Monday, February 7, 2011

Boston, Vapotherm, PT, Nurses, Photos, and Awareness... OH MY!

Still waiting on final word from Boston. Evidently the surgeon was out most of the week last week, so we hope to hear back something this week.

Annabelle got back off CPAP late last week and is on Vapotherm again. She's been stable, but VERY cranky the last few days. She's also developed a little cough over the last two days that worries me. I know it's normal and a sign that her heart is getting very tired functioning as is. That's why it scares me so much I guess.

Good news: She's doing well with her PT!! We are working, kinda, on sitting up, and every once in a while, while she is REALLY happy and not sleepy (rare!), we can have her sitting up, propped up with only a boppy, and let go... and she'll stay up for a few seconds. I know, maybe not HUGE by others standards, but I'm celebrating this win! We are still working on all the other things like rolling, grabbing toys, following things, and head control.How weird that my daughter will probably sit up before she rolls over?? But not sure anyone could roll over with all those cords, not to mention the gtube sticking out her belly!

Snuggling with Grandma Johnson
(and Kara and Lacy!)
More Good News: After six months, we finally got our first primary nurses!! EEEEE!!! I hadn't asked for such a long time, because I didn't know I COULD, then I was too chicken, and then we were headed upstairs. But now that we are in the ICU until we get a heart, I want Annabelle to have familiar faces, and not that she doesn't get good care anyway, I think when she has the same nurses "usually" working with her, this continuity of care will help as well. So yeah... Rachel (day) and Ashley (night) are my (and Annabelle's) heroes this week! The BEST news is that they both know Jesus too, and while this wasn't mandatory for me, I am so very thankful for it!


Fun News: My sweet cousin came and took some pictures of Miss Annabelle tonight!!! Can't WAIT to share them with you! Should hopefully get them back tonight and will share them with you as soon as I get a chance!


This Week: This week, February 7th - 14th, is set aside as CHD awareness week. In the past, I would have probably completely ignored or been oblivious to it. When you think of "heart" month, most people think of a parent who had a heart attack or someone who suffered with heart disease. Awareness is usually centered around eating heart-healthy foods and getting your blood pressure checked regularly. But this week is a special one in heart month because at the moment, there is no known cause for Congenital Heart Defects. Some of them are hereditary, passed on in our genes, but for babies like Annabelle, we really have no clue why her heart didn't form correctly. And unfortunately, even though one out of every 100 babies are born with a CHD, there is little funding out there for CHD research for both prevention and treatment. I can't tell you how many people have told me, "WOW! We had no idea baby's went through stuff like this!" I used to be one of those people too.

Anyway, my hubby and I are working on putting together a little something in honor of our little heart warriors and in memory of our fallen heart heroes. Hope to have it ready later this week to post on my blog:-) Will also be posting "heart" facts this week and ideas on how you can help the cause as well!

And of course, will keep you updated on my little heart warrior too!

10 comments:

Shannan said...

I've been checking your blog often to get an update. Annabelle looks great in her picture-her color is amazing! My son, Jamie (PA/IVS) pray for Annabelle every night. You are in my thoughts and prayers throughout the day. God is good and He has a plan for you and Annabelle. Thank you for sharing your journey with us.
Love,
Shannan
Proud mommy to Jamie (PA/IVS)

Krista Phillips said...

Forgot to note, for all you heart parents out there... for my project for this week, I need a few pictures of heart warriors/heroes... so if you wouldn't mind me using a few and could e-mail them to me... (krista (at) kristaphillips (dot) com) I'd love to include them!!!

Krista Phillips said...

Shannon, thanks!!! Her color does look particularly good in that picture:-) She alternates between pink and blue!

God IS good, and thank you AND Jamie for your prayers!!!

Keli Gwyn said...

How neat that Annabelle is so close to sitting up on her own. PTL for providing her with "regular" nurses. May their familiar faces brighten her days--and yours. =)

Jessica said...

so great she got day nurses!! and she looks really cute in the picture. have a great week. continuing to pray

ALEISHA said...

PRAYING THAT GOD WILL GIVE YOU STRENGTH AND ENCOURAGEMENT FOR EACH NEW DAY, PRAYING FOR ANNABELLE DAILY. GOD BLESS YOU PROVERBS 3:5,6

Tammi T. said...

Krista,
It was so good to hear an update. We've consistently been praying for Annabelle, as well as you and all involved in her care. Our Daniel was sitting before he rolled over and didn't walk until he was almost 2 yrs old but you couldn't tell it now. We're praying that no matter what delays Annabelle might have that a few year from now, you won't be able to tell the difference.

Tammi T. said...

I tried to email you some pics at your krista@kristaphillips.com address and received a notice of "failure to deliver". I'll try again but the message said it couldn't find a host kristaphillips.com.

Tammi T. said...

Sorry. I found the mistake. I only used one "l" in your last name.

Jenn said...

Thanks for the update. That is great that Annabelle is starting to sit up! Even a few seconds is a big deal for a little girl who has endured so much.
I am so happy to hear about the nurses, too. I think that will make life easier and more routine for all of you.
We are constantly thinking about Annabelle and praying for all of you.