While Avelyn is by no means out of the woods, she has seen improvements in the last couple days. Her kidneys are still in terrible shape and have yet to improve at all, but her chest tube output is down by half. This is huge. She went from putting a liter a day out of her chest tube to putting half a liter the last couple days. And she seems to be maintaining this lower rate. However things could change at any time so we aren't counting chickens just yet.
Her kidneys are doing a bit worse. She hasn't been producing hardly any urine at all and has been retaining more fluid. The extra fluid has made her trunk more rigid and is collecting in her lungs. Both of which has made ventilating her more difficult. She is on high vent settings again. Due to all the extra fluid and her not urinating, peritoneal dialysis was restarted. So far she is tolerating it alright but it's only pulling enough fluid to keep up with what is going into her. It hasn't been able to pull any extra fluid out of her interstitial spaces yet. Hopefully that will change before long but Avelyn is such a fragile baby. She can't handle big changes or aggressive fluid shifts. Slow and gradual is much better for her sensitive systems. She'll likely be on dialysis for a while longer.
So basically while she has taken a couple steps back with her lungs and kidneys, her chest tube output has improved. With the decreased chest tube output we hope she can start retaining her nutrients and protiens she needs for healing-though she still has a LONG way to go before the output resolves completely. Half a liter of drainage is still a lot for a tiny infant to put out each day.
But we have faith. She can and will get through these challenges. We'll continue to pray from further improvements and do our pee pee dances. We can't give up, she's come too far.
She is teaching us so much about patience and faith. I am not the same person I was four months ago. She has changed me in ways I never thought possible. For those of you who know me, you know I am not an emotional person. Before we leaned of Avelyn's diagnosis I could count the number of times I cried a year on one hand. I never allowed myself to become emotional in front of others. Not because I was afraid of showing weakness or anything of that sort, but rather because I have just always been one to keep my emotions to myself.
Since having Avelyn and embarking upon our journey with her that seems to have gone out the window. I tear up all the time and am completely unapologetic about it. Some days, when Avelyn really isn't doing well or is in a lot of pain, I'm a mess all day. I don't try to hold back my emotions, not that I could anyway. Our lives are too stressful to worry about such frivolity.
It's not uncommon for me to tear up just looking at Avelyn. She shouldn't still be here, it's by the grace of God she is. We've nearly lost her half a dozen times. 10 years ago she likely wouldn't have made it to this point. She's our little miracle baby.
And what's more amazing, she isn't the only little miracle baby here at Vanderbilt. The unit is full of them. We've grown close to the staff on the unit as well as other families. I truly love many of the people we've met on our heart journey. The victories and set backs of our friends' children are keenly felt. We root for one another's babies like we root for our own. The staff not only save our babies' lives but they grow attached while caring for them day in and day out. You can see love in some the staff's eyes as they talk and interact with sweet Avelyn. Some of these people truly love my baby. These people were strangers four months ago but have cared for my child as though she were their own. They have cried with me on the bad days and offered encouragement when we've grown weary. These people have become like family. Our PCICU family. I love this unit and the people we've encountered, though I wish we'd never needed them. I will never take the fact that my baby wouldn't be here without them for granted. I will be forever grateful and will never forget those we've met here-families or staff.