Tuesday, November 20, 2012

Caring Bridge site for Louisa

I've started a Caring Bridge site for Louisa.  I decided to update there rather than here because it is easier for me to post updates via my phone on that site.  Since she will be in the hospital for several days, being able to post updates with my phone is critical.


There is a "donate" button on the caring bridge page.  Please know that if you donate, it goes to fund caring bridge.  It does NOT go to us.  (There was some confusion about this, which is why I mention it.)

Sunday, November 11, 2012

Two Months

Louisa is two months old!  She has just started social smiling - holy moly is she adorable.  She will look at you intensely and then break into a huge grin.  She's been sticking her tongue out, too.

Weight: I'm guessing around 9 pounds.  She has her well-check on Thursday - I'll edit that in then.

Height: Tall.  Last week in the hospital she was 90th percentile for height.

Size: 0-3 month.  Her NB and "large" preemie clothes fit but since she's connected to things I prefer to put her in clothes that are a little bit baggier.

Favorite things: her pacifiers.  We have three different kinds that we rotate.  Since she is not taking anything by mouth now I have really been pushing the pacifiers.  I want her to be okay with having something in her mouth and not to get hooked on any one type.  This way if we are able to ditch the tube and go back to bottle feeding she'll be able to adapt faster.  (That's my theory, anyway.)  Louisa also LOVES a lap.  It doesn't matter much whose lap she's on just so long as she's snuggled up to someone.

Least favorite things: being put down, being on her back.  Louisa is still battling the GERD monster.  The NJ tube and prevacid have helped minimally.  We are able to put her on her back to change her diaper without being afraid that she will choke.  Otherwise her symptoms are much the same.  At this point someone is holding her 18+ hours a day, usually more like 20 hours.  We have people come over to hold her so that I can get up for an hour or so.  Alice also likes to hold her.   

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.