Our baby the one who changed our lives is 4 today!!!!
HAPPY BIRTHDAY ELLIS ANNE!!!!
As most moms are, I was devastated when I found out that the baby I was carrying would be born with Down Syndrome. I had several previous miscarriages, and I prayed hard that God would allow me to have a miscarriage with this baby also.
I was MAD, real MAD. God knew what my plan was for my life and He was ruining it; He was giving me a baby with Down Syndrome. I stayed mad my entire pregnancy telling God everyday that I was not going to be able to love a child with Down Syndrome....even up until the day that I had her.
Ellis Anne was born on October 13, 2008. She was 4 weeks early. In addition to having Down Syndrome, we also knew that she would be born with a severe heart defect known as hypoplastic left heart syndrome (HLHS). In short, a condition in which the left side of her heart would be too small to do it's job. Because of her dual diagnosis of Down Syndrome and HLHS, we were told by doctor's that she had a 50% chance of living. Ellis Anne was airlifted via Angel One to Arkansas Children's Hospital immediately after her birth. I did not get to hold her before she was taken away, but only got to look at her through the isolette that she would be traveling in.
I stayed in the hospital while Reed and my sister traveled to Little Rock to be with Ellis Anne. I still had not connected with my child. I was released early from the hospital and traveled home to be with my oldest children as Ellis Anne's birth was early and we had left our house with nothing. We had to pack and be prepared to stay in Little Rock for what was going to be a long road ahead. Still no connection to the baby in the isolette.
We finally arrived at the hospital. I had never stepped foot in that hospital before. And now, I was going to see my own child, for really what was for the first time. I was scared. Very scared. We walked into the NICU unit. We put on gowns. Were instructed on the importance of hand washing and how to wash your hands. Went to the desk and asked to see our baby. She was at pod 26.
We walked pass all of the babies.
These were not healthy babies.
These were sick babies.
I had never seen so many sick babies in my life.
My baby was a sick baby.
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| (photo taken after her 1st heart surgery at 7 days old) |
For what seemed forever, we walked through the pods. Finally, we were there.
And in a second.
My life changed forever. My heart was changed.
I was in LOVE with my baby who had Down Syndrome.
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| The first time I ever got to hold Ellis Anne. |
It's a change and a love that I will never ever be able to put into words.
It's a love that I am still sobbing about as I write this post.
GOD KNEW.
SHE WAS PERFECT AND I LOVED HER DEEPLY!
At 7 days old, Ellis Anne had her first heart surgery.
We stayed in the hospital for 6 long weeks.
But Ellis Anne, my little fighter (she still fights till this day), recovered well, and we got to go home!!!!
We spent the next four months at home with Ellis Anne. She was kept at home and isolated from visitors and the outside world. We made trips to our cardiologist weekly and then bi-monthly. We made many middle of the night trips to Arkansas Children's Hospital (which we live 2 1/5 hours away from) because of lowered oxygen levels which we monitored throughout the day and night. Yes, we were at home, and it was very good to be home, but the uncertainty of whether Ellis Anne's heart would be able to be fully repaired loomed over us every day...
every. second.
Ellis Anne had undergone a "bandaid" surgery, but it was the surgery that was to come that would determine if Ellis Anne would get to be a part of our family.
That time came at 4months old. The doctor's and surgeon decided that is was time. Ellis Anne would undergo one of the most invasive heart surgeries done on February 10th, 2009. Doctor's would perform a biventricular repair. This would be Ellis Anne's chance at life.
The surgery lasted 8 hours and it was the longest day I have ever experienced in my entire life.
Because of swelling her chest was left open. To close her chest would have caused her organs to go in to shock and shut completely down.
The first 48 hours were the most crucial.
Days went by and Ellis Anne was recovering in her own time. Her chest was closed.
Medicine's were weaned. Tubes came out.
Ellis Anne was waking up.
And after 4 weeks, it was time to go home!!!!!!!!
FULLY REPAIRED.
A WHOLE HEART.
HEART FUNCTION TOTALLY NORMAL
GOD HAD SHOWN HIMSELF
AND FOR ELLIS ANNE'S LIFE
WE GIVE HIM ALL THE GLORY AND HONOR.
HAPPY BIRTHDAY ELLIS ANNE.
GOD GAVE ME YOU...
SO THAT WE WOULD ALSO CHOOSE ANYA.
YOU ARE LOVED!!!!!!!!
Thank you for changing all of our lives.
LOVE,
MOM, DAD, MARY CLAIRE, AVERY AND ANYA
