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Sonja and Daniel's Baby Girl Ava

A place for family and friends to keep up with the progress of baby girl Ava and the Castañed-Norman Family.

Latest journal entry

The breathing tube is out and she's in our arms!

Howdy Folks -- 

It's been a good little while since our last update as we've been taking time to get a sense of what our new and ever changing routine looks like with hospital visits, getting back to work, pumping breastmilk and trying to get some much needed rest. 

But the nice thing about a long wait for an update is that I have a boatload of good news to share with you:

The first big thing is that Ava's lungs have developed enough that about a week ago we were able to remove her breathing tube. She's not off of oxygen completely but she is now able to get it through her nose rather than directly into her lungs. With a tube down her trachea Ava's head was only allowed to be in one of three positions. Now she has a full range of motion. She was also on very powerful pain medication to help her with the extreme discomfort of the tube which they've now been able to ween her off of completely. She can make noise - she sounds like a baby kitten! The tube and all of the associated accoutrements made it so that we couldn't really see her whole face until now. She is obviously so much more comfortable being tube free. Most importantly, we are finally able to hold her which has meant so much for all of us.

The second piece of good news is regarding Ava's brain. You may remember that Ava had some pretty significant bleeding in the brain in utero and had developed a cyst or hole in her brain as a result of complications from TTTS. Up until now her bleeding hasn't gotten any worse but it has been a serious concern and so the doctor's have been monitoring her closely. For us it seemed the best case scenario was that the damage did not get any worse and would heal slowly over time. Ava's most recent brain scan results came back 'unremarkable.' This means that there is no sign that she ever had any bleeding, there is no sign of the cyst in her brain. This is a miracle.

Finally, Ava is gaining weight at a steady pace (she's 3.3 pounds!) and is up to about a half an ounce of breastmilk per feeding. Those numbers sound small but are in fact huge all things considered.

I give all the credit for this steady, significant recovery to our community around the world who have sent so many kind words, thoughts, prayers, positivity, donations and on and on. We would not be in the place without you and we are so grateful to all of you. Keep it coming, it's working!

If you are thinking at all about specific ways you can help you can donate to our GoFundMe here. Or donate directly with the donation tab on your upper right. We've been blown away at how much people have given and the money really has taken some of the pressure off of returning to work, getting things we need to prepare for Ava's eventual return home and a significant reset as we think deeply about our family's needs now and into the future.

We love you all. 





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