Friday, June 12, 2009

no more pulmonary hypertension=)

hi babe=) we went to the cardiologist yesterday. at first she was really nervous because she wasn't aware that they stopped your sildenafil at uva and there were a few other things that made her worry that your pulmonary hyptertension was getting worse, but then she went ahead and did the echo to look at your heart and pulmonary vessels. and they finally said what she wanted them to=) you don't have pulmonary hyptertension anymore! i was sitting there in the chair holding you and trying to keep you happy (you were sleepy and crabby, which would also increase your pulmonary pressures) and dr falterman was looking at the screen. she showed me this curve we were looking at and said she liked that. i detected this different smile on her face and i said "i see it but i'm not sure what that means" and she said "did you not see those numbers?" and i didn't so she showed me again...and there were your pulmonary pressures nice and normal. i sat there with this big smile on my face and got tears in my eyes that wouldn't go away for about 15 minutes as we looked at the rest of your heart (which looked good and was functioning perfectly, by the way. your heart just sits different in your chest but that's not a problem) and toward the end of your appointment i apologized to her and said i was trying not to be dramatic but i felt like i was gonna cry and she said "that's ok-i'll cry with you." we like her. so if by any chance you need to be reminded why this is such a big deal...the pulmonary hypertension is why you needed a trach and long-term ventilation in the first place. the blood vessels to your lungs needed time to grow and make your lungs function like they should and you working harder to breathe was making those things worse. so anyway....put very simply, the fact that you don't have pulmonary hypertension anymore should essentially mean you don't need the trach and ventilator anymore! but that probably is a little too simple. they won't just turn the ventilator off and take the trach out overnight. your lungs still aren't quite used to working on their own so they'll slowly wean (but maybe a little faster now?) you off the ventilator and maybe toward the end of the summer take the trach out. i should go ahead and say this is my guess at what they'll do. sometimes i do actually know what i'm talking about and sometimes i have no clue. we'll see=)

you had a big week of doctor's appointments. the main things to say is that your pulmonary hypertension is gone, you got your 9 month vaccines, and we've adjusted your feeds to help you grow and catch up with where you should be. (the events of the last 2 months caused you to slow down on the growth curve...nobody's suprised, but of course we now want you to start growing well again!)

you're way cute. you're doing pretty awesome sitting up. you'll topple over here and there but you're doing so much better. here's a picture.


man you're cute. you are snoozing now and i need to go get stuff in the car. we are taking a very big trip here in an hour or two. it will be super fun for sure=) oh-and you got your fourth tooth this week. congratulations=) now you have your bottom two and top two-and there's this gap between your top two and it's the cutest thing i've ever seen.

love you babe-

mommy

27 comments:

The Madsens said...

Yay! That's such wonderful news!!! We've been thinking about you guys a lot lately. Catherine you look so big and strong sitting up like a big girl...way to go.

Abby & Pete said...

oh catherine!! this is amazing! I am thrilled to tears. you look like such a big girl sitting up! what a beautiful thing it is to know you.

Kristy said...

Fabulous news! She is the cutest thing ever, honey! I want to see her again soon!!! Where are you going to on your trip? Good ol' GA??? :)

Kaye said...

That is absolutely fabulous news! She is just precious. My granddaughter has that toy and it has driven her mom nuts with the song it plays. Have fun! I will pray that the weaning goes well over the next weeks.

drmctrsltsl said...

Awesome, outstanding, wonderful, amazing!, I'm speechless! God is GOOD! Trip??? To Ga??? Can't wait to hear all about it! Love you guys.

brad.kellie.carter.lucy said...

What fantastic news! I got chills just reading it. Catherine is such a lucky little girl to have you as her Mommy. We'll keep her in our prayers that the weaning goes quickly and goes well!

Christopher, Alicia, and Avery said...

That is awesome! We are thilled and so happy for sweet little catherine! We'll be praying for you guys and I know you will katie but keep us posted! Can't wait to hear about your trip! Also, it was great seeing your mom when I was in town.....she is so sweet! Tell her hi for us!

Grannalisa said...

That is amazing!! God is amazing!! Catherine is so adorable and I love those little baby teeth with the little gap. My grandson had the little gap and I loved it!! I am so thrilled for you and your precious family that Catherine is doing so wonderful!!! Will keep you in my prayers.

DevonLeah said...

That is wonderfule news!! I am not sure if I have ever posted, but I have been following your blog for a few mths now and have so enjoyed it. It was very difficult to find a trach/cdh baby.
I remember hearing that my Camden's hypertension had resolved, and it was so overwhelming! What a blessing for you all! We should be weaning off the vent and trach here soon. Looking to be in winter or spring of next year to have trach out. Won't it be such a blessing to one day be done with the vent and trach?! God bless!

Dotty said...

i dont often post anymore, i apologize for that, but i read every update and i must say Catherine always amazes me!! and she is very blessed to have some wonderful parents!!!! she is making huge strides! im so happy for you all!!
blessings and love to you all
Dotty
mom to Zach, cdh 10-26-07

Deb said...

That's WONDERFUL Katie!! I'm so happy for all of you. Catherine is just precious:)

Cynthia Cooley said...

PRAISE THE LORD PRAISE THE LORD PRAISE THE LORD!!! WHAT A BEAUTY SHE IS!!!!
Deuteronomy 32:3
I will proclaim the name of the LORD. Oh, praise the greatness of our God!

ShannaRenee said...

Catherine- I have to agree with your Mama- you are way too cute! I swear, they must be giving you beauty pills in the hospital because you get prettier and prettier in every picture! I'm so glad you're doing better and are out of the hospital......God is so good! Have fun with your busy social calendar - you are going to be such a blessing and treat to every person that gets to meet you! Love you beautiful little girl!

Erin said...

What great news from the doc visit. I am so thankful she is doing well. What a blessing!

twinsplusone said...

i am so HAPPY fot you all! god is working in mighty ways!

susan sagle said...

Hi, I had a baby girl with CDH...she didn't make it. I am so glad for Catherine. What a miracle and a blessing. Could I ask you what her measurements were in utero? My baby's lung to head ratio was 0.5 and her volume was 2.5% of normal. The doctors gave her a 5% chance of survival. What did the doctors tell you, as far as numbers go? Thaks for any info, Susan Caudle, mom to Keira. susansagle@hotmail.com

Sharon - Mom Generations said...

The world is a beautiful place, isn't it!? What wonderful, wonderful news! From the very, very first post I have been seeing and feeling and knowing such wonder in Catherine and such hope in you! I hope you see and feel and know my smile from all the way up here in Rhode Island!

Hot Tub Lizzy said...

When I think where you guys were a year ago (which is about, I think, when I found your story) and where you are now?

There just aren't words.

That little girl must have some AMAZING things to accomplish in this life.

A Southern Wedding Belle said...

Such happy news!! Such a beautiful little girl!! I'm thinking of you all this weekend and wishing that I was there to see you. Blessings and love, Mama Debbie

Rach said...

Oh what BEAUTIFUL news!

Brooke Hammel said...

Katie I am just now seeing this - I am so glad!! :) I wish I could have properly met Donnie and had a chance to say bye yesterday but it was really lovely to meet you and Catherine! What a blessing. She is just the most precious thing. I have very high hopes for her. God is so good!

Capital City Cloggers said...

That is so exciting!!! Heather and I have been following your whole journey. We've cried with you guys and smiled at the good times. I know you guys are so excited .... awesome!

AtlantaMama said...

Praise the Lord!!! God is so good. Maybe she'll get to be off of it by her BIRTHDAY?!! We'll pray for that.
We love yall and you are in our prayers!

ROGERSBIZ said...

NICE BLOG.

Karen said...

Katie, she looks so much like you in these pics now. What a sweet sweet ham she has turned out to be. Prayers and hugs always...

thedunns said...

YEA CATHERINE :) I got tears when I read those words your mama typed about your hypertension being GONE! What a miracle! We love you!

Shelly said...

Praise God!! I love you Casserine =)