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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JOYFUL

Pin It I said I wouldn't be back on today.... But sometimes things change. And I didn't want to keep anyone hanging when here we are just sitting in front of Little Einstein's. Ivy with both eyes closed, for the moment, exhausted from this long day. Me with huge wide eyes, living on caffeine today! Filled with joy and relief to be passed this procedure and one day closer to having my family together again!
I finally got my eyes and hands on little peanut at about 1:30 this afternoon. She had blood coming out of her mouth as she tried calling out for me. It looks like they must have cut her somewhere when they intubated or extubated her. I have not found the source yet but it continues to cause bleeding. She wanted to sit up... you can't do that for 4-6 hours so we had some, "Somebody help me! Get me outta here! Help!!" Going on. Once she understood what we were waiting for and why, she calmed down and being very loopy from the meds still she started calling out to all the nurses! "Hi friend! You doing ok? Ya? You are? Ok! 
Then moves on to the next nurse. Hilarious! Had the nurses in tears laughing!
Then she suddenly started bleeding from every place they attempted to put an IV this morning. Oozing blood everywhere.  They attempted IV's in each foot, each arm, one hand, one foot. All were bleeding. They finally got an EJ in her neck (So uncomfortable!) and that was bleeding too. Her mouth, her nose, lots of blood. They decided to turn off the heparin drip early and put her back on her coumadin tonight. Then she ended up needing a blood transfusion so we are actually in the process of that right now. They ran labs to check INR and she was 8.5! No wonder she's oozing everywhere! 
She ate a few cheetos, drank a lot of water and seems to be uncomfortable and anxious. She is on oxygen for her sats right now. When we take her off she drops to the high 60's so she clearly has some recovery to do tonight, the cath was long and took a toll on the little peanut. Any way, the end of this update is the part I'm so excited to share!
Ivy's nurse from the transplant team came in to see me tonight. While she did not speak of her overall right or left side function or the future as far as Ivy's heart goes, they are saving that for our appointment with the whole team on Thursday. She came to visit us tonight because she could not wait to tell me that Ivy's pressures are NEAR NORMAL! Her pulmonary hypertension has dropped more drastically than they ever experienced in just 3 months and they are ecstatic! She will no longer require oxygen!!! Did you hear that.... coming home with NOTHING hooked to her! She will stay on Sildenofil until her next cath (no date for that as of yet but guessing 3 months from today) and then wean off right before that cath to measure true pressures with no assistance from the medication. This crazy expensive medication is not covered by our insurance so as absolutely out of control happy happy happy as I am for baby girl, I have to be honest and tell you what a financial relief that will also be to Bryan and I. 
The news on her coronary artery is that there is a suit has scar tissue growing all around it and the scar tissue has basically pushed the coronary artery to a nearly closed surgical clip right next to her RCA. Scar tissue grows around foreign objects and this scar tissue that has grown has caused her coronary to be nearly closed in one area. It is not the area with the holes. It is lower and it was successfully ballooned today. Since she is so young they felt that a stint was not an option but it will likely need to be ballooned again during her next cath. The great news is that after it was ballooned, it showed better flow! 
Alright, back to cuddling my little peanut! She is waking up and she has a tummy ache :(

Romans 12:12
Rejoice in hope, be patient in tribulation, be constant in prayer. Pin It

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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Upcoming Heart Catheterization for Little Miss Ivy

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 2 1/2 Amazing months of a healthy girl! No hospital stays, No pulmonary effusions, No Edema! 

 This little girl has amazed us. Not just by the way she carries on, but by the way she does it with such joy! She wears her oxygen day and night but gets so excited for  her moments off the oxygen to play un tethered for a while. She takes her 21 syringes of medication with no hesitation now, no bribery needed. She loves that she has become a little girl and can run and play now. She has discovered her independence and is often found trying to do big kid things saying, I Do It MYBYSELF!

On August 5th Ivy will head back to Lucile Packard Children's for her next heart Catheterization. It will have been 3 months since her last one and we have high hopes that this Cath will hold wonderful news for our baby girl!

 We need to hear that Ivy's pulmonary hypertension has lessened. That her pressures are at an acceptable level for a transplant. Or, our biggest hope, yes, this one is our hope for a miracle, we pray that the results show that her heart is recovering and after some much needed rest and all of these heart failure medications, it is working! That it is recovering and that we may be able to save the heart she was born with. We know whatever the plan, it will be the perfect plan for Ivy Joy. 

Before We head to Stanford, the girls will be in their cousins wedding and we will get to spend a whole week with our family there. So many relatives still yet to meet little Ivy! The girls can hardly wait! 

Thank you for keeping our daughter in your thoughts and prayers. So many of you have emailed to check on her and left comments assuring that your family continues to keep her in your prayers. We love and appreciate you all so much! 

Heart Cath work up/pre op August 5th, 2013
Cath August 6th, 2013 

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