Lucy's Amazing Story
Lucy's story began July 2011. Bill and I were referred to a high risk doctor because the baby's heart rate had been low since 8 weeks. At 15 weeks gestation Bill and I went for our ultrasound. We found out we were having a girl...holy cow...a princess I have always dreamed of, who would be named Lucy. Within seconds of amazing news, our world came tumbling down. The doctor started telling us all this bad information that suddenly became a blur. "Possibility of down syndrome, stomach is on wrong side of body, most likely has a heart defect, and heterotaxy." I remember asking, WHAT? Was she going to be okay? Was she going to die? That drive home from the hospital I cried harder then I ever had. I went right to Dr. Google (bad mistake). If you google heterotaxy, nothing good comes up. The waiting game began. Lucy had to grow to 20 weeks before we could get a better look at her heart.
20 weeks finally arrived. Can you imagine waiting 5 weeks to see what your daughter has wrong? You know something is wrong, but what? Bill, my sister, and my aunt Beth went with me the day I was getting a fetal echo to see what was going on with Lucy. At this appointment it was confirmed, Lucy had heterotaxy. We would not know the extent of her heart problem until birth. We opted out of an amniocentesis. We didn't care if she had down syndrome, she was meant to be our daughter. Our journey then started who the best heart surgeons were, the best place for treatment, etc.
The rest of the pregnancy I made the best of. We didn't know what was going to happen, but I owed it to Lucy to try and stay worry free (easier said then done). It took an emotional toll on our whole family. Without everyone's support and prayers we would have been lost.
My
c-section was scheduled for December 15, 2011. I was so blessed to
have an amazing OB who held my hand every step of the way. I was
originally going to deliver at Carmel St. Vincent's, but due to Lucy's condition we needed a higher NICU level. Dr. Dupler, being the amazing
doctor he is, followed me over to IU North and delivered a beautiful
baby girl weighing in at 8 lbs 14 oz. She came out crying and so full of life. She was blue in her fingers and toes, but she looked so perfect to me. I gave her a quick kiss and off to the NICU she went. As if I wasn't hormonal enough after having a baby, I was so sad she couldn't be with me. I hated getting in a wheelchair, going down to floor two, and seeing my baby like I was a visitor. I remember always passing the "normal" nursery on the way to the NICU and was so jealous of the "perfect" babies. My baby was perfect too.
Right after birth Lucy was sent away for many tests. The results did not come back how we were hoping. This was just the start of all our up hill battles with Lucy. She has Complex congenital heart disease,
complete AV canal defect, ventricular septal defect, atrial septal
defect, essentially a common atrium, large PDA, right-sided IVC with
continuation to an azygous vein, left SVC draining to the coronary
sinus, malrotation, single Right Sided spleen, and Stomach on Opposite
side (right side). At just four days old she was transported down to Riley Hospital. She remained in the NICU for 5 weeks.
Here is how our typical day went:
7 am Bill would head down to check on Lucy, then go to work.
8 am Courtney would spend breakfast with Barrett and then head down to Riley for the day. I would pump milk for her every 4 hours, even though she wasn't eating at the time.
7pm I would head home to see Barrett before bed.
8pm Bill would go sit with Lucy after work.
11pm Bill would come home.
Barrett was amazing through all this and it wouldn't have happened without my amazing parents and in-laws. The poor boy was so confused. He didn't get to meet Lucy because the NICU was closed with it being RSV season.
Long story short, Lucy's first surgery took place in January 2012. She had a PDA ligation done. This surgery was to help hold her little body over until her big open heart surgery. She needed to grow and gain some weight. Here is our first family picture- the very first time Barrett ever got to meet Lucy. She was in the PICU after surgery.
The days went on, slow I might add, and Lucy was just trying to grow. She had to be fed through an NG tube because her heart was not working well enough. She would get very tired when trying to nurse or take a bottle. The NICU nurses were so wonderful and loved helping me play dress up with Lucy:)
Her second surgery took place on February 13, 2012. She had laproscopic malrotation. Here she is rocking a bow on the IV in her head...After this surgery we discovered a new place...the Heart Center. She was out of NICU and now on the heart floor. We loved it here! We had our favorite nurse, Grace, and our WONDERFUL cardiologist, Dr. Farrell. They took care of us beyond imaginable.
It took Lucy two weeks to recover from her malrotation surgery and then we got to take her HOME!! Yes, HOME! We could go HOME for a couple weeks before the big heart surgery. We were a "normal" family, a family of four, under ONE roof!
As much as we loved being home, it was rough. Lucy was still very sick. She had a heart that needed to be repaired. She worked VERY hard to breath and it was super scary to watch. It was only a matter of time until we had to head back down to Riley. Lucy was scheduled to have her surgery in April, but showed us she couldn't wait. God knew all along it was going to be okay. We had the best heart surgeon ever, Dr. Mark Turrentine. This doctor took care of my baby better then I could have hoped. He truly cared, checked on her 24/7, was beyond brilliant, and gave us hope and reassurance. Not the best picture, but here is my hero, the doctor that 100% gave my daughter a second chance at life...
March 22, 2012. Worse day/best day of my life. My daughter was going to be able to breath, live, smile, run! Interesting side fact; it was my mom's birthday and father-in-laws birthday. Here is my baby right out of surgery.
It about killed me seeing her like this. She was on the ventilator for 11 days. 11 days I sat by her bedside praying she would wake up and be the same Lucy. Our God never fails...she woke up the same Lucy!
...and SMILING AGAIN!
We made it. We had so many people praying for our daughter it was incredible. She pulled through and is now healthy. She never gave up, quit, or disappointed. She spent her first Christmas, New Years, Valentines Day, and Easter at Riley Hospital. It took a village of people to get us through this nightmare. It brought Bill and I closer then ever. It made you realize what's really important in life. I could never thank everyone enough. In June of 2012 we had a "heart party" celebrating Lucy's new repaired heart. We collected over 500 headbands and outfits to give back to the Heart Center at Riley Hospital. We had over 150 people come to the party and I was so glad I could thank each person.
Lucy has come so far to date. Her last hurdle was getting her feeding tube out. No surprise, Lucy did it! The doctors were so insistent on putting in a more permanent feeding tube, but mommy and daddy knew we had to give Lucy a chance first to try to eat like a normal baby. More answered prayers, she took to nursing AND bottles!!! This is very rare when you have become so dependent on a feeding tube.
1. God is in control.
2. Miracles DO happen.
3. Meals are a huge blessing.
4. KLOVE kept me sane.
5. The power of prayer is amazing.
6. Live each day to the fullest.
7. Family and friends are so important.
8. Hug your babies each night.
9. Cherish each smile.
10. Lastly, never give up and never loose your faith…
2. Miracles DO happen.
3. Meals are a huge blessing.
4. KLOVE kept me sane.
5. The power of prayer is amazing.
6. Live each day to the fullest.
7. Family and friends are so important.
8. Hug your babies each night.
9. Cherish each smile.
10. Lastly, never give up and never loose your faith…
