Slowly We Row

How Ayla's Doing

The hiss of oxygen blowing through the baby sized face mask on Ayla’s bed caused us to worry when we arrived in her room a couple of nights ago. She’s been doing these “de-sats”, where her oxygen saturation drops, her heart rate drops, alarms start sounding, and nurses come in to see what’s wrong. The mask and bag were laying at the foot of her bed and the oxygen was still turned on, so we assumed it had just been used. It’s so scary thinking about what kind of problem she must have had, or what was going on, or how long she might have needed assistance. The nurses explained that she’d had a de-sat “episode” and that it was a little more serious than most. The nurses used the oxygen mask and bag to assist her breathing, but only for a minute or so. No one is completely sure why these de-sats are happening, and it’s possible that Ayla will start to correct them on her own. Today we noticed that she’s starting to push her tongue forward out of her mouth, and she’s starting to get saliva out. That’s what it looks like to me anyway, and it might just be wishful thinking. We know that she’s still learning how to handle reflux and the secretions in her mouth. And, of course, her airway is a bit different with her small lower jaw and craniofacial differences. For the time being, we simply wait and see.

Ayla had a strange afternoon last week. Her temperature dropped low enough that it wouldn’t even register on the little under-arm thermometer. The doctors weren’t sure if she was sick or had an infection, so they did a bunch of tests and cultures and exams but each one came back negative. The Surgery team thought she might have aspirated a little, so they took her off of bolus feeds for a few days. They put her under some heat, warmed her up, and she was fine again.

Then she pulled her NG tube out, again. Then she had blood in her stomach.

I would say something like “This is the roller coaster we ride here in the NICU.”, but for me, it’s not so much of a roller coaster. It’s a frightening ride down an ever changing river. Sometimes the water is calm and we row, gently, along in the soft blue rocking chair the NICU provides. Other times we’re in the rapids, trying to keep our balance, trying not to be scared, and hoping that nothing happens that we can’t recover from. It’s like that. And hopefully, when we’re home and Ayla is growing up and driving us crazy in all the “normal” ways, we can look back on this with some perspective and see the whole river as a journey.

What's Next for Ayla

Today: Ayla had another Contrast study on her TEF repair. We’ll talk with Surgery in the next day or two to see how things are turning out. So far we’ve heard that they want to keep Ayla off of bolus feeds for quite a bit longer.

Ongoing: NG Tube feeds Physical Therapy Pacifier90X (It’s a really popular workout in the NICU. You probably haven’t heard of it, it’s really exclusive.) :)

Upcoming: Start bolus feeds again. Contrast study on bladder and kidney areas. MRI’s to explore her head and ears. Start taking food from a bottle, and maybe from Mom.

Someday Go home.

Genetic News

We finally received the results of the genetics/chromosome testing. We’ve known, as I’ve written before, that VACTERL has no known hereditary genetic link. But when Ayla was born, and we learned about her craniofacial anomalies, everyone started to wonder if there was more going on. Turns out, all of her chromosomes are normal, nothing out of place, no genetic markers, just VACTERL with Craniofacial Anomalies. This was good news.

Receiving the results from Genetics doesn’t actually change anything for Ayla. She’s still the same little girl and we love her just the same. It’s really great to know, though, that Alaina and I will, God willing, be able to have additional children and that we shouldn't have to worry about potential genetic/chromosome issues.

We Are

As of today, we’ve been in the NICU for 1 month and 5 days. We still don’t know when we’ll get to go home.

This past week, one of our nurses said “Surgery wants to do a follow up in another month”. I, literally, felt my heart fall out of my chest, hit the floor, and slowly cool as it flopped around in front of me. At least another month in the NICU.

I really did have a very empty, cold, feeling wash over me. Alaina and I were thinking that we had a couple, maybe a few, more weeks before we prepared to go home. Now, I think we’ve fully accepted that no one knows when we’ll leave, not yet anyway.

It’s weird being here, in someone else’s house, with a handful of our things, leaving Ayla in the hospital all of the time. It’s super strange going places and seeing parents with newborns, knowing that we too are parents of a newborn, but we don’t have her with us. It’s hard to watch babies come and go from the NICU while we still have so much to work on.

Thank You

Thank you, again, to everyone who is sending us emotional, spiritual, financial, and other types of support. We seriously cannot thank you enough. Please read Thank You if you haven’t already.

Thanks for reading! Corey, Alaina, and Ayla

p.s. - I was just re-reading this post, before posting it, and I noticed that it has a rather somber tone. I’m not going to change it, because I think it’s important to write what I feel when I feel it, and changing it would be sort of dishonest. But, it shouldn’t be that somber. We’re really doing pretty good. Alaina and I are impatient but happy, and will continue to wait by Ayla’s side. Most days Ayla is making some degree of progress, it’s just, you know, slow.

Overall, we couldn’t be happier that we have each other and get to spend this time together. It isn’t perfect, it isn’t what we expected, but we’ll keep trying to navigate this river until we get to make camp, permanently.

Happy Birthday Grandma!