I found out we were expecting our second child on our seventh wedding anniversary. I surprised my husband,
After several hours of waiting for Sydnie to arrive from the nursery, my mother in law began to go back and forth to the nurses’ station asking why they hadn’t brought her out yet. She was told that since Sydnie arrived via cesarean, she needed a bit of oxygen and would be with mom and dad shortly. With no worries, my husband and mother in law left my room to go get lunch and I waited anxiously to see my baby girl. While they were at the cafeteria, a woman entered my room and asked if I was
That was the end of my blissful day. At that very moment, my whole life would change instantly. I remember it like it was yesterday. I remember the way she looked… her small thin stature, those glasses that looked like they were at least eight or nine years old, the lack of make-up on her face, and her very short hair.
I began to sob and cry. I remember sounds coming out of my throat that I’d never heard before. She was talking and it seemed like time had stopped at that very moment. I thought to myself, “This isn’t happening. I must be dreaming, yes, I’m dreaming.” I looked away from her briefly and looked out of my hospital room window and back at her. That’s when I realized I wasn’t dreaming, she was really there and really saying those awful things about my perfect baby.
“You have a very sick baby,
When they arrived back at my room, I was a total wreck. I could hardly speak and the nurse had to help tell them what was going on. My mother in law cried and my husband went silent. He quick speaking almost immediately and that lasted for hours. He was completely shocked and I could tell he was afraid.
Hours later, they brought Sydnie into the room for us to see her before they transported her to UNC. By then, my father in law was with us and my husband had called my mother, who was at home taking care of our older daughter, and broke the news to her.
Within two days, it was discovered that Sydnie suffered from Hypoplastic Right Heart Syndrome, Pulmonary Stenosis, and Tricuspid Stenosis. She would need open heart surgery as soon as possible. I was still in the hospital recovering from my c-section and
I couldn’t be with her for her first Balloon Valvuoplasty on June 3, 2004, nor her first open heart surgery (BT Shunt) on June 5, 2004. I had pulled several stitches loose and was on complete bed rest for several days, due to my intense stubbornness to try to get to my baby. We met with a team of doctors in a small, room around a large table. Everyone was staring at us and telling us how sick our baby was. We were shown diagrams, photocopies, drawings, and interrogated about how she’d gotten her condition. We were told her heart defects were a “fluke”. When I finally got to see Sydnie, I lost it in her ICU room. There were tubes coming from all over her tiny body. She was so small, but so swollen and the machines that surrounded her were loud and threatening. She looked like she was dead. I can’t explain it any other way. It was horrifying to see her that way and at the same time, it was a blessing that I “could” see her at all.
It was so hard to go home from the hospital without my baby. When I was released and taken home, I broke down after walking into my home and seeing my older daughter, my mother, and all of Sydnie’s things. I remember my oldest daughter, who was two and a half years old at the time, telling my mother that “mommy’s sad and don’t cry mommy”. From that day on,
We were assigned to a Pediatric Cardiologist, who would oversee Sydnie’s progress and decide when she’d need her next surgery. At about five months old, we’d noticed that she’d become clammy and pale at times and went in to have a routine check-up. During her appointment, the doctor discovered that the BT Shunt was no longer working for her and that we’d need to do another Balloon Valvuoplasty to see if the blockage could be opened or if she’d need the second of three surgeries that were required for Hypoplastic Right Heart children.
On
We made arrangements with the
Her stay was shorter this time… seven days. After her recovery, she was tested and accepted into our state’s children’s wellness program and began physical therapy once a week to help her with her sitting, crawling, and walking abilities. By the time her physical therapy was at an end, she was almost walking. It was amazing to see the progress she’d made over those six or seven months of therapy. She amazed us each day with her new tricks and her determination.
She has brought our family closer and I believe she saved our marriage. My husband totally took charge from the moment he found out about Sydnie’s condition and became a much better father from that moment on. Having my girls gave me the confidence and strength to believe in myself and stand up for myself. I am so much stronger now that I have them and after going through all of the turmoil with Sydnie, I am more aware of who I am as a person. I’ve found friends online and through a local support group that helps us stay grounded and offer support when other family and friends can’t.
Since having her second surgery, Sydnie has been doing well. She has suffered from Reflux since birth and has had a seizure that required tests and a visit to the hospital, but other than that, we are blessed to have no complications as of yet with her heart condition. We don’t know when or if she’ll need the third surgery. We take it day by day and know that each day is a blessing with our children.
These children deserve so much out of life. They’ve been through such traumatic experiences and are worthy of everything life has to offer. Those of us with children born with Congenital Heart Defects undergo so much stress and apprehension about what the future holds. Our lives are turned upside down and for those of us with other children, we have to find temporary homes with family and friends for them, while we care for to our sick child’s needs. When and if our child comes home from the hospital, we have piles and piles of medical bills to pay. Hospitals, doctors offices, collection agencies, and letter after letter consume our lives with demands to pay up or else. In a sense, we’ve been shattered… as a family and as individuals. We all experience it the same, but individually, we react and handle it differently.
For me, it’s like a robbery or a rape of my heart. Someone just reached in and tore my heart into a thousand pieces and I’m left with the task of finding, and then trying to piece it all back together. Of course, I’ll never get it back together exactly as it was before it was broken, so cracks and crevasses still remain.
This is such an important issue for everyone, not just for those of us who are already fighting in the trenches. Heart Defects account for more than 32,000 births in the
Sincerely,
http://trak.to/hearthugs
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