Oct 3 Update

(This update took me a little longer than I wanted to post, sorry for the delay! Have a beautiful Olivia pic taken by one of her nurses, Kat, as an apology! -Dan)

Miss Olivia now weighs 6.13 kg, or 13 lbs 8 oz. Her weight gain has been fairly stagnant, so we are working with her nutritionist to add more calories and breastmilk into her daily feeds. Her vomiting is still the main culprit, but we are hoping the changes we are making will help both the vomiting and weight gain. We have added in powdered “baby cereal” to her milk, so she’s technically getting her first “taste” of other food. We have been giving her tiny syringes of breastmilk orally over the last few days, to see if she can handle swallowing. She has done very well; we were able to give her 2.5 mL of breastmilk today and she seemed to enjoy it. Yes, that’s only half a teaspoon of milk, but this is such a big deal for her. She’s making such great strides in other areas, but we are worried about her development with feeding. We hope to be starting feeding therapies with a speech-language pathologist (SLP) soon.

She is now 60 cm long, or 24”. We are very glad she is still growing lengthwise just fine.

This week, we’ve been testing how little supplemental oxygen Olivia needs. First we lowered it to 1/16 L/min, then 1/32 L/min, and finally turned the oxygen tank off. On 9/27, she spent SIX HOURS completely on room air!!!!!!!!!!

We are hoping at the next pulmonary visit, we will be able to eliminate the use of the vent altogether (it is currently used only at night 4 nights a week). We are definitely moving in the right direction when it comes to her lungs.

Because of that, we are going to be more cautious about visitors around Olivia. She must avoid getting sick at all costs, as her lungs continue to improve. If she does well this winter, there is talk of decannulation next year. We ask that visitors test for Covid, and do not come over if you have anything even as innocuous as a sniffly nose. Masks are going to be required at the house soon, and our nurses will be covering up for Olivia’s safety.

On 9/25, Olivia had a follow-up echo to review the PDA closure device that was placed six months ago. It was perfectly normal, and Olivia’s heart pressures are measuring appropriately.

On 9/24, Olivia traveled to Nana and Papa’s house for her first family celebration – Auntie Amanda’s birthday! We were all so excited for her to visit a new place with lots of love.

We have a two week break from doctor’s appointments, and we are looking forward to more play time at home!