Monday, November 5, 2012

Well, it's been a week.  I'm going to write this in list form because I have a limited amount of baby-free time.

- Louisa was admitted to the hospital on Tuesday for GERD directly from her appointment with the gastroenterologist.  Yup, hospitalized for reflux.  This is the King Kong of reflux, though.  On the bell curve, she is faaaaaar to the right in severity, as you will see. 

- Louisa had an NJ tube placed on Halloween.  This is to preserve her lungs (because she was aspirating) and to give the doctors a good chance at finding a medicine that will help her.

- Tube will be in for 4-6 weeks and then we'll see.  Options are as follows: 1. she gets the tube out and resumes bottle feeding.  2. She keeps the NJ for a little bit longer.  3. She needs surgery and gets a more permanent tube placed in her stomach.  3-1/2. We put the surgery off but she gets the more permanent tube placed in her stomach.

- She is now on Elecare.  It will cost $120 a WEEK.  Pray that insurance covers it.

- Louisa is on a heart / lung monitor 21 hours a day (we take 3 hours off in the morning.).  She is seeing a pulmonologist who we LOVE.

- She is still quite a little snuggle bug.  I don't think you could find a sweeter baby.

- We are doing okay.  We have had lots of help from our church and from our friends and that has made an enormous difference.

Here are some pictures.

My beautiful girls.

"I'm home and I'm beautiful!"

Sitting in the bouncy for the first time without screaming.  Hip hip hooray!!!

Home health gave us the pump and everything that goes along with it....  except for a backpack.  They were out of backpacks.  My options were to be tied to home until the backpacks came in or to make my own.  I made my own.  (We've got places to go and people to see!)  This is the Toddler Backpack pattern by Made By Rae.  It was fast and easy.

I modified it a little bit to work with a feeding pump:
Bound buttonholes for the tubing to come out and a loop of webbing with a snap to hold coiled up extra tubing.

I changed the loop at the top so that I can snap it to the stroller handle.

A loop of webbing that snaps on the inside to hold the bag of formula.

We took it for a spin yesterday and it worked well and was stylish to boot.  If you've got to be hooked up to crazy hardware, best to do it in style.  When I take L to the pulmonologist on Wednesday I'll try to get a picture of her setup in the stroller.


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