Apr 16 General Update

Olivia is doing well since she’s been woken up from her tracheostomy recovery. She is still swollen, especially in her head and neck, but she’s looking pretty good otherwise. 

• Olivia needs her trach ties changed daily, which is something that Max and Becky will need to learn how to do. So far, they’ve observed the team doing it a few times, and are a bit stressed about doing it themselves
• They have been able to start suctioning her trach tube, something they’ve seen done to her breathing tube about 500 times in the last four months. They feel very comfortable doing this.

On 4/14, Olivia’s PICC line was removed! Her team finished converting her Midaz and Morphine to enteral feeds that can be pushed through her NG tube, which is what allowed them to take the PICC line out. This is great news – Olivia can now wear clothes with sleeves! She is also much easier to take out of bed.

Max and Becky have been able to hold Olivia for shorter bursts of time, more frequently, since Olivia can now be picked up so much easier. Since it’s much easier to hold her, Auntie Amanda and Uncle Dan were able to hold her for the first time. Olivia can’t wait to be held by more family soon!

Olivia is still on Morphine for pain, and her Midaz was converted to Ativan for sedation. The plan is to slowly wean each of those meds until she is completely off of them. Ativan is first, and is being reduced at 10% a day. It should take about a month for Olivia to be weaned off both meds completely. She is unfortunately going through some withdrawal, so she may need what are called “rescue doses” every now and then, or a break in the weaning to give her time to adjust.

Weight = 3.41K, or 7lbs 8oz – Wow, she’s six pounds heavier than when she was born!

Olivia has been started on a new drug, Propranolol, to help with her hemangiomas on her side and under her eyelid.

• Speaking of eyes, Olivia’s are still immature but progressing nicely

Olivia and Mom have been able to try “breastfeeding” (for non-nutritive purposes), which is very exciting! So far, it’s mostly been snuggling but that’s ok! Olivia is still very sleepy when held. Mom and Dad agreed to allow Olivia to be on a study drug – Viagra. Yes, you read that right. SiIdenafil (Viagra) is a drug that is approved to treat pulmonary hypertension in babies; the study is to determine if it can also prevent pulmonary hypertension in babies at risk for development (Olivia doesn’t have pulmonary hypertension at this time, but her current state of BPD puts her at risk of development). A positive effect is that it may improve her lung function. So far, there have been no adverse effects lasting longer than four hours.

Thank you

We also wanted to take a moment to thank everyone who has been sending any kind of positive thoughts Olivia’s way. This has been a very difficult time for us, but the support — even purely digital — from our friends and families has meant so much to us. We’re sorry if we’re not able to respond in a timely manner (or at all), but please know that we read every message you send us, and it has really helped on the harder days.