Jan 29 Update

(Sorry for posting this one late! -Dan)

It’s been a bit since our last update, but Olivia and the whole family have been doing well.

Olivia now weighs 8.39 kg, or 18lbs 8oz. She’s 67cm long, or 26.3”. She’s had a relatively healthy month, with only one unplanned hospital visit! This weekend, her GJ tube caught on something and was pulled out of her stomach. We are not able to place it ourselves, so Becky put a G tube button back in Olivia’s stomach so she could continue to get meds and a small volume of food. We called Children’s and they scheduled us to come in on Sunday morning first thing and have it placed. Unfortunately, the procedure took far longer than expected. The doctor had to dilate her stomach stoma again, which was very painful for our baby. We had given her Tylenol in advance, and they had applied lidocaine to the area, but it was really rough. Olivia recovered nicely once we were done, and slept the whole car ride home. She had a great afternoon and seemed like her normal self within just a few hours.

Olivia learned how to clap a few weeks ago, and loves clapping when mommy and daddy walk into the room. She also imitates a smacking, or kissing, sound, which is adorable. She continues to love music, and tries to dance whenever some is playing. Olivia still doesn’t like to be on her belly, and does not roll onto her stomach. We are working with physical therapy weekly to improve this, and trying to teach her how to crawl. She prefers to stand with assistance, but we really don’t want her to walk prior to crawling.

Feeding therapy occurs every day with Mom and nurses, and once a week with a professional. It’s been a real struggle, as Olivia has grown to dislike it more and more. She now clenches her mouth shut, so it is very hard to entice her to even taste solid food. We’ve tried several vegetables and baby oatmeal cereal, which she seems the most interested in. Unfortunately, it is very hard to stay motivated but we all know how important this is and keep trying daily. We hope someday she will be willing to taste food.

Ending on a happy note: Olivia hasn’t required oxygen for almost two straight weeks! Her lungs are doing so well, and we are so excited for her!