Abby · Down syndrome

Sucking sucks. So does swallowing.

So. Abby’s lungs are all crappy. We were hoping that the swallow study would show that she was aspirating her formula. Which she was. Good news, right?

Mostly. It’s GREAT news in that she doesn’t seem to have a lung disease or disorder.

But not so much that she’s aspirating in the way she is. Abby sucks at sucking. She’s not coordinated all of the time, so sometimes she does fine, and sometimes she sucks fluid into her lungs and up into her nasal passages. That’s why she always sounds so gurgley.

The swallow studies don’t just show if they’re aspirating, they actually work to treat it right then. So they gradually thicken the formula until it’s too thick for Abby to aspirate. The problem is, Abby needs her formula thickened to HONEY consistency. Honey. The problem with that is because it’s so heavy- she’ll fill up fast without getting enough nutrients and really, enough fluid. They’re worried that she’s going to dehydrate. So we have to give her two ounces of nectar consistency formula that’s ice cold. She does not love that. It being cold startles her system, and she swallows better. But after two ounces she fatigues and we have to give her the rest in the honey consistency.

These first two days are scary. If she can’t get enough fluids she’ll have to be put on a feeding tube. They can’t just give her some water with her formula- because she’ll aspirate ANYTHING that isn’t thickened.

After we get through these days we’ll have to see a nutritionist to make sure Abby is getting enough calories and continues to grow. This is also something they’re worried about because she’s not growing as fast as they would like her to anyways. Again, if they can’t get her to steadily gain weight like she should be, she’ll have to be put on a feeding tube.

I saw kids with feeding tubes yesterday. Not something I want to do. Ever.

So if you’re the praying type (and if you’re not, stop being so Godless and pray for my baby), will you please include Abby? We need all of this to work.

11 thoughts on “Sucking sucks. So does swallowing.

  1. Oh Lexi! We are praying for all of you and especially Abby! I am so glad you posted an update. I even looked last night because I was waiting for it. We love you guys. Be strong Abby!!! 🙂

  2. Poor Abby girl! We love your family. You have opened the flood gates, once I tell the kids to pray for her, we will be praying for the next 6 months for Abby in ALL prayers. Blessing the food. Everything! 🙂

  3. my favorite part is the picture of your fridge. with something tipped over in the back. we're soulmates.i'm sorry that this is going to have to be part of your life. thankful for the blessing of abby, but sorry for your heavier load. you know we love you and talk and think about you regularly. in a good way. kiss that baby for me.

  4. You don’t know me, but I stumbled upon your blog through a friend of a friend of a friend of a (insert insane levels of non-connectedness here) … and I’ve been looking at it ever since, pretty much non-stop for the past 24 hours … ignoring my kids, not cooking meals, haven’t showered … ick, I know. Anyway, I just wanted to let you know that I think you are AMAZING … truly, truly amazing. Your posts from when Abby was born … it brought tears to my eyes just knowing that there are people like you and your sweet little family in this world … you’re just so top notch, it’s scary! I fully intend to blog stalk you from now on, which you’ll just have to be okay with. And please know that I completely understand how creepy this will sound, but I honestly feel like I just found a big pot of gold in you. I’m done now. Except that you’re just so freakin’ awesome!!! Okay. I’m really done. The End. p.s. I will be praying for you and that sweet little lady you call Abby … always.

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