Hello All --
I know it's been a while since our last update and we've been somewhat out of communication, a lot has happened over the past 6 or 7 weeks that has kept us pretty busy. Sonja and I have both returned to work part time which has made it somewhat challenging to get back and forth to the hospital and stay on top of all of life's demands. And of course the NICU is an emotional rollercoaster that just doesn't stop. All of which is to say, we haven't forgotten you all and everything you have done for us and are happy to be able to share a fair amount of good news after a lengthy break!
The past several weeks Ava has had quite a bit of slow and steady progress -- the most important areas in terms of her ability to come home are her feeding and breathing.
She's moved through several different ventilators and is now on a small amount of oxygen through simple nasal cannulas. This was a long and somewhat arduous process as Ava was recovering from very serious lung disease. She will most likely need to be on a small amount (about an 1/8th of a liter) of oxygen per day for the first few months that she returns home. We'll also have to be extra careful with her during flu season until she's about 8 years old.
We are working on nippling with Ava, which means practicing breastfeeding as well as bottle feeding. Ava has been getting breastmilk through a feeding tube for most of this time so this transition is somewhat challenging as Ava is now having to work for her food. She is learning to how to suck, breathe and swallow using muscles in her mouth and neck that she's never really used before. This is very tiring for her but she's getting there. As of today she's doing about 60% of her feeds from the bottle or on the breast. Once she's up to 100% for a few days in a row she'll be on her way home!
There's no such thing as a sure thing in the NICU but we're pretty sure that we'll be out of here for good in the next 1-2 weeks! Right now, we are in the middle of preparing the house for the baby to arrive -- cleaning and organizing and re-organizing and getting our heads around all of the things we need for baby to come home to.
For those that have been inquiring, we have FINALLY finished a registry for our little one which you can check out here if you've been wanting to help us prepare for the big day:
We will never, ever be able to say enough about what our community has done for us through this truly difficult time. We quite literally would not have made it through the past few months without you and hope that you know how deeply grateful we are to all of you.
Check out how big this little bug has gotten! More good news soon!