on by my cute niece Zyan. Carly has just started to smile and coo and it's been so fun.
This is a very low quality photo, but I have to end with it because she looked so cute in her little bow hat. We love this little girl to pieces. Yes, she has completely flipped our world upside-down but she is truly changing us for the better. She is teaching us patience, selflessness, humility, love, faith, sacrifice, reliance on God, and gratitude. We have been blessed with so many tender mercies through this experience that there is no doubt God's hand is over all of this. We love you little miss Carly!
Favorite quote this week:
"We must approach our Eternal Father with broken hearts and teachable minds. We must be willing to learn and to change. And, oh, how much we gain by committing to live the life our Heavenly Father intends for us."
Life rules!
