Echo number 2

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!!