Nov 4 Update

Miss Olivia is 10 months old! For Halloween, Olivia dressed as Supergirl, and so did Mom! She’s an incredible baby.

Olivia weighs 6.28 kg, or 13 lbs 13 oz. She continues to have trouble gaining weight, so we are working with our nutritionist on this unrelenting lab experiment, continuing to modify variables in the hopes that she will stop vomiting. At present, it is not unusual for Olivia to vomit 5 times a day, which is incredibly disheartening. At today’s appointment, we learned that for Olivia’s adjusted age (7 months), she is in the 2.68%ile for weight and 1.83%ile for length.

After talking to her GI doctor a few weeks ago, we have made the decision to convert her G-tube to a GJ-tube. This means there will be an extension added that allows us to feed directly into Olivia’s upper intestine (the jejunum). She is scheduled for this procedure on November 10th. It should be quick. Unfortunately, we will have to feed her continuously for at least 16 hours a day. We’ve been trying this in the meantime through her G-tube, but it hasn’t minimized the vomiting at all. By feeding directly into her jejunum, Olivia won’t have food in her stomach to vomit up. We are hoping that this will allow her to gain weight.

Olivia has had a few bouts of sickness this last month, and has been put on two different meds, and steroids to try to combat the various respiratory illnesses. She will be starting yet another steroid to help her over the winter, and will be receiving five two-dose injections of the RSV vaccine starting this month.

After over a week of Olivia’s anterior fontanelle being raised, her PCP sent us to Lowell General for a head ultrasound. It came back showing she had a mildly dilated lateral ventricle, and we were sent to the BCH emergency room that afternoon to get an urgent head MRI. BCH wanted to do another head ultrasound first, since it was less invasive than getting anesthesia for a full-scale MRI. The head ultrasound came back without any abnormal findings, but because of the differing results, they wanted to move forward with an MRI. We did a “vent check” MRI, which was five minutes long, and thankfully didn’t involve Olivia receiving any anesthesia. That also came back normal. We got home and to bed around 2:30am, after an exhausting and overwhelming day, but are so grateful that Olivia is ok. We will have another head ultrasound follow-up in 4-6 weeks.

Despite all this, she has been her usual happy, curious self. She’s working on sitting without too much help, and loves playing her various instruments. She still dislikes tummy time, but is very good at rolling onto her back when she’s had enough. Olivia has been practicing standing at her skip-hop activity table, and can be found spinning around in a circle as she plays her piano, spins the wheels, and knocks down trees. We’ve started feeding therapy, and hope it will help her learn to swallow. So far, progress is slow and focused on getting Livie comfortable with things in her mouth.

Here’s hoping month 11 will bring great progress.