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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Saturday, March 10, 2012

Day 6 and possible surgery timeline

It's looking like Lauren will be in the hospital until her open heart surgery. One of the doctors on her team put it this way: We're having a hard time getting her to gain weight while in the hospital so it isn't reasonable to expect it at home. She is back to her birthweight though which I think is pretty awesome. She gained weight initially but it was fluid weight and she's had (and is still getting) a ton of diuretics by her IV to get rid of the extra fluid. This should help her breathing as well as give everyone a more accurate assessment of her weight.

I totally understand that she needs to be here but honestly, this sucks. I just want my baby at home and have her be well and feeling great.

Her breathing has slowed down to a more "acceptable" range but she still is breathing fast. This is because due to the whole in her heart blood is being shunted over to her lungs. She's breathing very fast to compensate for the extra fluid. She's also using up a ton of calories by breathing so fast and heavy which is why she isn't growing they way we'd like to see.

One of the doctors on her team said surgery could be in as little as 2 weeks. This terrifies me, I was expecting four months, not 6 weeks old. But then later her main cardiologist came in and said her breathing looks a lot better which is a good sign that the medications are working. I'm pretty sure we'll be seeing how things go over the weekend before any type of decision will be made. I am so scared of the possibility of surgery being so soon. I'm not ready. Will I ever be ready? Part of me wants it over with so we can get Lauren home and she can be a normal kid and we can be a normal family. And the other part of me wants to throw up at the thought of my tiny little baby having open heart surgery.

The weekend on-call cardiologist is not my favorite person. He stormed in our room while I was sleeping and said, "I guess I'm supposed to introduce myself. I'm just the weekend guy, I'm old so they don't let me make decisions anymore. But as for surgery, I say the sooner the better."
This was after he listened to her for maybe 5 seconds. Really?! I honestly would've laughed if I wasn't so sad. He was seriously like a character from a movie. I'm glad he's just here on the weekend!! We get our (amazing) regular team back on Monday, which is also Lauren's 1 month birthday!! I think we should have a party for sure.

Please pray for us. Pray for acceptance on my part. Pray for skill and wisdom for her doctors. Pray that Lauren feels as good as possible. Pray for healing.

Her middle name is Hope for a reason!


  1. So sorry you're stuck there, and that you had a not so friendly doctor. My only advice would be to advocate for her as much as you are comfortable with. That way you aren't mulling over stuff in your head wishing you would have said this or that. I have a big mouth but for some reason rarely open it up to medical professionals.

    Children are so resilient, she is going to bounce back from this surgery so quickly this will all be a daze soon. Hugs.

  2. Jackie,
    I know it's hard and difficult right now, but I also know you are one hell of a strong woman. You guys will get through this, one day at a time :) Please let me know if you need anything!