Sunday, December 14, 2014

Smiles and dressings


That's right, folks! We finally saw some smiles this weekend. Mr. Rochester worked some magic and was able to charm a few smiles out of our girl this weekend. I. Loved. It. I had started to wonder if it might be a long while before we saw her smile since she has been through so much in her short life in the NICU. And would she know she has something to smile about? Seeing her smile this weekend lifted my heart.

This weekend, we successfully learned about working her G-button and how to change the dressing on her Broviac. Mr. Rochester changed the Broviac dressing on a doll while I assisted and then we also watched a nurse change the dressing on Little Dorrit's Broviac with Mr. Rochester assisting. It takes two people to change the dressing! I still need to practice more on the doll and then at some point Mr. Rochester and I will both be able to change Little Dorrit's dressing on her. The whole process gives me a bit of anxiety because it is a sterile procedure and if we mess up and dirty up the process somehow, she could get an infection in her bloodstream. Also, I try not to freak out about living so far from a children's hospital if something goes wrong. In time, I'm sure I'll feel better about things, but right now it's hard not to feel worried and anxious about taking care of her after she gets home.

The liver transplant team met on Friday with a bunch of Little Dorrit's doctors to discuss her candidacy for a liver transplant. They concluded that a liver transplant probably is not in her best interest at this time although that does not exclude her from being a candidate in the future. Basically, if hematologists can control her current condition, why swap one disease (homozygous protein C deficiency) for another disease (all the lifelong issues involved in a liver transplant)? Honestly, I'm relieved. I want to do what is best for her, and if that means a liver transplant, then by all means, let's do it. Yet, the thought of getting her through these last few months just to have to put her through a very serious and major operation where she could still die was really scary.

I'm sure there is more I could say but this post is long enough. So, I'll leave you with another cute baby photo:
She is getting a little chunky (which is good). I doubt we will get to take her home before Christmas because there is still much Mr. Rochester and I need to learn and a lot of arrangements still need to be made for her care at home such as doctor and therapy appointments, home healthcare, etc. Even though she will likely not be home before Christmas, when she does come home, it will feel like Christmas all over again.

10 comments:

Amber T said...

THAT SMILE!!!!!!! Totally melts my heart!

Nonnie Light said...

She is absolutely beautiful. What a great smile.

Julie said...

What a sweet little doll baby! I'm so happy for you! I hope things fall into place for you so you can get her home as soon as possible.

N2HIM said...

I have to agree with Amber T. That smile!!!! Beautiful. My heart is filled with joy. Still praying for her to come home soon.

Angie

Mrs. Cinnamon said...

Oh My!!! She is absolutely beautiful! That smile just melts my heart. Did daddy's whiskers tickle her too?? She looks so happy and then so peaceful.

Mary said...

Oh!! She is so beautiful!! That smile melts my heart!! Love you all!!

Liz Jutila said...

She is beautiful! Hoping you can bring her home soon!

Kelly said...

These pictures are so wonderful!! I'm glad you're getting good thorough instruction. It takes a while to feel comfortable with so much but it will come. You're the parents and you can do this! You are doing great. She's adorable and I'm glad she's doing well!

Adriane said...

Love you guys! This post made me so happy and joyful for you! She is beyond precious! Hugs and LOVE!

Blake and Holly said...

Oh my goodness... She is beautiful!!! Look at her smile.. I bet that was the best day!!! She's a fighter and Heavenly Father loves her and is watching out for her and your amazing family!!!