Dec 5 Update

Olivia has been doing well since she’s been home. She stayed in the Children’s Hospital MICU from her respiratory arrest event until Wednesday, 11/22, after her planned triple scope/bronchoscopy.

She was put under anesthesia for the procedure, as her lungs, trachea, and GI system were reviewed. Concerning her lungs, nothing was found that wasn’t expected. For her GI system, she looked great. The vomiting has nothing to do with how her system works. For her trachea, her tube was upsized to help prevent any future blockages. It was observed that her upper airway, above where the trach is inserted, is partially collapsed (about 50%) which could be problematic in the future. If it doesn’t right itself as she grows, she will need an invasive surgery that essentially stints the trachea open by attaching a piece of cartilage from elsewhere in her body. Let’s hope it doesn’t come to that.

Olivia recovered beautifully, and went home on Wednesday. Thankfully, we have had night nursing almost every night since then, so we have been comfortable falling asleep. Family has been extra helpful these days, coming to watch Olivia when we don’t have nursing help.

This baby is now over 11 months old, and weighs 7.64 kg, or 16 lbs 13 oz. We have officially finished the breastmilk supply, and Olivia has transitioned to full formula. Becky is proud to have helped Olivia gain over 14 lbs on milk since birth.

She’s learning to sit on her own, without much support. We are working in physical therapy to help get her comfortable on her belly, but the GJ tubes are definitely causing some pain. 

Realizing that we didn’t update about her G to GJ tube conversion, here’s a quick summary. On Friday 11/10, Olivia had a long day of appointments in Boston, culminating in her GJ tube conversion procedure. The procedure involved a complication in which Olivia’s abdominal stoma needed to be dilated, forcibly enlarging it without general anesthesia. While the procedure was successful, it was much more bloody, painful and traumatic than we were expecting, 

With the GJ conversion complete. Olivia should not be able to vomit her feeds up, which will help her to gain weight and should also improve her breathing. Unfortunately, she is still vomiting up bile about five times a day, but at least it’s easier to clean up than breastmilk…

On 12/1, we had a short 7-hour visit in the ED to observe some increased work of breathing. Olivia has since been placed on the vent for all of her naps, and there is some discussion with pulmonary about having her back on the vent full time until we kick all these illnesses (She’s about to start another round of antibiotics).

Last week during feeding therapy, Olivia tried her first bit of solid food! We put smushed peas on her lips and tongue, and she was very surprised! Not sure she loved it, but we will be trying again today! She is not cleared to eat spoonfuls of anything, as she hasn’t had a swallow study done, but this will let her explore different tastes.

We stayed home for Thanksgiving, and met a few family members which was exciting. Olivia got to see her house decorated for Christmas, and is ready to play merry tunes alongside her daddy!