Thursday, February 13, 2014

Day 13 - Ivy Joy

Our story was featured on 28 days of hearts last year. you can find it here.

We shared the story of our precious Ivy Joy who had been home just barely one year and had just been home from the hospital for 11 days after undergoing  5 consecutive open heart surgeries. It had been quite a year. And we were certain this new year we’d begun would be quiet and far less interesting! 

February was fantastic and so was March! We were overjoyed by things that would make the average parent crazy. Our toddler climbing on things, making huge messes, protesting naps, and finally having the energy to learn to walk. But in April, Ivy began to decline again. She had developed a higher level of heart failure, her heart was barely squeezing, her pulmonary hypertension was at its worse and her belly was getting huge again. We took her in for an echocardiogram and they admitted her to our local Children’s hospital. I was crushed. I had been planning her Birthday Party for weeks. A celebration of her amazing life, and here we were, back in the hospital where she had spent so much of the prior year. She was placed on Milrinone immediately and it made a huge difference for her. 

Our team of doctors in Boston worked closely with our cardiologist here in Phoenix and decided that it would be in Ivy’s best interest to have an exploritoty Heart Cath here in Phoenix to see exactly what was going on this time. She was stronger than she had ever been going in to a Cath, and she proved that strength coming out of her cath just fine. But the findings were terrible. Boston and Phoenix agreed that Ivy’s heart was just not squeezing efficiently and her pressures were very high. She had been through so much and while they thought that after a few months time, her heart would bounce back, for some reason it was not. There was just too much scar tissue and patches and so forth. Parts of the heart with a patch or scar tissue do not squeeze with the heart. 

Boston and Phoenix both agreed that it was probably time to look in to listing Ivy for a new heart. 
As sad as I was, I was so grateful that we had other options. 

Ivy, in her true Ivy fashion, pressed on. She was put on 24/7 oxygen and Sildenafil as her new therapy to treat her pulmonary hypertension. She got out of the hospital 48 hours before her birthday party. 

We celebrated big and I will openly admit that I feared this may be the last Birthday we would be so blessed to share with our precious daughter. I had watched her go through so much already and I just could not imaging her having to go through any more. I was so scared. And as I educated myself in this new world of heart transplant, I became overwhelmed. And then God… Oh how He cares so well for me. For us. He took me just as I was, doubting, fearful, desperate, and He filled me with His hope. He reminded me what He had already done and all the He had made beautiful. I was instantly refreshed and my Joy returned. I had everything I had asked for. My sweet girl knew love, she knew Jesus, she had a family who adored her and we were not done fighting for her!

So that was May! We spent the next 3 months using 24/7 oxygen and lots of medications. She was thriving. She was happy. She looked amazing!

We were set to have another Heart Cath. This time at what will be our new treatment hospital, Lucile Packard in Northern California. 

We traveled to Northern California in August. The girls were flower girls in my cousin Cindy’s wedding and then we headed to Lucile Packard. The purpose of Ivy’s cath was to see if her lungs showed enough improvement to be an acceptable candidate for a heart transplant. If they felt her lungs could handle it, if her pressures were down, she would be listed for a heart right away. If not, we would continue the therapies for a while longer in hopes that there would soon be improvement.

Her Cath went well, they were able to put a stint in her coronary artery to help with damage that her first surgery in Phoenix caused. And the best news of all, news that blew our minds! Ivy’s heart was squeezing! Her pressures were way down! Her heart was functioning better than it ever had. 
Ivy would not be listed for a new heart… Because at this time… her heart was doing good enough! Words I will never forget.

Oh how I wish this was the end of that beautiful story. But it is not. Our sweet girl was complaining of pain in her head when we left the hospital. They said it was innocent headaches from the anesthesia. I did not believe it. I called the fellow on in the CVICU and they too told me to settle in for the night, she was fine. I barely made it through the night. She was clearly not well. I called again. They said not to take her to the ER due to all the germs but to bring her to clinic as planned in the morning. I was there before anyone else. She was rolling her eyes back when she had her spells and I was terrified. Once the cardiology team saw her they agreed this was not right. We rushed her in for a CT scan and it was there that they found a huge bleed on her brain. 

We had hoped to be on our way home the next morning, but instead, Ivy would need to have a craniotomy that night to drain the massive amount of blood that had collected. Her scull was removed and the blood was drained. 2 drains were placed and her scull was glued back on. The doctors were expecting some brain damage due to the amount of blood. Her brain had shifted to the other side of her head and you could bounce a quarter off of it, it was so tight. 

I remember my every thought and feeling that night as they were performing the surgery. And I remember just sobbing for my baby girl that could just not get a single break! 

Once out of surgery and ready to wake up, Ivy again showed us all her strength. She was sitting up, blowing bubbles, singing songs and using both sides of her body within hours of being extubated. Not a bit of brain damage or weakness. I remember showing her that all her hair was gone and talking to her about how beautiful she is. I remember how swollen her face was, one eye swollen shut, and her spirit, her beauty, just filling the room. She is such a gift from God! There is just something about her! 

Because of our Ivy Joy, all of the days of sitting beside her, comforting her and helping her heal. Days at home when she was too sick to get off the couch or out of bed. Days, weeks and months we lived in the hospital together. Because of her, we understand hope more than we’d ever have without her. We understand a different joy. A joy that can only come from spending time with Jesus. From seeking Him rather than things of this world. We know suffering, and we know thanksgiving. We know happiness because we have experienced such sadness watching our baby go through so much. We know our God in ways we've never known Him before. That had to have been His plan all along. He is always trying to reveal Himself to us. Sometimes the only way is through suffering. My heart swells just thinking about how very far she has come.

In late August we left California with our very bald, very happy little girl and headed back to Arizona to start the next faze of the new normal. Whatever that means. Life will never be normal here and we are ok with that.

September was so good! And October! And November! And December! And while we had a difficult time getting over some illness in January, here we are. Ivy is healthier than ever. She is growing! She will be 4 years old this May. Every breath she takes is a gift. Every day we have to smother her with kisses is a day we would’t miss for anything! 

On March 26th Ivy will have another heart cath at Lucile Packard. She will have a larger stent put in her coronary artery and they will once again check her pressures and evaluate how her heart is doing at this point. 
As much as I dread that day, and the memories that already haunt me from her last cath, we celebrate that she is ready for this next step and that she is still using her very own God given heart. We pray for continued improvement and rejoice in the profoundness that she is with us and doing so amazingly well!

Our family thanks you for your faithful prayers. Some of you have prayed for her since before she even came home from China. Many of you have never even laid eyes on her. Thank you. Thank you for your kindness and compassion towards our family. Thank you for continuing to encourage me as a mother and an advocate for my child. My desire is that all will see the goodness of a merciful God in the ugly, and in the miraculous. Adopting a child with a complicated heart defect has been the greatest gift and most passionate merciful love story that we have been so blessed to be a tiny part of.

I am so glad that Bryan and I chose to get uncomfortable, walking away from easy and in to this path of unknowns lead by the hand of our Father. He has such a plan. Such a great great plan. And while it may have been a hard 2 years. It has been an amazing, incredible. miraculous, rich 2 years. And we like that much better than and easy, dull, fruitless, effortless, self centered 2 years. We are blessed!


Drea said...

I always love an Ivy update!

sierrasmom said...

Your words are a true testament of your Faith and all of Ivy's miracles are a true testimony og Gods love for us!! Love you Sammons Family!

Suzette Jones said...

Such a beautiful story of God's amazing grace and mercy! He has performed many miracles on your precious Ivy, hasn't He?!

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