Every Heart Has a Story

A fellow heart mom, Stefanie, has put together a great blog event to help families connect with other families going through similar situations.  I have decided to join the event and tell "Lily's Story."

Our heart journey began on December 4, 2008 when we found out that our unborn daughter most likely had a complex congenital heart defect.  We were absolutely devastated.  Our doctor referred us to the University of Iowa Hospitals and they confirmed what we feared…our daughter did indeed have a congenital heart defect that would require open-heart surgery shortly after birth. 

The months leading up to Lily’s birth were an emotional roller coaster.  On one hand we couldn’t wait for the birth so we could meet our daughter.  But on the other hand I wanted to keep her inside because that was a safe place for her.

On April 22, 2009, Lily Mae Duve was born weighing 7 lbs, 12 ounces.  She was 20 ½ inches long.  We saw her for a brief minute before she was whisked away to the NICU.  It was 6 long hours before I got to officially meet Lily.  She was beautiful, even under all the IVs, wires and tubes.  Lily was officially diagnosed as having a criss-cross heart (extremely rare), transposition of the great arteries, a vsd and mild pulmonary stenosis.

For the next 10 days, Lily stayed in the NICU, getting stronger, learning to eat from a bottle and showing the doctors just who was boss…boy, was she a feisty one!  I guess that comes from the red hair!  I finally got to hold Lily was she was almost a week old.  It was the best feeling in the world.  I just looked at her in amazement and admired her strength.  Lily was then moved to the PICU to get her ready for her upcoming surgery. 

On Monday morning, May 4^th, Lily was taken into surgery.  I cannot describe the helpless feeling I felt as my newborn daughter was wheeled away with all her tubes and wires through the big double doors of the operating room.  About 2 pm Lily was wheeled back to the PICU and the surgeon came to talk to us.  Things hadn’t gone as planned.  The placement of the BT Shunt was successful but every time they would clamp off the pulmonary artery, her heart would stop.  This was heartbreaking news.  I had been looking forward to the surgeons coming in to tell us that everything was a success and we would be on the road to recovery and heading home.  Unfortunately, Lily had other plans.  It was back to the drawing board for the cardiologists and the surgeons.  When I saw Lily for the first time after surgery I just broke down.  This wasn’t the baby that I had sent into surgery.  The baby that I sent into surgery was pink, this baby that was wheeled back into her room was gray.  My baby was full of life, and this baby lay almost lifeless hooked up to so many machines and IVs that I couldn’t even count.  I felt a huge sense of guilt for sending her into surgery.  I felt like it was my fault that she looked the way she did and I can’t even imagine how she was feeling.  And to make things worse, they were asking me to send her in to surgery again…in only 4 days.

On May 8, Lily went in for her second open-heart surgery.  All heart surgeries are risky, but this was even more risky because they would be putting her on by-pass, meaning they would be stopping her heart to work on it.  They let us know in not so many words, that if this surgery didn’t work, they wouldn’t know where to go from here.  Basically, they would have no other options.  The time drug out slowly, until finally we heard from the doctors.  The surgery was a success!

My little miracle baby began to recover and before we knew it we were being moved down to the general pediatric floor.  Moving to the pediatric floor was awesome!  I finally felt for the first time like I was her caretaker, her mother!  I could pick her up and hold her whenever and for how long I wanted.  She could finally begin to eat real meals.  We were no longer measuring her meals in CCs but in actual ounces!  Lily made an amazing recovery and we were headed home 8 days after her open-heart surgery!

Life at home was pretty.  She very much seemed like a normal baby to us, despite the doctor appointments and medications.  Lily continued to grow and meet all her milestones right on time.  We knew though, that once again we would be heading to Iowa City for the second stage of her three stage repair.  When Lily was 6 months old, near the end of October 2009 we made the dreaded trip again.  All of the anxieties were setting in again-how long would we be away from home, how would big sister Ellie handle being away from us again, how could I let them take her into that operating room again, would she come out the same vibrant baby she was before, or would she not come out at all?  It broke my heart to imagine her going through another open heart surgery.

On October 28, 2009, we put our trust in the surgeons and our faith in God and handed over our precious baby.  This time around was a little different for me.  I felt a sense of peace and calmness when she was in surgery.  I knew God was with her and taking care of her and I knew she would come out of the operating room safely.  Mid-afternoon, Dr. Davis came in to let us know that things had gone very routinely and Lily would be heading up to her room in the PICU very soon.  Lily’s recovery went very smoothly and we left Iowa City only 5 days after her surgery.

Again life returned to normal for our family.  It has been nearly 6 months since Lily was last seen by her cardiologist.  Lily will have another surgery around the time she is 3 years old, but we don’t think about that.  We spend our time just enjoying each day with.

Lily’s is an inspiration to everyone in our family.  We thank God everyday that Lily is still here with us.  Things could have taken a very different path, but the miracle workers at the University of Iowa gave our daughter a chance at a normal life and for that we will forever be grateful.