Monday, April 12, 2010

I Know... there are A LOT of pictures, but there is updates after them all!

FINALLY HOME! Both slept amazing! Harmonee
loving being back in her own bed was snoring,
giggling and talking in her sleep. Layla slept
great knowing that sis was just feet away! They
both slept in the next morning! THANK YOU!

Daddy, trying to get Harm to fall asleep,
another day, another NPO order, another
delay, another UPSET baby!

Not wanting to give his little angel up
after she had finally gotten to sleep!

Layla was showing me how to play with
this fun little toy while waiting for Harmonee
"Look mommy," she would say, "Like this."

Passing more time, it seemed like hours.
Daddy and Layla coloring pictures.
After Harmonee went back to get her PICC,
Layla decided to pretend she was Harmonee
by putting her binki in her mouth and
sitting in her place. Silly.

Our new nightly routine... take a few... add a lot!

Our full nightly routine!

Waiting for Dr. Book to come tell us we can go home!

Talking to London and Liz! Look at those cheeks!

Home at last! Time to sleep!

This was a picture that Liz gave me.
Christ is in the surgery room helping the surgeons.
I loved it!

We didn't get admitted! By the looks of her you wouldn't be surprised that we didn't. She looks good with her tiny tummy, even her yellow skin looks somewhat good today! While walking up to liver clinic a lady commented on how bright her eyes were. Thinking she was meaning the blue AND yellow, I agreed. After a minute or so of looking at her walking and talking she commented, "she has a great tan, its so pretty. Was she born with it?" A little surprised that she would think it was a tan, especially how white I am, I just smiled and nodded.

I also got to see Liz and London. Talking to Liz is always a great help, especially how open she is and how willing to help she is when talking about the ups and downs of waiting for a liver. I could talk to her for hours. I watched London walk around while waiting for the doctors to come see us both, I could only imagine Harmonee doing that in a few months. London looks great, happy and healthy one year old! Everything that I want Harmonee to be in October.

We got Harmonee's PICC fixed on Saturday and since then we have been getting use to doing it ourselves. We need a little practice, but we aren't half bad if I do say so myself. Of course we are a little more... maybe a lot more, paranoid then we were with her NG tube, but with it being a sterile procedure and it being a little more risky if you mess up, it only obvious why.

Harmonee's stool is also so green it is almost black. The nurse told me her son had biliary atresia when he was born as well. We both thought it funny how little things like dark stool color catches our eye. All in all Harm is doing great! Still stable, still waiting for a liver, and still gaining the weight!

1 comment:

  1. Hello, I found the link to your site from Liz's. My daughter who is just a few weeks younger than your Layla also has BA and had a transplant this past November. This is a crazy journey we are on but you are not alone and it does get better. I am praying that your Harmonee gets a nice long stay at home.