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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.

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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Thursday, February 21, 2013

The Patience Of A 4 Year Old

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 Lexi Jade has got to be the most patient, good natured little girl I have ever met. There are days where I feel like all I do is tell her to wait for something else. Medicine time consumes me for at least an hour every morning. She asks for juice, I say I'm getting it. 10 minutes later she asks if its ready yet, I say oh no, I forgot, let me get it! 10 minutes later she asks where I put it, oh sweetie let me make it right now as we speak and bam, 30 minutes later, we have juice! The process starts all over again in the evening. She is usually dancing while she waits... or riding her balance bike through the house. Never a sigh or complaint, just happy and joyful! There are days when I feel spread so thin and I know she has once again gotten the short end of the stick and yet every day, she makes me feel like the best mom in the world. 

She is growing up right before my eyes! 

She loves school and dance and riding her bike more than any other activity. She would be fine doing just those 3 things every day! 

 She has the greatest giggle I have ever heard and when you hear it you can't help but giggle too.

 She loves nature, bugs and creepy crawly things don't scare her. She got a Hermit Crab recently, (first pet) and she holds it like its a toy. No worries about it pinching or crawling or anything else... just calm as can be. The crab escaped the cage one night and was lost for 2 days!!! Last night it appeared in the kitchen at around midnight! So glad!!! Can you imagine?? YUCK

 It's been a very long year and there have been more changes and more adjustments than I ever thought her little self could handle. But she has handled it like an absolute star! 

The only thing we continue to work on is her fear of me leaving. She needs to know where I am at all times. If I leave the room and she suddenly doesn't see me, she panics. Crying big and out loud instantly. We are getting close to being over it. The rule is to call out for me in the 4 main areas of the house one at a time. I try to just tell her every move I make so that there is no anxiety but if I should forget, she has been very good lately about following the search rule. I tell her several times a day that I will never ever ever leave her and that if Ivy should have to go back to the hospital for something, that I will be bringing her with me no matter what. She has done amazing but she has clearly had all she can handle.  

God made our little girl for our family! We are so in love with our Lexi Jade. (Auntie Kim and Quincie, I know you are missing her... these pics are for you)

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Wednesday, February 13, 2013

Happy Forever Family Day Ivy Joy

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In early January as I unsuspectedly headed to Boston from Arizona for Ivy's 5th open heart surgery in just 10 months, the dream of celebrating 1 year of family with Ivy Joy seemed just that, a dream. 

I didn't know if she would be with us to celebrate a year of family.
And if she was, I didn't know if we would be back home to celebrate. 
Honestly, I had know idea what her creators plan would be, I was just trusting Him to get us through, one day at a time.
Ivy had suffered so much this first year home, and she had overcome just as much if not more!
She had been so very strong, but had her tiny body had enough? Could she really do this again? It felt obvious to me that God had taken her this far for far more good than I would ever be able to comprehend. And that although it had been a road no one would ever choose, He certainly did equip us and He certainly had blessed us. 
This year has been the toughest and also the most amazing and beautiful year that anyone in our family has ever experienced. And as we celebrate one year of Ivy Joy being in our family, we also celebrate one year of being the family God created us to be all along. Sisters holding each other up, grandma stepping in to help every single time we uttered the words, siblings supporting each other, supporting their parents, overcoming the feelings of fear and choosing the feelings of Hope.
Mom giving up everything to be everything Ivy needed during her fight for life. Dad, fiercely  loving on his family, keeping things running smooth at home every single time we were pulled back to the hospital for another procedure and another surgery. All of us, one big family, strung so tight with Love and Hope and Strength, all because the tiniest one of us was the strongest of all!

And now she has Life!! 

                           She has Hope 

               But she has always had love!!!

She was created for a BIG purpose and God has proven time and time again that his work was just beginning. 

She gives others hope. She teaches us to appreciate every milestone and every obstacle. Every smile and every tear. All our happiness and all our sufferings. 
She teaches us to embrace every day because we never know if it will be our last! 
We are all in this life for a temporary time and it could be any one of our big happy family that could be living their last day. Ivy taught us that it's ok. We have today! And today is a gift! It's not owed to us, it has not been earned, and it is not a promise! It is a gift! We are so grateful for 365 gifts so far! We love this child so very much and we are so grateful that God chose us to be her family!

                           To have a sister to play with
                                                    To laugh with 
                                                   And grow up with

To be in our crazy family of 
9 (counting our son~in~love)

There is no rhyme or reason why or how Ivy could have survived through this year without believing in miracles, in God, in Hope!!

 Nor is there a way to understand how or why God chose this imperfect family to parent this perfectly wonderfully made little heart baby with so many issues going on with her heart and so many more that would follow after that first surgery.

 But one thing we do know.
She is ours! 100% made for each other, made to be our daughter! 
 4 months ago this child had a 20% chance of surviving her 2nd open heart surgery due to the condition of her heart and her pulmonary hypertension. She barely survived a heart cath in October and needed a week to recover from it before they attempted to repair her heart once again.

 But here we are! 4 months later she has survived 4 more open heart surgeries and is thriving like she has never been near death. But we all know she has. Too many times!
Like she has never seen a hospital or an operating room. And boy do I know we have been there way too much! In fact, we have been home from the hospital 12 days and still, every morning she tells me to call and order her food tray! Call, order food mommy. Order oatmeal! 
She loves life. She smiles and laughs all day long and she never stops talking. And if someone else tries to get a word in? Forget it! She wins! Oh my goodness is she bossy! 
She loves her family with all of her core. She watches for every sibling to come home and calls out to her daddy with the biggest voice and the biggest smile when he walks in the door. She is so happy when we are all together and will count everyone (starting with 7... ?) and then name everyone while pointing as if to say, look, everyone is here in one place at the same time! She loves all things girly, loves jewelry and her hair pretties so much that she begs to sleep with them on. She loves to go bye bye and she loves to eat everything! She tried chopsticks for the first time ever tonight and she was a natural. She was determined and she figured it out in just a few tries! 

She does not like rain or wind or being cold. (See, Gods hand in this again! He knew her family needed to live in Arizona!)

 She loves to copy her sister Lexi, all day, every day. She cries in the car as we drive away from Lexi's  school saying, Oh no! Lexi!! Lexi, don't worry, be right back!

She loves her life! Finally! After fighting for that life for a year, she has something so big to celebrate, so big to embrace, so much to look froward to! 

Like growing tall enough to reach the pedals on her bike. And chasing butterflies, and traveling to places with sand and ocean!

Ivy Joy, happy one year forever family day! We love you so much baby girl and we can not wait to see the sparkle in your eyes continue as you experience even more firsts this next year. 
Mommy, Daddy, The Bigs and Lexi

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28 Days of Hearts

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February 13th Ivy is featured on 28 days of hearts. 
Stop by and say hello! Pin It

Monday, February 11, 2013

Valentines Day A Little Early

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With School parties and Chinese New Year and Valentines Day and Ivy's forever Family Day and Daddy Daughter Tea and so on.... I thought I'd better get in an early Valentines Day post! Good thing I did because Ivy caught one of the icky bugs out there and has been sick the last 2 days. We are so thankful for helpful sisters and brother and cold weather to make the hibernation a little cozier!

              The cookie says Kiss Me? Ok, then I will!

Ivy Left Lexi when it was time for the cookie... neither one of them are fans of frosting. I am sure loving having this darling little duo all happy and together!! Sweet sweet days! Pin It
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