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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A little love

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Today, Ivy has decided to rest. She was up for 10 hours straight after being extubated yesterday. Not because she was wired and feeling energetic, but because she did not want to miss a thing. If something else was going to happen to her.. she was not about to sleep through it again! So around 11pm she closed her eyes for the first time all day. But she made sure to wake up every 30 minutes or so. She'd ask her amazing nurse Lesley what she was doing. Why she was doing that. She used her little potty (this girl amazes us how even in her current condition, she uses her potty even in the middle of the night) she drank lots of her beloved water and she was content. This morning she is resting up! She slept until about 1pm, woke up to go potty and is now trying to have some soft food. She really isn't interested in food yet. Such an odd thought for our little muncher! Her last drain on her head was removed this morning. She will get her Arterial line out later today and possibly the NG tube they were using for meds. By tomorrow we should be moving over to the non intensive care cardiac floor. 
We spoke with neurologists in more depth today. Probably because they can see now that she is acting 100% normal. We were told that the extremty of her bleed was very impressive and that the brain was so tight that they could bounce a quarter off of it before releasing the blood. Not good!!! So once again we praise God for getting Ivy through in miraculous ways! Today her right eye is swollen shut, and her right side of face and head are very puffy. Normal, but doesn't look too comfortable. She shines like a super star regardless. She keeps asking me why all the other babies are crying. I tell her because its not much fun here. The nurse tells her because they just aren't Ivy Joy. Whatever the case, I pray for all the friends as she calls them, sharing this pod with us and that all of them are home in their own beds soon! Pin It

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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Wedding Day

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The girls had a wonderful time being flower girls at our cousins wedding last night. Ivy had spiked a fever the night before and continued with it through the wedding but she was such a trooper and lasted until 10pm. It was surreal for us, seeing the little girls together, getting ready, walking down the isle, making special memories. We are also so excited to be welcoming our new cousin Myles in to the family. He too, like our little girls, grew inside his mothers heart, rather than under it, and joined his family through the gift of adoption. 

                         Lexi Jade. Dressed and ready to go!

                  Ivy Joy. Dressed and oh so ready to go!

                                                                 
                   Lexi above, Ivy below

                                                         

Lexi, waiting patiently

Ivy waiting patiently

 There was a whole lot of waiting and waiting for the 6:30pm wedding! I am so proud of how patient and sweet the girls were the entire day!

And what a sweet surprise when the bride asked them to come inside her tent!

Tomorrow we head to Lucile Packard Children's for the week. Please keep Ivy Joy in your prayers!

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