Wednesday, June 4, 2014

1 year post Fontan!!!

1 year ago today we left our home to head to Dallas. We were to have pre op as soon as we arrived. The next day we would be sending our 2 year old in for her 4th open heart surgery. The emotions I am feeling as I reflect on the events that occurred that June day a year ago are mixed. I'm overwhelmed with thankfulness that Ella is here today and that she continues to blow her cardiologist away with how well she is doing, but I'm sad to think about all the pain she went through. It was a traumatic experience and so it's hard to relive, yet it is rewarding to think through the miracles that occurred. As we looked back at some of the pics this evening with Ella, she told us all the things that happened, she talked about her ouchies and the Ronald McDonald house, she talked about her red wagon rides the walking and watching Cinderella, " I was so brave", yes Ella, you were SO brave sweet baby! It's crazy that was a year ago, it seems so close and I guess it also feels somehow like another life altogether.

The Fontan was Ella's last scheduled surgery. Her future is now a mystery. We know she will need further surgeries eventually or possibly a transplant someday, but we don't know when or what. I couldn't wait for the burden to be lifted of not having anymore planned surgeries hanging over our heads! It was a relief for sure, but not knowing what's next is a burden too. Just one of those things I have to only allow myself to think about and not dwell on. I think about Ella's special heart probably over 100 times a day. That may sound obsessive, but I don't think so. It's just my new life. You see everything about my life changed when we heard those doctors words before he offered us an abortion. I knew then what I know now, Ella is special. Ella is a fighter, and she is proof that miracles still happen and that God is bigger then an 80% chance of death. God is bigger then her crashing twice. God is bigger then 4 open heart surgeries. God is bigger then the unknown. For as long as God grants us with our daughter and as long as she fights we are going to be fighting with her. 

It is such a big milestone to be celebrating being 1 year post Fontan. Preparing for this surgery was one of the hardest. Ella was such an established part of our lives and my companion day in and day out. Every moment with her was cherished and thinking about taking her to a place full of strangers holding her down while they had to hurt her, seeing her on a ventilator again, knowing they would stop her heart from beating and attempt to restart it hoping her body would accept the changes of her blood flow... all of would just take my breath away. I remember it was pretty cloudy that day, June 5th 2013, and as we set in the waiting room anxiously waiting for our hourly updates, every once in awhile the sun would come out from behind a cloud a shine so bright it would light up the room, I'd say "there's our sunshine letting us know she's okay" :) while I know she doesn't control the sun I do know the one who does and those peeks of the sun gave my heart a little joy on that hard day. 

When Ella woke up she was fighting to sit up. She was still on the ventilator and it took four adults to hold her down just about an hour or two after open heart surgery. They tell us the fighters often do well, that was our girl! She wanted to walk, she wanted to go home,  she wanted a potty because she was a big girl and big girls don't use diapers, she wanted water and cheese, she has pushed the expectations from the time she was born. Day two of recovery from her Fontan and she walked over 450 ft. Straight. Her strength and resilience is amazing and is no doubt a result of the thousands of prayers being said on her behalf. We thank you! 

The day we were released to go back to the Ronald McDonald house to wait for her follow up appt. she ran for the first time in her life. I cried then and I can't help but cry now as I think back to my 8 day post op little 2 year old sunshine running down the hall. She wasn't out of breath. It had been so long since she could even walk a short distance without dropping her oxygen into the 50s or lower, she was blue and couldn't catch her breath. Seeing that change immediately we knew we made the right decision. This surgery will drastically impact her other organs negatively, especially her liver, but life is about quality over quantity with her. While I want her forever, I would rather her have a shorter full life then a (possibly) longer life with major limitations from her own body. She still has and always will have limitations, but seeing her energy level raise SO much was amazing! 

Today when you look at her you would never know. She may not run fast and she may struggle to jump, but she is improving everyday and she blows me away! These are just a few of her accomplishments- She can count to 100, she knows her alphabet in English, Greek, and American sign language, she knows basic addition and subtraction, she knows Every letter and the sound it makes, she is learning to sound out words, she can write her name and a few other small words with some direction, she sings, she just finished her first group event ever with her semester of dance class (and was a Rock star on stage with NO stage fright), she is learning and growing before my very eyes and it is such a privilege to be her mommy! When God made Ella he made a beautiful inspirational story. I consider it an honor to share it with all of you! 

Isn't God so good? I know that God could have taken her and still He would be sovereign and in control, but for whatever reason He has thus far spared Ella's life and we are so humbled He gave her to us. I pray that you always see His fingerprints all over our lives as we strive to point to Him as we live this crazy up and down adventure called life. So as this day comes to a close I think back to 1 year ago today, I was laying my baby down to bed in the Ronald McDonald house and praying to God that it wouldn't be the last time I would get to tuck her in. Praying that she would fight. Praying that once again He would hold her in His hands while her surgeon worked on her tiny lifeless heart. Praying that she would understand that we loved her and hadn't betrayed her. Begging for His strength and peace. Tonight, 1 year later I get to tuck that sweet sunshine in bed and tomorrow we are going to celebrate! Celebrate life, celebrate God's mercy, celebrate miracles! 

                  {Running for the first time}

1 comment:

  1. So beautifully written. I can't believe it's been a whole year. I'm so happy with how far Ella has come and glad for your whole family. Bless you all.


Note: Only a member of this blog may post a comment.