The end of 2016!

2016 was so much better than 2015 for us! It was still full of challenges, but it was also an incredibly blessed year for our family because Emma is alive and thriving with her new heart! She spent the entire year living life outside of the hospital!!! We are rejoicing and praising God for that!!

Not once did Emma have to go to sleep at night in a hospital bed like she had done so many times the year before. This year alone she had hundreds of appointments and blood draws, took thousands of doses of life saving medication and had a heart catheterization. But it was all outpatient. At the end of the day, we always got to take our baby to our hotel or home. No surgical floor, no ICU, no sleeping on hospital couches, no open heart surgeries, no blood transfusions, no extra oxygen...just a whole lot of living. 

It was only a little over a year ago that it looked like Emma would never leave the hospital. It was unlikely that she would even live long enough to experience her first Christmas. We were running out of options. We stood at her bedside heartbroken as we were staring death in the face. 

But then we were given word of a most incredible gift. Another family who was in the midst of tragedy had made a decision to donate their child's organs, which ultimately saved the life of Emma and likely other children around the country. Emma made it through that high risk surgery better than any of the doctors expected, which was an answer to thousands of prayers. She beat all of the odds, and continues to amaze us every day.

Yesterday marked 3 years since Mickey proposed to me, which reminded us that we've only been married 2.5 years and have a 19 month old who has had three open heart surgeries including a heart transplant, we've lived in 7 different places, and we bought our first house! 

We are so thankful for a full year together outside of the hospital, and are looking forward to many more! But we are also hoping this coming year is a little less eventful! 

Christmas 2016

This was Emma's second Christmas, but it was her first Christmas at home, and her first Christmas old enough and healthy enough to enjoy opening presents! We had a magical day celebrating the birth of our Savior, but also being filled with so much gratitude and joy for Emma's life as we watched her unwrap her gifts and enjoy the day! She almost didn't make it this far. We were so close to losing her, and yet God had a different plan. Her special heart came just in time, and she made it through an incredibly risky surgery and difficult recovery. We are just so thankful to be celebrating another holiday with our little miracle!

Feeding her baby!

When Emma finally woke up around 10am, she was SO excited to see her "new to us" play kitchen!! We were so excited to get it for her when we found it this summer, and it's been hard to keep it a surprise all this time! But it was definitely worth it. She's been busy playing with it every chance she gets! She also got so many other sweet gifts from family and friends! It's been a difficult year especially financially, but we have been so blessed and are so thankful for all those who have loved on our baby girl!

We even got to spend part of Christmas with Emma's little cousin and other relatives!

And after all of the excitement Emma fell right to sleep for a Christmas afternoon nap!

We hope you all had a wonderful Christmas too!

Emma's 1st Heart Day Pictures - October 25, 2016

Happy 1st Heart Day Emma!

You are such a beautiful, strong little fighter and your life is such a miracle! There were so many times that we thought you'd never leave the hospital. But after multiple open heart surgeries, caths, cardiac arrests, strokes, chylothorax, struggling kidneys and feeding issues...and a half of a heart that just couldn't keep going...You have a whole heart now! You're alive. You're home. You have normal oxygen levels. You don't turn blue when you cry. You're an 18 month old who loves life. You've learned how to nurse and eat. You love music. You love Minnie Mouse, You love animals. You're talking. You're learning how to stand. And soon you'll be walking! We Praise God for all of the answered prayers, and for revealing Himself so clearly in your life. 

That third week of October last year, we were preparing to say goodbye to you. The doctors didn't think you would survive much longer and there was nothing else they could do for you. So many issues would come up during rounds, and they would try to address things and make adjustments to meds, but at the end of the meeting, it always came down to the fact that your heart was giving out and you just desperately needed a new one. It felt like my heart was breaking into a million pieces. Your daddy had to go to a military training. So I was there by myself being told by doctors to start preparing to say goodbye, because if a heart didn't come soon, you weren't going to make it. I don't even know how to describe how completely broken and helpless I felt. I cried and prayed more than I ever have. I just wanted you to be okay. I tried to hold you as much as I could. I didn't want to get up from that chair at all, because I knew they were going to sedate you and I wasn't going to be allowed to hold you soon. I tried to hold onto every ounce of hope that I could, but things were getting desperate and you were miserable. Your daddy flew back right away when he heard the news from the doctor. I was so glad when he came back, so we could all be there as a family. They waited as long as they could to intubate you, because your little body was so sensitive to every little thing, that they weren't even sure you'd survive the intubation without going into cardiac arrest. They also told us that once you were intubated, you would stay that way until you either got a heart or were taking your last breaths. 

It looked like those days would be your last. But we didn't know, the doctors didn't know, nobody knew whether or not there would be a new heart for you. Only God knew what the future held. 

There was a family out there somewhere, who suffered a tragic loss, and chose to donate their childs organs and give other children a chance at life. Even though that heart came from so far away, they gave you a chance. Your doctors made a really difficult decision to give you that heart, knowing it might not work. 

I'm so incredibly grateful for the many answered prayers and miracles in your life that kept you alive long enough to get your new heart and get you through that surgery and recovery. 

I'm so grateful for the doctors and medical team that worked so hard to keep you alive and then took a chance on you by accepting that heart for you.

and I'm forever grateful for your donor family who chose to give the gift of life, so that other families wouldn't have to go through the loss of a child like their family was going through. 

Your life is a miracle, baby girl. You are such an amazing, strong little warrior and your dad and I are so proud of you. As challenging and frustrating as your strong will can be at times, I love it. Because that strength helped keep you alive, and I know you're going to need that strength for the rest of your life. I love you so much sweet girl, and can't wait to celebrate many more heart days with you! 

Love, Mommy