What If....?

I feel like pretty much every sentence that I say lately begins with "What if...?" And if I start a sentence with something other than that it's because someone has just asked me a question that begins with "What if?...."

I've spent the last few months before Nora having "What if" questions rolling through my mind. I thought when she was born we might have some answers- and we got some. And that was awesome. And Nora is awesome.

But here we are again, "What if"-ing left and right.

Nora won't eat. She went from eating very close to her goal amounts, to quite literally eating nothing, to eating minimal amounts every now and then. She is pretty dependent on the feeding tube in her nose at this point. She needs to maintain a solid calorie intake in order to heal her incisions and recovery from surgery well, as well as grow- she is quite small. So, many of her feedings find their way to her stomach through the tube. It completely breaks my heart.

As of yesterday Kevin and I were at our wits end trying to somehow convince Nora into eating. We've met with Occupational Therapists, Nurses, Lactation, Doctors- the works. Nora does not want to eat. I've never wanted something as badly as I want this little baby girl to eat. It's the only thing keeping us in the hospital... or so we thought.

We've been keeping notes on Nora's feeds. Watching closely to what works and doesn't work, her reaction to the things we try, how alert and awake she is, if she is swallowing. etc, etc, etc. Then we noted that she really wasn't swallowing much, and she occasionally seemed to cough or choke a bit. We decided that was important to tell the nurses...and BOOM. Suddenly we started getting answers again...which only leads to more questions...

Long story short, Nora Grace has two vocal cords in her throat, as do all of us. But, Nora's left vocal cord has been paralyzed from surgery. We discovered this with a short test this morning involving another tube up her nose and down her throat that watched her vocal cords as she cried.

This isn't uncommon in this particular surgery as that very vocal cord wraps around the aorta and to get through the operation without disturbing this cord appears to be less common than not. Regardless, I'm crushed.

Soooooooo....

I'll bet you're asking a bunch of questions now, aren't you? So are we. Here is what we know.

We have to have further testing....but that has to wait until Thursday. It's called a swallow study. Nora is fed barium (which apparently is quite sweet) and then they take x-rays to see if when she is swallowing her food is going into her lungs. This could explain her lack of vigor with eating. The good news is that the cord is paralyzed closed, meaning at least it isn't wide open and she is just guzzling all of her food into her lungs- at least we hope.

THEN comes the What If's and the options.

IF she is getting formula into her lungs she is likely unsafe to eat. This would mean some time on a feeding tube until we can resolve the issues with swallowing/the vocal cord issues. Our options would be two choices of feeding tubes: the NG or the G tube. The NG tube is the nose one she currently has. The G tube involves a surgical procedure inserting a tube directly into her stomach.

How long you ask? We don't know. We've gotten anywhere from a few weeks to a few months, maybe up to six months? Maybe longer? It all depends. It seems like AT LEAST six weeks.

Which tube would we get? Well, that depends on some things. Our choice. The length of time. Etc.

Why do surgery if she could just keep the one in her nose? Well, the one in her nose is fine and dandy, except poses some risks. You see with both of these tubes we do get to go home, YAY!, but we are in charge of the care and maintenance of these tubes. The NG tube, in her nose, has a string hanging out of her nose and off of her at all times. She could pull it out, we could get it stuck on something, and we have to change it. Changing it could mean we make a mistake, like accidentally insert it into her lungs, causing a very life threatening situation. This, however, could get us home a bit sooner- perhaps in another week or so.

The G tube, surgically inserted into her stomach, sounds kinda rough, and maybe is, but is far safer and more manageable at home...so maybe not a bad route to take? This might mean another two to two and a half more weeks in the hospital before we can go home.

What if she isn't getting food into her lungs? Well, then we are back to square one- how do we get her to eat? Why won't she eat? There are many variables we are looking at besides the vocal cords: she was born pre-term, she is small, she is a "cardiac baby" (very typically struggle with feeding), she has Turner's...all things that might impact her ability to eat with success. And, it'll be our task to figure it out. If this is the case we would likely go home with a feeding tube and keep practicing feeding until she is stronger, bigger, and ready to do it on her own.

Does the vocal cord heal? Sometimes. 35% of the cords heal with no trouble on their own. The rest don't. Meaning, she is shorted one vocal cord for life. Now, that isn't to say she'll never talk, though it sounds like in extreme cases there are some issues with voice and tone, etc. etc. The biggest issue is swallowing. Most kids learn to swallow and eat foods on their own by age one, if they haven't by then, they likely will not- that, I imagine becomes a big, tragic problem.

So, right now we are looking at some more time here at the hospital, and likely a lot more time dealing with all the things before we get to feel like we are just being parents of our new little baby. Or maybe this is being a parent, and every kid has things to figure out? And this is what they mean when they say "you're life is going to change drastically when you have a baby." Although today someone said to me, "The ICU is certainly not an easy place to parent your child."

Oh, good. So it might get a little easier than this? It's not hard right now to be lacking in sleep, or snuggling her, or napping in the rocking chair with her. Diapers are a piece of cake, the crying doesn't really get to me (unless it' because they are sticking something down her throat or poking her with needles), and I adore being her mom. But it's hard to be trapped in a hospital, unable to take uninterrupted naps on the couch or feed her without coaching or an audience. I hate leaving her in the hospital so we can get sleep, and I want to go home to my house with my flannel sheets and that adorable nursery I created. I want to see her face without tubes attached and I want to stop worrying about her heart rate or her voice quality. The hard parts right now all seem connected to the hospital. So, I'd sure like to leave the hospital. :)

A good friend of mine told me before our stay, treat each day like it is day one. Don't get discouraged when you can't home right away, and wake up knowing every day is a new day, not the next day. That advice is proving to be challenging to follow, but vital. We absolutely cannot count the minutes, hours and days spent sitting in the hospital. It is way too tough, instead, we'll start again tomorrow at day one!

I do indeed know that we are in good hands. And Nora is doing well. And this is another hurdle, but she is here, and we are so very grateful! My new favorite past time is my morning nap in the rocking chair with her on my chest, and Kevin sure likes to watch football with her on his chest. We spend a lot of time watching her sleep and hiccup and stretch her legs.

We have an incredible support system near and far and you're all making this stay in the hospital so much better. We are fed and we do get rest and we aren't all alone. THANK YOU so very much. There is no way to express just how grateful we are to all of you- you're making this all possible, and you're helping in so many ways. THANK YOU!.

Now, let's pray that Nora passes that swallow study- or at least comes out of the hospital before we start talking about her age in months, rather than days and weeks?

Here is the latest from Ms. Nora- the sleepiest baby I know: