IMH Newsletter - June 2009

Aislinn & Johnna's story as told by their mom, Kelly Wood:

Our daughter Aislinn, now 5, was born March 15, 2004. She was immediately diagnosed with a heart defect. We were released from the hospital when she was 5 days old and went that very day to see a pediatric cardiologist. We learned that she had ASD and VSD. The holes were medium-sized and she was seen on a regular basis to monitor her condition. When she was 2 years old, we learned, after repeated visits, that the holes, which had still not closed, were causing her left ventricle to enlarge. It was decided that Aislinn would need to have open-heart surgery to patch the holes. On June 6, 2006, she had surgery at Rainbow Babies Hospital in Cleveland, Ohio. This was most stressful thing that my husband, John and I had ever gone through in our entire lives. We were so scared. We stayed with her the entire time in the hospital of course. Aislinn did great and the three of us went home after a week in the hospital. We never wanted to go through anything like that ever again. So, when I became pregnant again, we were advised to have neonatal testing done to ensure that our other baby would have no problems. We did so and were told that there were no heart defects detected. Our other daughter, Johnna Quinlan Wood was born on June 8, 2007. She was a healthy baby and Aislinn was so excited to have a baby sister. Throughout all of Johnna's well-child visits, she was healthy except that her weight was on the lower end of the growth chart. She was always healthy with the exception of an incident of bronchilitis in January of 2008. Also, she was delayed with some things such as rolling over & crawling and eventually even walking was a delay.

My husband and I were concerned about her low weight and the delays, so we made an appointment at our local health department's free pediatric orthopedic and neurology clinics. We were told that nothing was physically wrong with her legs by the orthopedic doctor. The neurologist, however, was very much concerned with her delays. She specialized in autism and even though Johnna was too young to really be diagnosed with this, the neurologist felt that additional lab work and screenings were necessary. Johnna's weight was very low and the neurologist was concerned with her constant grunting. She recommended testing to rule out cystic fibrosis by ordering a sweat chloride test. It was negative. She also recommended physical therapy weekly for her delayed walking and a pulmonary specialist consultation. Johnna went weekly to physical therapy for several months but still did not walk. We made an appointment with a pulmonary specialist for February 2009 but we never made it.

On January 19, 2009 Johnna developed a fever and appeared to be tugging at her ears. I figured it was probably an ear infection. (Johnna is the youngest of 5 children: sisters, Jordin (17) and Eva (14); brother, Luke (11) and of course Aislinn (5). Been there; done that with the ear infections.) On January 21st, I put Johnna in her crib and turned on the baby monitor in the nursery as usual. While I was in bed, I noticed that I could hear Johnna's labored breathing. The next morning, I called the pediatrician to make an appointment to have her seen because I was concerned that she had a respiratory infection or virus. Aislinn's preschool was passing around RSV and I was worried that perhaps Johnna had contracted that since Aislinn had what seemed like a slight cold.
January 22, 2009 was the most chaotic day of my life. Aislinn had leaped from the back of our couch earlier that week and a visit to the ER confirmed that she had a buckle fracture of her right wrist. She had an appointment to have a cast put on so I figured I would kill 2 birds with one stone. Johnna would also see the pediatrician who was located across the street from the ortho doctor who would cast Aislinn's arm.

We went to the pediatrician first that day. While there, we happened to see a Nurse Practitioner. I explained to her that Johnna seemed to be having some kind of congestion or breathing difficulty along with the fever. She looked tired, but otherwise, no other signs of breathing difficulty other than her shoulders were lifting while she breathed. An examination confirmed that her ears were indeed infected and the CNP decided to get a pulse ox reading. This was around 75-80; so she was given an aerosol breathing treatment. The CNP then repeated the pulse ox, which still was not as high as it should have been. She decided that Johnna most likely had a respiratory infection- bronchilitis with possible pneumonia. She felt that Johnna needed to be admitted to the hospital. My husband is a nurse at Alliance Community Hospital, which does not have an actual pediatric unit. John was at home, sleeping, because he was scheduled to work that night- his usual 7pm to 7am shift. I had to call him and wake him up to explain that I was going to drive Johnna to Aultman Hospital in Canton and that he needed to meet me at the ortho doctor's office so Aislinn could get her cast and that he had to get there ASAP so I could leave to take Johnna.

As soon as John arrived at Dr. Mungo's office, I left and drove to Canton with Johnna. Everything was so surreal that day. She was admitted and hours flew by. She was so sick looking; dehydration from all of the labored breathing is what I was told. The nurses couldn't get an IV started because she was now seriously dehydrated. A chest x-ray was done to rule out pneumonia. She was given antibiotics IM. Another pediatrician noticed that her chest x-ray films looked unusual.

After that the hours spiraled into dark confusion. I was told that her heart looked enlarged. An echo was ordered and the next thing I knew, I was being told that she was in heart failure. I didn't understand why any of this was happening. I called family and began to cry. We had already experienced heart problems with one child and I couldn't believe that this was happening again.

We were told that they were going to transfer Johnna to University Hospitals/ Rainbow Babies in Cleveland by helicopter. It was around 10-11 o'clock at night. The flight nurses were able to start an IV and I sat upfront in the helicopter clutching a stuffed bunny that was given to Johnna at Aultman hospital. We were in Cleveland within 18 minutes and Johnna was admitted to the PICU.

After hours of chest x-rays, echoes, and needle sticks all night, Johnna finally fell asleep. The next morning, I was told that Johnna actually had a congenital heart defect that was never detected, TAPVR. The doctors explained to me how her pulmonary veins were on the wrong side of her heart and a hole in her heart had allowed some blood to flow. Her good blood was being mixed with the bad blood. Her grunting was due to blood in her lungs and her delayed walking was due to this too; she was too tired to walk. I could NOT believe what I was hearing. I thought that the neonatal testing was to rule out anything like this. My baby was 19months old and had lived with this condition undetected! The pulmonary specialist probably would have been the one to find this had she not gotten sick. My husband drove to Cleveland and family helped back home with the other kids. Johnna was kept in the PICU until the day of her surgery on January 29, 2009. They did not want to risk her getting any type of infection before the surgery.

On Thursday, January 29th, my husband and I once again placed one of the dearest things in our lives in the hands of total strangers. I cry even now thinking of this. To them, this was just another open-heart surgery. To us, this was our baby's life in someone's hands. Once again, we sat through one of the longest mornings in existence. Surreal. We were told that it was hard to believe that she was this old and no one had detected this. No one knew what they were looking for, even knowing the history of her older sister. We sat rethinking the last 19 months. What could we have done differently to have realized this earlier.

After hours and hours and hours of waiting, we were finally permitted into the PICU to see our darling little angel. She did great we were told. Some of the doctors and nurses were calling her "Wonder Woman."

She did so well, that she was able to be disconnected from the plethora of trappings, tubes and wires. She was transferred to another floor the second evening after her surgery. She never stopped smiling the entire time. My husband and I made a daily video diary of her ordeal, just as we had done when Aislinn had her surgery three years before.

Monday, February 2, 2009, we brought Johnna home. Twelve days of our lives had gone by in a sickening blur. Johnna is doing great now. She started to walk on February 16th and has gained the weight that she should have months ago. Our family was so greatful to God to have gotten through this once again. We feel for anyone who has ever had to go through something like this and our two littlest daughters have matching "boo boos" that they both point to occasionally. This is something that they will share and I guess in a strange way that it is kind of neat that they will each have someone to relate to with their scars...and who better than your own sister.

While we were in the hospital with Johnna, we received an It's My Heart comfort bag. The bag contained a book about CHD that is wonderful. We greatly appreciate receiving the bag and I hope to donate as soon as we are able to pay off most of our medical bills. I subsribed to the newsletter and hope to help in other ways as well.

We never thought this could happen to us and especially not twice. Both of our girls continue to see a pediatric cardiologist on a regular basis and we consider ourselves to be very blessed for having two of the biggest lil survivors!

Do you have a heart journey to share? E-mail newsletter@itsmyheart.org for more details.