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Thursday, February 28, 2013

Echo number 2

Pin It Yesterday was Ivy's cardiology appointment and second Echo since we have been home from Boston Childrens. We were surprised to find out at her last visit ( 2 weeks ago) that her tricuspid valve had severe regurgitation. (Blood backing up into the heart)
Ivy had a cold and about 4 days after that appointment she developed pneumonia. Our hope was that the new finding was only a result of her oh so tired, newly repaired heart just not having the reserve to be dealing with an illness yet and that once she was feeling well again, the tricuspid valve would return to the condition it was in when we left Boston (mild regurgitation)
I selfishly prayed that I would find joy by emotion, rather than by choice on that next appointment day, finding a valve that was working just fine!! 
And I did!! 
Her tricuspid valve has mild regurgitation now!!!

But there always seems to be a twist of some sort. And yesterdays twist is that Ivy has severe pulmonary hypertension. She was 50's to 60's when we left Boston and she is 90's now! That number gives me hives! I wake up sometimes in the middle of the night sweating, heart just racing, having had a nightmare that I forgot to give her coumadin (blood thinner)! I have never ever forgotten a medication! But for some reason I have these occasional panic dreams about it. 

Well, now I have this constant lump in my throat about this crazy high number. No, it has nothing to do with her INR/blood thinner or any of that. I just threw that in to share ramble.
I feel very uneducated on PAH and need to get my books out and get to work. Once I know every thing possible about one of Ivy's heart issues, my mind is at ease. I'm ok, I can handle it. But if I'm unsure about something, I just can't relax. So that is why it has taken me a day to update on this new hurdle and I have lots and lots of work to do still. She has another Echo in 3 weeks. With great hope that we will be moving down on her curve, not up. And while we don't expect it to just disappear in a few weeks, we pray this is something that will drastically improve as she heals, adjusts to her new heart, and as she continues on Sildenofil and perhaps starts some Pulmonary Hypertension Therapy. In the mean time, we expect that she is feeling lousy, that she will not be able to handle much activity, and that she may need oxygen again, especially at night. 

God continues to equip us, and while this is sure a lot of work and a lot to handle, I rejoice in what we have and stand in awe of this life we continue to see flourish, bless us, bless others and slowly but surely, wherever and whenever God chooses, heal!!

Sorry, no pictures today .....
I will do a wordless post (ok maybe not wordless.... I'm kind of a wordy girl) this weekend.

P.S
We are taking a little road trip with part of our precious clan and heading to Disneyland. We will drive over our Spring Break and spend a few days watching our kids celebrate life!!!! Ivy's cardiologist approved it only due to the fact that we will not be flying, she will be sitting in her stroller or on calm rides most of the time. She is too tiny for any rides that would be bad for her, and just because he knows our family really needs this. Please be praying for us... that this is a safe trip for Ivy and a beautiful time for our family! Lexi is so ~Essited~... therefor Ivy is so ~Essited~ too!!

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22 comments:

jennifer said...

I am sure they are going to love Disneyland! I will be praying that it is a wonderful time of rest (if that's possible at Disney) and family. Praying every detail is resolved with that precious heart!

Sarah Lynn said...

Thank you for sharing the results, and, as always, praying for the best. Good luck with your research. I hope it brings you more confidence. I am "essited" too at the thought of your trip. I hope there will be some pictures from that.

Paige said...

Bless you sweet Mary. I cannot imagine the turmoil your mind goes through daily as you care for this precious girl we all love. We still pray for her every single morning as we drive to school and strangely Madeline and Janie made cards for Ivy Joy yesterday....it was so sweet listening to them play and hearing them decide to make cards for Ivy Joy:). I will send them all for sweet baby girl soon!!!
We will be praying for a safe and wonderful trip for your family,I can't wait to see pics of huge smiles from Lexi, makes me smile thinking of her excitement!!

Paige said...

Bless you sweet Mary. I cannot imagine the turmoil your mind goes through daily as you care for this precious girl we all love. We still pray for her every single morning as we drive to school and strangely Madeline and Janie made cards for Ivy Joy yesterday....it was so sweet listening to them play and hearing them decide to make cards for Ivy Joy:). I will send them all for sweet baby girl soon!!!
We will be praying for a safe and wonderful trip for your family,I can't wait to see pics of huge smiles from Lexi, makes me smile thinking of her excitement!!

Kathy said...

Praying for her numbers to come down and for you all to be able to enjoy your time in Disneyland. Make the memories happen.

Anonymous said...

I am the Nana of two precious Cina Dolls, both age six. They both have special physical needs too. I have kept up with your "journey" and prayed, cried, and praised Lord. You Moms who have taken that huge step of faith and chose to obey God are my heroes. It takes a lot of "daily" faith to keep on keeping on. God has used Ivey and your whole family as a mighty witness and will continue to do so. I will continue to pray for you. Have a great trip.

Prissy

sierrasmom said...

We continue to pray for Ivy and continued healing. I am so excited that you are going to Disney....it will be fabulous!
Love and hugs,
Kathie

deborah said...

Nice...that you are going on a road trip. Hope Ivy does well and you all have a wonderful, stress-free time of it. Take care and keep us posted on Miss Ivy Joy. Thanks so much. :)

my3 kids said...

Oh Mary, we are praying for your sweet girl and we have not stopped. We can't imagine the emotional rollercoaster this has been and remember you are human!!! Have a wonderful vacation and we look forward to seeing and hearing all about it:) xoxo Janice

Big Happy Family said...

Love you Mary, and our Ivy girl. Praying that those numbers go down. I think she will love a little princess adventure in the OC. Just steer clear of the Queen of Hearts, she isn't very nice.

Jboo said...

Praying for your sweet girl! Have fun in Disneyland!

janet

Anonymous said...

Praying for sweet Ivy Joy..It is great that you will be heading to Disney..the girls will just love it there! ~Holly

Carmen said...

Mary,

So sad to hear about the setbacks. Praying for a joyous family time at Disneyland, miracles for Ivy Joy and guardian angels to strengthen you and protect you both.
Much Love,

Betty said...

Awesome for the trip! "Essisted" is the only way to be! Enjoy all of it.

Betty said...

I do believe I spelled "essited" wrong in my post! I guess I was just over "Joyed" by your post and your "essited" little ones...:)

Anonymous said...

Praying as always for little missy and praying all have a wonderful time at "THE HAPPIEST PLACE ON EARTH"!! God Bless, Cathy in illinois!!!

Amy said...

We'll be at Disneyland for spring break, too! Maybe we'll see you there. :)
Amy from Idaho

Amy said...

We'll be in Disneyland for spring break, too! Maybe we'll see you there. :)
Amy in Idaho

Shay Ankerich said...

Bless your time away sweet friend! I am praying you all enjoy your time and sweet Ivy Joy feels well while you are gone! sorry I haven't been around lately... just a lot going on. Think of you all the time!!! XOXO

Lori in Texas said...

What should her pulmonary levels be? Praying for you and your little warrior.

jeanette said...

continuing to pray for Ivy's heart! excited your family will get a MUCH needed "fun" break together. Praying it is a fun, peaceful, and wonderful trip for you all.

Jen said...

My little Emma would like to send Ivy Joy a picture she drew. Would you share your address with us?

sjwaits at aol dot com

Thanks,
Jen

 
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