Update on our Cali. She is 19.5 weeks, 11 lbs, and 40 days post transplant. Last week she was making good progress with weaning the Clonidine patch with showing little to no signs of withdrawals and working with occupational therapist. ENT was supposed to come by on Friday to check out her vocal cords but due to her sleeping a lot, they decided to reschedule to the following week. Everything was going smoothly until the weekend approached us.

Saturday morning, while getting a routine x-ray, they saw suspicious bubbly lucencies and raised concern for possible NEC forming. (What she got in the middle of March) They paused her feeds and contacted surgery to come take a look. After observing Cali and xray, they decided it was low concern for NEC but started her on antibiotics to be on the safe side, as well as have her NPO (no food) for a few days. This resulted in a snowball effect. Cali is on a good amount of medicine and with her not having any food in her system and taking constant medicine by mouth, it made her have a very upset stomach (hours of throwing up every 15-20 minutes) as well as having extreme withdrawals (throwing up, constant body shakes, high heart rate, fast breathing, diarrhea, etc …..). This has lasted for days now and has been super rough on Cali and its been hard watching her in that state.

After 4 days, they came to a conclusion she did not have NEC and to restart her feeds and stop antibiotics! 🙌🏼. She is still throwing up and shaking but it’s much less. So Cali had a small set back but we are working to get back on the right track. Even with throwing up and having withdrawals, she continued to have a smile on her face and show how much of a fighter she is. She’s a very happy baby.

We still don’t have a date on when she can come home. Everyone was hoping just a few weeks once going to the step down unit but we are realizing this drug wean is much harder than anyone anticipated.

Thank you all for the love, prayers, and support — it truly means everything to us. Please keep cheering her on as she continues to heal. #teamcali #heartwarrior