Saturday, July 22, 2006

McCorvey family heart story submitted by heart mom Carlie McCorvey.

The day that I decided to make my entrance into this world was September 4, 2002. I was very excited to see my Mommy and Daddy and especially my big Brother, Zachariah, whose voice I’d been hearing for nine months! I was so excited to meet everyone that I almost came too quickly. I was born only one hour after my Mom and Dad checked into the hospital. As soon as I was born I was rushed to the table to suction me out because the Dr. saw meconium in the water and didn’t want me to inhale it. So, the nurses suctioned me and watched me for a while. I also had a very fast heart rate. The nurse said that was probably due to inhaling something, but my mama felt like something was wrong.

When they finally let my mama hold me she commented on how dark red I was. The nurses said that was just a newborn color. My mom was a little concerned because she said my brother was not that color when he was a newborn. Even though my Mom thought I was a strange color she trusted that the nurses must know best and she spent that first whole night holding me and staring at me. I was very tired from my incredible journey, so I slept the whole time!

The next morning the nurse came to get me so that the doctor could come and check me out. My Daddy came with me to the nursery where Dr. Lattin did a routine exam on me. He was almost done checking me out when I got mad at him and starting crying. When I got mad I turned purple! Dr. Lattin listened to my heart and heard a murmur. He thought this might have something to do with my new shade of magenta. He then called for a neonatologist to come and listen. Dr. Rajani then came and after only listening to my heart for a few seconds he called Children’s Hospital Central California and told them that I was going to be on my way there.

Dr. Lattin came into my Mom’s room and told her that he had heard a heart murmur and that Dr. Rajani was sending me to Valley Children’s. She was in shock. At first she thought he must have been joking. Then my Dad came in and told my Mom what the doctor had told him. I was going to go to Valley Children’s right away, because something was wrong with my heart. The next few hours were a whirl wind. The doctor and nurses put me in an incubator, put a tube down my throat, an I.V. in my arm and started me on some medication. Just 45 minutes later the ambulance was there to pick me up to take me to Children’s Hospital Central California. The ambulance team wheeled my incubator into my mama’s room to say goodbye. My big brother and my grandma had just arrived (they did not know that I was sick), so they got to see me and tell me goodbye. The ambulance team took a Polaroid picture of me to leave with my mama and daddy and we left. My mama says that those next few days were the scariest and worst days of her entire life.

My Mama’s point of view
After finding out that my sweet new baby girl was very sick I was all of a sudden left in the hospital with no baby. Several visitors came to see the new baby only to find heart broken parents in the midst of an emotional tornado. Two hours after leaving for CHCC (Children’s Hospital Central California), Dr. Caton, the cardiologist on call, called me to let me know about Makenna’s condition. I cannot remember the exact words or terms that he used. All I remember is my sense of dread. My world was spinning out of control and nothing was making sense. It was so devastating that I couldn’t even comprehend what was going on. I had a pen in my hand to write notes as he spoke, but all I could write was blood vessels and hospital. All I knew was that I had to get discharged so that I could get to the hospital and talk with the doctors about a surgery that my daughter needed. I couldn’t believe what was happening. Only 15 hours earlier I was elated over the birth of our second perfect baby. Now my whole world was crashing in. I felt a panic and fear that I had never known.

It seemed to take forever to get discharged. It seemed as if the nurses were ignoring me. They only came in to ask questions like, “wasn’t the baby fine earlier?” It seemed as if they knew that they had not listened to me when I worried about her coloring and they were now trying to cover themselves. And it took my doctor several phone calls and several hours to come and discharge me. By the time we got to the hospital the doctors had done many tests and monitored Makenna enough to understand what was going on with her heart. When we first got to the NICU we saw our baby hooked up to lots of machines. It was heartbreaking. We were afraid to touch her. It was all so overwhelming that I got dizzy and threw up. It wasn’t my finest moment. I’m sure the pain killers I was on had something to do with it. We then proceeded to have conferences with three different doctors; the neonatologist, cardiologist and cardio-thoracic surgeon. We were bombarded with lots of medical terms that we didn’t understand and were given diagrams of our daughter’s special heart. I remember thinking that I wish I had paid better attention in biology class! In the end we were told that our daughter needed surgery (BT Shunt and patch augmentation of the pulmonary artery, PDA closure) first thing in the morning. We were scared to death.

It’s interesting how you can love someone so much that you only met (in person) a few hours ago; and how you would gladly take their place if you could. I have never felt so helpless in my life. I couldn’t stop crying that entire night. Somehow I pulled it together enough to get up early the next morning so that my husband and I could go and see Makenna before her surgery. We only got to see her for a few minutes before they wheeled her down the long hallway and past the large swinging doors into the operating room. The doctors then held not only her life, but ours, in their hands. We waited for 8 hours to see our girl again. When she came out of surgery she was on a ventilator and hooked up to lots and lots of machines and medications. I thought that it would be scary to see her, but it was awesome. She looked great to us. She was our sweet, beautiful baby girl and we were ecstatic to see her.

Makenna’s Point of View
When I was only 36 hours old I had my first heart surgery. All of my doctors and nurses took good care of me and I recovered well. My mommy and daddy stayed with me everyday and my big brother Zachariah came to visit everyday. I did my best and was a strong girl. My heart was doing well, but I had a hard time learning how to eat. I was still very tired and not real interested in eating. I had a tube in my nose that helped to feed me my mama’s milk when I couldn’t finish it by mouth. I hated that tube! I had to stay in the hospital for about a month. It was great to go home and be with my family. I loved being held all the time and I enjoyed the entertainment that my big brother loved to provide.

Slowly but surely I began to grow! When I was 3 months old I had to go back to the hospital for a heart catheterization. After that my oxygen saturations were in the high 60’s, so it was determined that I needed my next surgery soon. After a few delays I had my second surgery (Bi-directional Glenn) at 5 months old. My doctor said that I was a super star patient! I only had to stay in the hospital for 5 days. After that surgery I felt much better. My oxygen saturations went up into the 80’s and that helped me feel better. I had more energy than before. Soon after I got home I started to roll from side to side. I started to grow and grow! My mama says that I was the sweetest baby! We didn’t get to go out much that first year. My parents had to keep me healthy because I get sick very easily. We mostly stayed home, but my family and I had a wonderful year together.

When I turned one year old we had a huge celebration! My family gave me a wonderful party to celebrate my first year. All of my friends and family came and my cardiologist, Dr. Caton came too! We had a carnival theme with bounce house, games, face painting and snow cones! Since Children’s Hosptial Central California had done so much for me and helped to give me a whole year with my family, I decided to give them my birthday presents. Everyone that came to the party gave donations to the hospital in my honor. My family and I were happy to give a large donation to the hospital to help all of the kids who have heart surgery. This party was also the last public appearance that I made before my third surgery.

I had my third surgery (Rastelli) when I was 14 months old. I was growing good, doing well and staying healthy, so it was the right time for an open heart surgery. I even took my very first step a few days before surgery! This surgery was my longest at 10 hours long. Because I have had two other surgeries I had a lot of scar tissue, so it took several hours to just open up my chest. My recovery was thankfully uneventful as far as recovery from open heart surgery goes. I was in a lot of pain and I missed my family terribly when they couldn’t be around. I also hated not being held by my mama. However, I was lucky in that I didn’t have any set backs and I was able to be home within a week!

After this third surgery I felt even better than ever!! This was the first time ever that my oxygen level was considered normal. I now had enough energy to be the DIVA PRINCESS that I always was on the inside! I caught up on most of my gross motor skills. I started walking (15 months) and talking and playing with my brother. I am now almost three years old! I love playing barbies, dolls and dress-up. I am very much a girly girl. I especially love getting into my mama’s make-up drawer. I also love playing with my brother and sister. We are best friends!

I do have more heart surgery in my future. We are not sure when my next surgery will be. I go to the cardiologist, Dr. Caton, every 6 months for now to monitor how my heart is doing. I don’t worry about surgery though! I have a great life and I am too busy watching butterflies and putting on lipstick and singing songs to worry about heart surgery!

Some thoughts from my parents:
I can’t possibly do my daughter’s story justice. She has been through more in her short life than any one person should ever go through in a life time. It is incredibly hard to cram several years of doctor’s visits, hospital stays, surgery and everything else that everyday life brings into a few pages. In between these surgeries she had countless illnesses (due in part to a weakened immune system), many, many doctor’s appointments, home health visits, blood draws and check-ups. Makenna and her brother Zachariah were both isolated in an attempt to keep Makenna healthy during her first year and half while she was so fragile. They have both sacrificed play dates, trips to the store, going to see Santa at the Mall, taking pictures at the mall, McDonald’s play place and many, many other things that kids their age love to do.

I hope that you have learned a little bit more about Makenna and what a hero she is. We also hope to raise awareness about congenital heart defects which are the number one birth defect in the U.S. We hope and pray that with research one day CHD’s can be prevented and that research will provide Makenna with a chance to have a more permanent “fix” to her problems and less surgeries over her lifetime.

This is also a story about love. Makenna has taught me how to love someone unconditionally and intensely. Sometimes we go about our lives assuming that we have many, many more days and years to spend with the ones we love. I have learned through this experience that we cannot take anything for granted. Each and every day, hour and breath is a blessing. When you love someone with every fiber of your being and that person comes very close to death, you gain a profound sense of respect for life. I have also learned that each and every person has a significant purpose in life. Each and every life, no matter how long or short, is very significant. Take advantage of each day and don’t waste a minute of your day on meaningless things. Always remember how blessed you really are. We sure do.

I am in awe of my kids and they have taught me many important life lessons. I feel privileged to be their mom. I now live a better life and am a better person for having the honor to know these awesome little people. We now also have a new baby, Caton. Yes, she was named in honor of Makenna’s Cardiologist, Dr. John Caton. Along with Dr. MacDonald and many others at CHCC, he has given us hope. For that the least we can do is name our precious baby after him! So, in closing…thank you to Zachariah, Makenna and Caton for being the best gifts God could ever give me.

1 comment:

Bea Almaguer said...

What a touching and heartwarming story of the difficulties your family face with Makenna's heart defect. I'm so glad she is doing so well.

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