Tuesday, April 5, 2016

Adios Tubie!

Goodbye NG tube!!

As of this morning, Helena is officially gaining weight even without the night time NG feedings! We've gotten the all clear from her cardiac nurse, her pediatrician and her nutritionist to cut it out completely! It's amazing to think that in less than two months she's gone from completely NG tube dependent to totally off it. It's been a long, stressful two months full of scales and weight checks and food logs, but we've done it!

She's so happy without that damn tubie!

I can't even express how happy and excited I am about this. It was my long term, super reach, thought it was unattainable dream goal to have her eating orally 100% by surgery and we've done it! I honestly didn't think it would happen, but with the care and dedication of our team we did it and we're just all so happy!

Celebratory mohawk. As you do.

Everyone tells me that if a baby goes into surgery eating orally, they go home eating orally; but because I'm weirdly superstitious about these things I'm not packing up her NG supplies (which of course, I just reordered before we started the no NG at night experiment) until we're home and doing well. I don't want to jinx our progress, but I'm optimistic that we won't be needing any of it anymore.

Since coming off the NG tube Helena is a completely different baby - she's rolling all over, sitting up better, babbling more and more each day and is just so much happier. She's curious and wants to explore her environment and is getting frustrated that she's limited by her low muscle tone and inability to crawl and sit up on her own.

She still manages though. 
"What is this thing on my counter?"

"A cord! A cord!"
Why do babies all have a fascination with cords? Or is that just ours because my Husband is a giant electronics nerd/hoarder?

It's hard to believe by looking at her that she's going in for major open heart surgery in less than a week. She looks great and if you didn't know better you probably wouldn't guess there was anything wrong with her. Her oxygen levels have been in the mid 80's, which is right where they should be for her. While she needs the corrective surgery, she doesn't need it right now. We're choosing to do it now because she's doing so well.

Monitoring her O2 levels has become a bit more challenging...

For me, this is both good and bad. It's good because she's strong and healthy and bigger and in a good place right now to undergo such a serious operation and hopefully bounce back quickly. Because she's doing so well we're all hoping it will lead to an easier recovery.

It's bad because she's doing so well! Of course after surgery she'll be on restricted activity (as much as you can restrict a 9 month old) and we do expect some regression which sucks because she is doing so well right now, and developing new skills every day. That most likely won't be the case for a few weeks post-op, which is totally normal of course, just unfortunate.

So until Monday (Surgery Day), we're trying to pack on the pounds, and just enjoy our "normal" as much as possible. 

Yes, I'm kinda freaking out and emotional about the whole thing, but no, I do not want to talk about it. I appreciate all the offers and support, but I prefer to live in denial until it's actually happening, thank you very much. 

It's funny how differently we handle things - I think this week is so much worse because my imagination runs wild with all the horrible things that can happen and I don't like waiting or the unknown and I'm a nervous anxious mess. My Husband thinks next week will be much harder when we're in the hospital dealing with whatever might happen, but for me, that's easier. I can deal with what's happening, wondering what will happen is so much worse for me. 

What's also funny is that My Husband wants to know everything and I want to know nothing. We met with her surgeon again, and he went through the surgery in detail. This brought My Husband comfort. It totally freaked me out. But on the plus side, this was the first time I've met with our surgeon and not burst into tears like an emotional lunatic so that was positive. I managed to hold it in until we were in the elevator this time. I swear, there is something about that man that both brings me comfort that he'll take good care of her and yet makes me sob uncontrollably. He probably thinks I'm nuts.

We have Pre-Op on Thursday where she'll go through a physical, blood draws, EKG's, echo's and probably more. She's going to hate it, but it's necessary. Then Monday is our big day. 

I'm not a hugely religious person, but as the saying goes, "There are no atheists in a foxhole" and well, we're in a pretty big fucking foxhole right now. I'm reaching out to any and all options that might play a role in helping our little girl through this. On Monday, any thoughts, prayers, positive vibes that you want to send our way would be greatly appreciated.

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