Ivy's Forever Family Day and an update on her precious heart

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                                       5 YEARS HOME!

We came home from California on Friday. Her Cath went well but there was no intervention done. To cut right to the chase, she needs another Open Heart surgery. Her Mitral Valve and her Pulmonary valve need to be replaced. And while they are in there they will replace the batteries in her pacemaker. 
While we are sad our sweet girl needs to go through this again, we are so very thankful that there IS something more they can do! This is the answer to healing her lungs! The reason her Pulmonary Hypertension has not responded to the many forms of medication we have been trying. It's why her legs hurt when she walks. (lack of blood flow) It's why she can't ride a bike or run along side her sister or wrestle with her daddy without getting completely out of breath. And I really hope it is the answer to getting her to eat again because this mama is exhausted by the amount of time I spend trying to get this little one to eat anything... drink anything other than ice water. She just gags and wretches. The little girl who used to always have a box of fries or a bag of chips in hand.. no more. To be able to play hard, laugh hard and eat a regular meal.... to do these things with ease... Ivy says it will be far worth it! She is the bravest and strongest girl I know!

Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.

Isaiah 43:1b-2 (NIV)

Today we celebrate the day we met! The day we had our first cuddles! The day we became a family! She needed us and we needed her and nothing has changed! We love her and she loves us!

Tomorrow we celebrate valentines day and the day we signed that paper that made it all official. She loves that we get 2 days to celebrate! I was thinking today about our first few days together and trying to remember every detail. The obvious things are hard to forget, how blue she was, how clubbed her tiny fingers were. How it felt like someone was beating on my chest when her heart was pressed against mine. 

But I wanted to spend the day remembering the other things. Like how quickly she bonded with me, but yet how she gave everyone else the stink eye. How she would give the sweetest most delicate kisses. How much she loved to go for walks outside. How she would eat just about anything! (those were the days.....) How she laughed with no sound, but how adorable it was even without sound. How she thought it was so funny to throw herself backwards from sitting position so she could laugh at my panic as I scrambled to break the fall. She knew I would catch her! How she would shake her head no when she tried to crawl and when she pulled up to standing position. She did this because in the orphanage she was not allowed to do anything to exert herself.  She was so proud of herself. I knew from that first day that she was incredibly strong. To hear her breathe was like listening to a staticky radio station. And yet she just smiled and went about her business. She was crazy about her first bath and she still loves baths more than anything. She'd never get out if there was no time limit. Take that girl to LUSH and she will attempt to buy every bath bomb and bubble bar she can afford! She has always had a zest about her. A sweet and gentle spirit with a side of hot sauce! 

Oh how we love her!

Worlds best sister always by her side! Always encouraging, always understanding! 

These 2 are so good for each other!!!

We are waiting to hear back from Ivy's cardiologist about when this surgery will happen. In California they mentioned early June but we really don't know anything for sure yet.

One day at a time! 

Lord bless me with peace and freedom from fear. I will hold your hand and trust your heart with all that is within me. Give me courage today to be the person you created me to be. Amen

 Mary

Let’s ask God to show us what we are afraid of. What is paralyzing our faith and keeping us from living confidently in His peace and freedom? And then let’s give God a chance to come though for us as we courageously walk through our fears, holding God’s hand and trusting His heart to lead, protect and preserve us each step of the way.
Dear God, help me walk through my fears by facing them instead of being paralyzed by them. I want to take Your hand and trust Your heart with all that is within me. Give me courage today to take the first step. In Jesus’ Name, Amen.
- See more at: http://proverbs31.org/devotions/devo/when-fear-paralyzes-your-faith-2/#sthash.RwaHfzi0.dpuf

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Hope

Pin It                                      HOPE
                     Is not wishing you could
                        It is knowing HE can!

This morning we all woke up as a family in our little hotel in Palo Alto. Ivy included! She has regained her appetite and was munching on eggs and noodles before 8am while her sister slept. Lexi was so excited when Ivy was unhooked from everything yesterday and they said we could leave. Her smile could have lit the room up! Tomorrow, we start the drive home. But today?

 Today is about miracles! Family! Treasure! Hope! Pin It

Waiting on results

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We got to get the little Empress out in the wagon today. She had been asking all morning!

We have been given the thumbs up with neurology so now it is just up to her heart doctors to say when we can go. We have 2 more IV's gone as of today. So down to just the one in her right hand. She had lots of awake time today! She is very on edge, Ivy is usually the star patient. most cooperative little patient you can ever imagine! Well today she pitched a hissy fit like we have NEVER seen. She was pounding her tiny fist and shouting at the top of her munchkin lungs, "I NOT GONNA LAY DOWN FOR MY ECHO! I DONT WANT ECHO! I NOT! I NOT DO IT MOMMY!!!!!!" She hates tape. She has had her skin pulled way too many times and she is terrified of getting tape taken off. Well, she had an IV on her groin and another in her foot and that was a lot of tape to come off. She'd had enough and when the echo tech came, she was DONE! It made me feel so relieved to see her fight come out for reasons other than getting through near death experiences. Seeing her use it to protect herself, to own up, to be heard, made me proud. I want her to be herself. I want her to know that she has every right to tell these people she is NOT HAPPY about this! Tonight is going much better. No tests left to do, no tape to pull, just hanging with her daddy tonight while mommy is at the hotel with the other 2. Waiting on pins and needles for the results from todays Echo.

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He gives us peace

Pin It Its been a pretty quiet day here. 
Quiet is good on a day like today. 
Bryan and I have made it a point to rejoice every single baby step of news that has come our way today as well as the miraculous news we put aside yesterday due to fear that overtook us. We traded our joy for sorrow. Never a good choice, but one that happens quite spontaneously when lives are shaken. So today, we traded our sorrow for joy! And it has been a much better day!
We avoided the operating room today by pumping loads of plasma in our baby girl. And bringing her INR up to a level that would be considered normal for you or I. And then we added the vitamin K. A scary thing for someone with a heart like Ivy's. But we had to focus on what could take her life away from us. Her bleed. It was that bad. And the bleeding was still really significant this morning. And we asked you all to pray as we trusted the one who made her. And we have faith that tomorrow her CT scan will reveal no more active bleeding. 

Our baby steps today are worthy of praise too.
Ivy does wake up when lifted from the drugs and she does act completely appropriate. She continues to have full use of both sides of her body and she answers questions by nodding yes and no. She squeezes my finger so tight and does the fastest head turn you've ever seen when she is looking one way and hears my voice from the other side. She is getting a little fluid overloaded, she's had an awful lot of plasma today. We are also using vitamin K. The doctors from both the heart team and neurology  have agreed that we need to put all focus on her head bleed right now even though we have a high risk of her mitral valve clotting with all this plasma and now vitamin K, (what causes your blood to clot)
We are holding on to hope that just as the Lord has given Ivy's old heart a second chance, He too will keep it strong as we focus on her brain and this bleed. 
She continues to be ventilated and sedated and showing us her will to get through this by fighting her sedation. She is thirsty! And she wants to wake up! Please keep that prayer circle going! 

It has been such a blessing to have my wonderful husband by my side. Being closer to home has us surrounded with family. We are so blessed to have my mom caring for Lexi.  And to have family close enough to visit when Little Ivy is feeling better. So tonight we rejoice in the baby steps. And we humbly thank you all for helping us get through this day with your kind words and fervent prayers for Ivy Joy. Our little Tiger Baby.

                  Time to go hat shopping! 











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Cath update

Pin It Our Little Ivy was in the Cath Lab by 7:15 this morning. She was given her happy juice in the holding area at 7am and it nocked her out cold. I suited up and carried her to the cath lab. They let me lay her on the operating table and stay with her until they were ready to begin. She never budged.

I took her beloved blanket straight to the washing machine here in the hospital (something I do every time she has surgery so that it is fresh and clean when she comes out). And the wait began. It is now almost after 11am and the wait continues. They have called me twice. Once to tell me the dreaded news that her right coronary artery is in bad shape and that they see some very severe narrowing/occlusion in one area. They were thinking it was possible that there was a surgical clip left behind but could not tell on film. They contacted the specialty coronary team here and they were headed here to give their expert advice on how to proceed. About 15 minutes later they called again to say that there was indeed a positive read when they did the stress test on her (meaning the narrowed area narrowed even further under stress) so they decided to try and balloon that area of the right coronary artery. She has had some pretty scary times in the cath lab when they have tried to help that right coronary in the past. Praying oh so hard that today will not be a day like the others. Oh Lord please continue to protect my baby girl. You made her strong, please let her use her fierce strength once again today!
I do not have any other results as to her heart function, her PH or anything else as of now. The doctor will come out to speak with me when they are finished and then we will make this our home until our little Empress is strong enough to get out of here. This morning when we arrived and she saw the holding area she looked at me with her pouted lip and said, 
am I gonna be scared? 
I told her no one would be scary and nothing would hurt. She would be asleep. 
She said will they hurt me when I asleep? 
Oh my heart!! She immediately read my emotion and she hugged me so tight and said 
don't worry mommy, the doctors will make my heart better in no time at all. And that was it! Flood of tears! She is so special!!!! An absolute HERO! Any way... The next thing she said was quick, run, lets get out of here!! Hurry mommy, run! She is such a little character!
And her last words to me before she fell asleep in my arms with the happy juice that nocked her out
 ....brace yourself now.... it's a tear jerker (NOT)
Where's my cheetos!!! I want my cheetos!
Oh well, I know she loves me to the moon and back :) And oh how we love her!!!!!
I will be back tomorrow to share. Today we are going to snuggle and heal and do whatever it takes to GET OUT OF HERE! Cheetos first though! Love you all.
Thank you for being our prayer warriors and friends! 


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January 6, 2013

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My darling Ivy. I sat here and watched you
as you slept in your hospital bed tonight 
for at least an hour straight. 
Confused by what is happening, 
worried beyond measure, 
without words to share with all the people that have been praying for you. And during 
this quiet time, I was reminded, 
God's love is being manifested 
in and through this time of suffering. 
And just as He promises you, 
God is going to take it away. 
We may not know when, but He 
is going to take it away and He 
is going to reward you in a way 
that will make all of your suffering 
seem as though it was not suffering. 
And He is going to give you everything 
you need for ever and ever—
millions and millions of years—
and you are going to be as happy 
as you can possibly be.

Mommy finds comfort in Revelation 21, 
"All crying and mourning and pain 
will be no more, for the former things 
have passed away." 
Mommy finds hope in your eyes, in your 
smile, in your heart!

As I watched you sleep tonight, 
I was thinking about how extra 
special you are. The way you talk, 
your little voice, 
your sweet nature 
and concern for everyone. 
You captivate everyone 
who meets you and you leave 
your handprints on their hearts. 
It reminded me how God builds amazing 
character, faith, love and depth out of suffering.  Some of the deepest, wisest, 
most loving, most patient, most 
ministering people I know, are 
the people who have walked the toughest journeys and suffered through 
the hardest times.
And so I am ending my post to you 
with a giant I LOVE YOU FOREVER! 
And my continued promise, 
to go to the ends of the earth 
for you and whatever your journey 
has in store. I will never 
leave your side, daddy and I 
will never leave your side, 
we love you to the depths 
of the universe and every 
moment with you is a moment 
we could never have had 
without our Ivy Joy! 

Friends our little peanut has been in the hospital since 

Thursday. We were watching her closely since the 

previous weekend as she was seeming to be a little 

puffy and had a bit of a cough. There was a lot 

of sleeping going on and it appeared that she had 

perhaps caught a little virus. She was eating and 

drinking and all of that, but she was tired and 

coughing a little. On Thursday morning she was 

sitting in her highchair and she kind of arched her back 

and stayed in that position. 

I pulled her out of her highchair and noticed she 

did not change her position and her eyes were looking 

to one side. I called her name over and over and she 

didn't respond. I told Cassidy to call 911, she was 

having a seizure. This was my first experience with 

a seizure and by the Grace of God it was very short, 

about 15 seconds total. 

While on the phone with the dispatcher she straightened 

right up and asked to go for a walk in her stroller! 

I still asked them to come out and they did. 

All was checked out, she looked normal, 

they left and we made calls to the cardiologist 

and her pediatrician. I suspected it was related 

to her electrolytes. It is not uncommon for kids 

on diuretics to be depleted of them, of potassium 

and sodium. Once we got in with the pediatrician 

it was decided to take Ivy straight to the ICU 

to be admitted and get some labs drawn. 

She did come back having low sodium so it is being 

suspected that this is what caused the little seizure. 

But in the mean time it was also suspected that 

this little cough that is getting progressively worse 

is being caused by blood backing up in to the lungs. 

And this would be really bad. And her echo revealed 

that her pressures are dangerously high. 

And something is going on with the right side 

of her heart as it has almost no squeeze... 

And so with great hesitation in typing this 

because it makes it harder to deny this reality I so 

want to wish is just a bad dream, 

Ivy will be having a Heart Catheterization on Monday 

to take a look around and see what exactly 

is going on with her heart. We know there is a 

problem but we don't know what. 

I asked the nurse tonight if there could be a problem 

with a mechanical valve, could you 

have regurge with a mechanical valve, 

I thought they were fool proof? She said yes, 

its not the norm, but it can happen. 

Seems to always be the case for my little love, 

not the norm but it can happen and then it does. 

It could also be her tricuspid valve. 

Both these valves are on the left and control 

the right side.. I don't know, Im going only off of 

small tidbits that are being thrown around 

for the time being. For those wondering, yes, 

I have been in very close 

communication with our Boston team 

since coming home and they are aware of everything 

that is going on with Ivy.  If we need to take 

next steps, those steps will indeed be taken

back in Boston.

So the facts I have are that she is very sick, 

she has a gray color.  Her face is very sunk 

in tonight but she still has significant 

swelling in her legs, feet, and belly. 

We know its the right side of her heart and 

we know her pressures are dangerously high. 

We know something is wrong and we 

know we need prayers without ceasing once again.  

Our little girl has been through enough, 

she needs a break, she is tired! She is exhausted! 

Please share our request. Please ask others to pray. 

On Blogs, Facebook, twitter, instagram, 

prayer circles, who ever you feel led to share it with! 

Please please please, storm the 

gates of heaven on Ivy's behalf, that she would be able to 

stop this constant suffering and 

pain and sorrow would be no more! 

Thank you

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