Day 25

Well, it’s been a doozy and it’s 11:23 am. My work doc crashed, so I spent the morning trying to salvage it. More to do, sadly. Dave came back from morning cares with bad news: Tess isn’t looking peaked in our imagination. Her red blood cell count dropped dramatically in the last 4 days (don’t worry, family! It started before you got here.), and they think she may have a minor infection or that her bone marrow is just hitting bottom and can’t churn new cells out fast enough. They said to think of her like a cancer patient; immuno-surpressed and building everything from the ground up. So she’s getting antibiotics and a blood transfusion today – yet another unknown person we have to thank for Tess’ well-being. I would personally take it as a huge favor if those of you who feel comfortable donating would take the opportunity. It really saves lives, and today it’s saving Tess.

So instead of spending Easter with the fabulous Utah birth family we enjoy so much, we’re spending the day in the hospital so we can be here if Tess reacts badly or, let’s be honest, if we need to see her and make sure she’s okay.

Yet again, I had to prioritize Tess over work. I felt being at rounds today and talking to the nurse was worth missing an hour or so of worktime. I always feel guilty, but when I touched base with the document owner, he told me I made the right choice and we’d be fine a few hours later tomorrow. It’s so great to be reminded that I work for a fantastic company full of rational, sensitive people. That makes me want to work even harder!

2:30pm
Tess has taken a turn for the worse. She had diarrhea pretty badly, so they think it may be viral. Still, 2 antibiotics to be safe. There’s also a ton of air in her intestines, so they’re putting an Anderson tube down to gently suck it out. She does not have a perforation, which would have been a much bigger deal. Sadly, they also needed to reintubate her because too much air was getting pushed through her body with the high flow. It’s only for a day or two, but it sucks. No food, either. So we’re kind of doing a whole body cleanse: new blood, fasting, iv fluids only, no air push – I’d like to pretend it’s a baby spa, but I don’t have the heart to joke yet.

My stomach is tied in knots. I know other people’s children have more severe issues, but man! When they say preemies can go from fine to flattened in hours, that aren’t kidding. 🙁

3:15pm
Well, they think she has sepsis and pneumonia in addition to the potential virus. I’ve been told they caught it super early, and it’s only a 2/5 on the worry scale. I went in and held her little hand for 20 minutes or so, and realized that’s all I can do. As a mom, that’s all I can do – whether she’s 30 weeks old (today) in an isolette, or 12 in a hospital bed someday down the road. I feel like we’re learning some parental lessons early, and I won’t be needing any refreshers, thank you. Thankfully, some great nurses we know are around – although on days like this I want our primaries! Figures she’d get sick on Easter. Allie, a primary who’s here today, just not on Tess, said to remember that a year from now I’ll be yelling at her not to get chocolate on her Easter dress. Oddly comforting!

They are moving her 30-day brain scan to tomorrow on the off chance she has a brain bleed, but they said it’s unlikely. So…we do what NICU parents do best: wait. Her oxygen needs should go down in the next 24 hours, and she should be showing signs of improvement from the blood and antibiotics. Otherwise, we’ll have some fierce worrying to do.

4:10pm
Wow – I don’t think we understood roller coaster until today. Tess has gone from 100% to 40% on her air – major progress! She’s pinking up (yes, apparently that can be a medical term), and is sleeping fairly peacefully. Here’s hoping we get our girl back by tomorrow!

8pm
The burst of better steadied out. She’s down to 28%, which is good. I honestly can’t say more than that, as we’re leaving her covered and sleeping. This morning was really stressful for her, and she can’t take more stimulation. Lexie, the night queen, ran right up and have us a hug. She couldn’t believe one day could turn so brutal! Heartsick, quiet parents are waiting in the parents lounge for any news, and at some point will go home to bed. Tomorrow will be better.

10pm
Well, we couldn’t get to Kat and Spencer, so they came to us! These guys (and Micky!) brought Tess the sweetest Easter basket, which she will sweetly share with us. We had to take a picture; words don’t do it justice. And from us? A giant melted egg! Sadness. We hung out and got updates from Lexie the nurse and nurse practitioner until we realized that no further good would come of sitting at the hospital. Spencer had already taught us our new word (lurpy!) and we’d mocked the melted egg to a fair degree. So we got a little Easter, and Tess is coming back from the scary stuff. All’s well that ends well?

PS: I think it’s clear to all by now how much my world revolves around words. In our Easter basket were 2 letters: one from Kat and Spencer and one from Micky, in which they express much better than I can the inexplicable amazement and gratitude we all seem to share over each other. It goes without saying that Tess binds us, and is the heartbeat of our relationship. In any adoption, there is some share of sadness and loss, mixed in with healthy portions of joy and solace. We are so indebted to the universe for letting us get to know these incredible people, and for experiencing this journey with them. Thank you all. I can only hope that other adoption situations feel as rewarding and awe-inspiring as ours – with our Utah family. 🙂

 

 

 

 

3 thoughts on “Day 25

  1. All thoughts of strength and a swift, strong recovery to Tess! Every time I donate whole blood and dual red in the future, I’ll be thinking of your little fighter (barbarian?) and these sweet pictures of her. We’re just wrapping up our time in DC (sad – it’s been so nice to spend time with Annie), so I’ll be sure to give Stella a snuggle for all of you this evening.

  2. Oooooooooo you guys!!!!!!!! I wish I was there to hug you and take away a least some of these dark times and stress.

    As you know, our parenting experience has been seemingly endless bad news. Another VACTERL parent coined the first few weeks perfectly – The Litany of Bad News. I think this is how medical things go as rarely does just ONE thing go wrong…it dominoes into a myriad of bad and gets picked into pieces by all the sub-specialties. Something to keep in mind is the golden advice given to me by a night nurse taking care of me while I was still in recovery and my little boy was ambulanced off to the NICU – you will be told a LOT of things and only some will end up being true. Sounds trite, but it’s practically been my mantra through the years. What looks like pneumonia or infection or whatever now might look like image artifact or lab mixup in a few hours…or at the next shift change. And don’t put any stock in it unless its it’s coming from the bedside nurse or attending. Radiology techs, residents, etc are not the authority. It took us a long time (and an especially memorable AIDS scare) to learn that lesson well.

    Kat has my very serious admiration for pumping through all of this. It’s unexplainably difficult to pump and especially when your baby isn’t with you and especially when premie. It’s AMAZING she is doing this. For real.

    My best thoughts and wishes and prayers and headed to Tess and her wonderful family…for healing and rest and progress.

    Hugs,
    Becca

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