Adventures at Children's

We had our Children's Hospital adventure yesterday.

It was a very long and exhausting day- but adventure it was. We saw radiology, cardiology, the maternal and fetal health center and met what felt like a billion people. 

To be perfectly honest, shit got real. 

There is nothing that can remind you just how fragile life is like seeing young children with cancer roaming the hallways and children in wagons and toy 4-wheelers smiling and waving while attached to IV's and pain medication. Children's hospital is a magical place. Despite all of the scary things that happen there, it is so smiley, and colorful and happy. 

Turns out, we've got some scary things of our own coming up. 

We started the day in radiology with a fetal MRI. MRI's are less than enjoyable, and they needed Nora to be still in order to get the images. How do they do that? Not let mom eat breakfast. For those of you that know me, not eating breakfast is like a death sentence- not for me, but for everyone around me. Hardly a big deal in the scheme of things, but I am a very hungry person upon waking up, so fasting ruins my day. Don't worry though, I got to pick a movie while getting the MRI, Frozen it was. And though it felt like Nora was dancing the whole time, they managed to get her pictures finished before I even got to see Elsa's ice castle, or meet the giant man with a summer blowout! They were speedy, despite Nora's "jumping and jiving." 

Then, Kevin fed me snacks and Panera, and I was happy again. 

Off to cardiology we went, where we had an echocardiogram with the same cardiologist we've met in Fort Collins multiple times. Surprise! Nora was in the right position right away! They saw her aorta perfectly. So, that mostly just quit delaying what she was suspecting all along. It's not looking as perfect as one might hope. And surprise, surprise, my blood pressure is a wee bit high. 

Then, off to the ultrasound. I was most scared of this. They weren't just looking at her lungs or at her heart, things we've known had some issues. They were looking at her whole body. Every nook and cranny. That always scares me. I'm scared they will find more things that are wrong. And I'm afraid more things just can't go wrong. Upon viewing the ultrasound pictures this doctor told us that he honestly can't really see much of anything of concern with her lungs- from ultrasound. But, don't worry, that MRI does a thorough search, so things aren't getting missed. 

All day we looked at all the things I hate knowing. It's all the things that make life hard for Nora. But, just as teachers do, they always included a positive comment or two to keep our spirits up. I can spot it from a mile away, the positive remark to remind us that not all hope is lost. I do it all the time- "Joey is a wonderful boy. He is very social and has made great friends, he is such a hard worker....however, [insert statement that will make mom's face frown]...." The good news is, as a teacher I never start with a lie. I never tell parents something that isn't true- I just don't want them to forget all the great things about their child, because a problem doesn't mean a disaster. I'll assume that's what doctors mean when they make these comments. I heard things like, "Your placenta looks good!" "You're both very healthy." "Oh, look at that image- beautiful!" "Despite these masses in her lungs, the rest of her lung looks quite good for a baby with cysts!" "Structurally, she is sound," "The rest of her abdomen looks great!" and my personal favorite, "You've got a party girl in there!"

Finally, we were set to meet. Not surprisingly, that meeting was delayed. We never moan when this happens, even though waiting is something we seem to do a lot of nowaways. We take it is a blessing. Things get delayed because they are giving families their undivided attention and time. We want that, too. So, if we must wait our turn to have that diligent care, so be it. We sat in the waiting room. I took a much needed nap, then we watched Friends. Perfect. 

In the meeting we had a whole team of specialists: Cardiologist, nurse of sorts (sorry, can't remember her exact title), neonatologist, geneticist, genetic counselor, two pediatric surgeons, a fetal care doctor (also, can't remember his fancy title- he compared himself to the perinatologist we see in Fort Collins, so a fancy doctor), and us. They all had things to say. And, they systematically went through each image of Nora and explained the good, the bad, and the scary. I asked questions in between, and they were patient, helpful, kind, and light-hearted. 

What they found:

-Nora's heart is looking pretty textbook in terms of potential for a coarctation (narrowing) of the aorta after birth. This is something that forms after the PDA valve(I think it is called a valve?) disappears after baby is no longer in utero. The coarctation occurs right at the junction of these two valves and requires surgery to fix. She has evidence coming from the left ventricle, the large space shown between two valves, and the small size of the aorta right now.  Turns out, it's more like 50% of Turner's babies have something like this. In utero, she is more than fine and her heart will keep beating as the aorta isn't really in charge right now, that PDA valve is. I'm learning so much about the anatomy of the fetal and human body I never knew. 

-Nora does indeed have masses on not just one lung- but two. They look enormous to me, but when I questioned them about the concerning size they commented that they are actually very small. The big giant bummer here? Not something that is a "symptom" of Turner's. Too bad babies with abnormalities in general are at higher risk for defects at all. They described this as simply, "Nora showing us her very unique self." Positive spin. Nice. They can't tell what it truly is, the images, though clear as day, don't show us an answer. It is either c-cam(s) which are cysts that need to be removed, and they may be harmful or not. Or something else that ends in emphysema (sorry, it was a long word, we'll get all of this information in writing soon). This is often something that just needs to be watched and if it impacts her respiratory function it would need to be removed as well. Again, in utero, she is ok. The lungs don't breathe air right now, so that can't stop her kicking either. If they were to grow in size, it's possible that it will throw off the structure in her body, and would cut of function to other things. If that happens, trouble. Let's keep high spirits. 

-Nora has edema in her feet. This is swelling. It's common in Turner's. It sometimes goes away, sometimes doesn't. It's cute in a baby with chubby little toes- trying to fit those bad boys into heels one day might not be so fun however- she should take that as a win, really- no heels? Brilliant!

-Nora is a little peanut. She falls in the less than 3%ile for her size overall. That generally is concerning for babies, and they will monitor it closely, but because she has Turner's they know why she is small- we just need to make sure she continues to grow. Her head size is indeed small. Geneticist doctor guy said "I was a bit concerned about her head size, until I saw you (pointing at me). I've been looking at cranium sizes for well over thirty years and can tell your head is also abnormally small. So, that explains that. She takes after her mom." Oh, good? Kevin was thrilled with this statement, he has spent years telling me about my abnormally small head. And I must admit, it was a pretty funny comment. He even had a tape measure in hand ready to measure my head for me in case I didn't believe him. I've had my small head my whole life- I believed him. :)

-Finally, I saved the best for last. Nora's hygroma is shrinking! A week ago at it's largest point it was 11.85mm, yesterday it was 6.6mm. YAY! In fact, they said they can't even call it is cycstic hygroma anymore, it's just a thickening of the neck- something that many girl's with Turner's are born with. VICTORY!

What this means:

All of this new information has the potential to change over time. Things can change rapidly in utero, as seen by her hygroma changes. But, they think that having met the 28 week mark we won't find huge changes in those vital organs. Although, it is said the lung cysts generally increase in size up until week 28, then remain the same or often they get smaller. So let's go ahead and pray for that! Essentially, only time will tell, and meeting Nora herself. They said, "We can't know everything, not until we meet her. She has to answer our questions." So, we wait. But we do prepare for what we think might happen.

We prepare by delivering at Children's, but continuing my prenatal care in Fort Collins. All of my doctors are communicating regularly, and sharing all information. That potential for coarctation gave us a pass to deliver at that wonderfully smiley place, with bright painted walls and cool kid stuff everywhere. Plus, it's super fancy there! Everyone take a big sigh of relief; I wanted this. I feel comfortable with this. 

We will induce labor, and from a cardiology standpoint they want very badly for me to still be able to deliver vaginally. That hygroma tells us she surely can. Thanks for the small head Nora, that should make things easier;). They'll induce around 37 weeks, or plan to for now. If they can push it longer to get her as big as possible, they will. They didn't think that would likely happen, however. 

After she is born things get rolling. She will immediately be started on a hormone of sorts- not a chance could I even begin to spell it correctly. This hormone buys them time, essentially. It stops that PDA valve in the heart from closing so her heart will continue to pump as though in utero. This way, they can slowly monitor the aorta and be certain on whether or not the coarctation exists or not. They'll also need to put a breathing tube in because sometimes babies stop breathing on this hormone. They said at Children's there isn't any need to worry about this as they'll easily monitor it and ensure she is breathing. In fact, Nora will have a whole team monitoring her when she arrives, they'll follow her everywhere, making sure she OK. They'll monitor using an ECHO, as we've used already. If the coarctation exists she will have heart surgery in the first week- usually around day four. This recovery is quick and she will be ok!

Before all of that, in her umbilical entry (that's what they called it- let's say her belly button), will be two cords. These will be inserted immediately. One of them is for monitoring her lungs, the other is for feeding. The hope is that I can hold her for a minute before she is rushed to get all of this- but that isn't a guarantee. That makes me frown a lot. But, I know her breathing is a pretty vital thing to ensure is happening. So, I'll accept it. She will be fed using this tube until they know what is wrong with her lungs. I'll be pumping breast milk ready for her to have once she is ready to eat. We're not really certain when that will be, it will all depend on her lungs. They will do some serial x-rays (every six hours or so) to determine what the lung problem is, and once discovered, if surgery is needed, that comes first then the heart surgery. THEN, she can eat normally. YAY! 

In the mean time, all the tests that usually occur for a baby girl with Turner's will happen. She will spend time in the Neonatal Intensive Care Unit and the Pediatric Intensive Care Unit. Then, she'll come home with us. All of that will likely happen quickly, it all sounds like just a few days recovery for each, and in the end only a week or two total. Then, we'll come back and visit a lot for the first few weeks and months.

Truthfully, it sounds so scary, especially now that I've typed it all out. But, those doctor's seem convinced she is going to be just fine. Despite the heart and lung surgery being, well, heart and lung surgery it's relatively "routine." They said my class of 4th graders seems far more challenging to manage than this. I sure hope they're right! Routine or not, breathing is a delicate thing for a newborn. And I'm not taking it lightly. But I am taking it knowing that she couldn't possibly be in better hands. She has got great doctors who seem to believe in her, and she has parents ready for action. She has all of you here cheering her (and us) on, and I believe God is right there with us- rooting for Ms. Nora. 

So, let's continue to pray for positive outcomes. Nora isn't out of the dark yet- but the future is looking bright to me! 

That being said, we have about 9 weeks until go time. We have: nothing prepared. We painted the nursery in August. We bought one piece of furniture. I think it's time we get this ball rolling! We'll start tonight by going on a date...perhaps this weekend we'll tackle the rest. 

Thanks for the many phone calls, text messages, emails and prayers for us yesterday! They don't go unnoticed! And we feel so blessed! Thank you, thank you!