“Our perfect, tiny, beautiful daughter was born with multiple congenital heart defects”
“Paula’s Broken Heart”
Guest blog by Cindy Rieber, Wish Kid Paula’s Mom
His words hit me so hard that I took a step back and sat down. I couldn’t think; I couldn’t breathe. The words “open heart surgery” and “death” kept ringing in my ears.
I clutched 2 ½-week-old Paula tightly against me and looked the doctor in his face.
There must be some mistake, I said. You must have the wrong chart. This is Paula. We are only here for a follow-up appointment.
He looked at me like I was crazy, pulled up a chair and clued us in. Our baby, our perfect tiny beautiful daughter, was born with multiple congenital heart defects.
We had no idea, even after spending a week in the hospital when she was born with several of those days were spent in the Neonatal Intensive Care Unit (NICU). The NICU doctor had told us Paula had a heart murmur and her pediatrician ordered an Echocardiogram (ECHO), but the NICU staff reassured us that it was not serious; it was nothing to worry about. So we took our tiny baby home and never gave it another thought.
Until we were sitting there, with tears running down our faces, listening to the Pediatric Cardiologist; Paula’s heart is broken.
I sat there trying to comprehend what he was saying. The one thing I just couldn’t wrap my head around was the thought of having to hand my baby off to a surgeon who would stop her heart, cut into it, and operate on it for hours.
The day we learned when her heart surgery would be started out like any other. I had taken Paula to the pediatrician for a check-up and we went to Wal-mart to pick up a few things. But then my phone rang and I could barely speak when I said hello.
Paula’s open heart surgery had been scheduled. I sat down on the floor in the baby department; all I could do was hold her and cry, then I cried some more.
When the day came, we packed up the Blazer and drove three hours to Rochester, NY. We watched as they poked and prodded at our tiny 3-month-old baby as they started her pre-operation testing. It felt like days instead of hours. The following morning, we left the Ronald McDonald House and went to the hospital. We were so scared. Would we ever see her alive again? Would she ever be the same again? Would we?
Handing her to a virtual stranger, knowing that he would cut her open, was the single most difficult thing I have ever had to do. My husband, Donny, and my brother, Jim, wrapped their arms around me as I wept; I didn’t think the tears would ever stop. We went for a tour of the Pediatric Cardiac Intensive Care Unit (PCICU). Then we waited.
Nothing could have prepared us for what we would see when they brought her back to us. She was so tiny, not quite 8 pounds. She had so many tubes and wires connected to her that it was hard to see Paula under it all. The surgeon told us that she was fixed and would never need another open heart surgery again, but we would soon find out that was not the case.
Yet, there she was; she made it through the surgery. Her daddy and I sat by her bed. They told us she wouldn’t be awake until the next day but I didn’t care, I wasn’t leaving her again. They finally extubated her the next morning. She came off the vent breathing on her own with her oxygen level at a perfect 100. The doctor joked we had to put her on a little oxygen so she at least looked like she just had open heart surgery. She wasn’t really awake yet but it didn’t matter; she was off the vent so that meant I could finally have my baby back in my arms again. Very carefully, the nurse showed me how to pick her up as to not hurt her. When she placed Paula back into my arms everything felt right with the world again.
After a lot of ups, and some downs, our Super Girl was released from the hospital after nine nights. At her first heart check-up following her surgery, we learned that although the surgeon was able to save her pulmonary valve it would eventually need to be replaced, that meant another open heart surgery for our Super Girl. We were hopeful that her next surgery would be put off until she was a teenager or young adult.
The first year after Paula’s open heart surgery was pretty crazy. We kept her pretty isolated for fear of her getting sick. Family gatherings were hard, people always want to play pass the baby, but for a baby like Paula, the germs from the common cold could potentially kill her so we didn’t take her out much. As she grew and healed, we were able to get out and do more stuff with her.
Her cardiologist was so pleased with how well she was doing that he slowly decreased the frequency of her heart checkups. By the time she was 3 years old, her cardiologist had made her appointments annual.
At her most recent heart checkup she saw a new Cardiologist since we moved from New York to Florida last year. The new Cardiologist scheduled a lot of tests, and Paula wore a 24-hour Holter monitor for the first time. It was concluded that her pulmonary valve is failing at a faster rate than was anticipated. She will need it replaced long before she is a teenager.
With this news, we decided we wanted Paula to have a few days of not having to worry about all the medical stuff. We applied for a wish trip to Disney World through Kids Wish Network. They granted her wish and we were off. When Paula found out she was going to Disney World to meet the Princesses she could hardly contain her excitement! The best part was that the trip fell between my birthday and Paula’s. We checked into the Calypso Cay Resort and headed off to celebrate my birthday. After a great family dinner we headed back to the resort. Paula took a bubble bath in the giant bathtub and we talked about what we would do the next day. I hadn’t told her yet that we were going to Disney World.
Early the next morning, Paula picked out one of her new dresses to wear and just before we walked out the door, I told her where we were going. The look on her face told us just how excited she was!
We spent several days at the resort visiting Animal Kingdom and the Magic Kingdom. We had the best time and Paula was the happiest I have ever seen her. Having Paula’s wish granted by Kids Wish Network was the best thing ever. Paula was able to be a normal 5-year-old girl. She met Disney Characters we would normally only see on TV; she got to meet Anna and Elsa from the movie “Frozen.” We watched as her eyes filled with wonder and amazement when Elsa turned Cinderella’s Castle into an icy wonderland. At the end of our final night Paula looked at me and said, “Mommy, this was the BEST DAY EVER!”
– Cindy Rieber
*Paula will be celebrating her 5th “Heartiversary” soon! Congrats Paula! KWN will be sure to keep everyone updated on her progress.