Little Miss Willow's Heart Journey
At 36weeks into my pregnancy I went into labor, and delivered my second daughter, Willow. She weighed 4lbs 11oz, and further examination revealed that she was most likely born at 34 weeks gestation (not 36 as estimated). Willow’s bilirubin levels were elevated and required her to remain in the hospital for five days. She spent 24 hours under the bili lights and had blood drawn daily, often multiple times, during those five days. After the 5th day her numbers finally went down far enough that we could go home. 
While we were home her bilirubin numbers began to rise once again. At one point her bilirubin levels rose to a level where the doctors were considering a blood transfusion. By the time she was 2.5 weeks old blood had been drawn a total of 14 times. Each time they had to draw blood it broke my heart seeing my tiny little peanut cry, not understanding why someone would hurt her. With additional light and sun therapy, eventually her bilirubin levels improved and she was not required to see the doctor except for the routine well child checks.
Over the next month and a half Willow appeared to be doing great! It was at her two month well child check the doctor discovered that she had a heart murmur. Plenty of people have heart murmurs without complications or limitations, and we hoped this would be the case with Willow. As a precaution her pediatrician referred her to a pediatric cardiologist, and she was sent for a chest x-ray the same day.
The chest x-ray was heart wrenching to watch. It involved Willow being strapped inside a clear plastic tube with her arms stretched above her head and her tiny face poking threw a hole cut in the front. She did not appreciate the cold x-ray tube and screamed frantically while strapped inside. All I could do was stand back and watch. Like I said, heart wrenching.
Later the physician called to inform us that the x-ray revealed Willow was within acceptable ranges, and would not need to be seen until her 3 month check up. We hoped this was good news, and that her murmur would correct itself as she grew. We were wrong.
A week passed with no issues. Then all of a sudden she started crying uncontrollably for hours on end. Each day for longer periods of time. At one point she cried for 8 hours straight not able to be consoled by myself, the nurses or anyone. We were told that it was most likely acid re-flux and to request a prescription of an acid reducer. We followed the suggestion and made a follow up appointment with her pediatrician.
The follow-up appointment revealed that it was not only stomach acid that was bothering Willow, but her murmur had quickly progressed from a low/moderate level to a critical level. She was immediately sent to the pediatric cardiologist for an echocardiogram. During the echocardiogram she was diagnosed with progressive Pulmonary Valve Stenosis along with Atrial Septal Defect (PVS/ASD). We were informed that her heart had become enlarged due to the PVS/ASD. Appointments on the doctor’s surgical schedule were shifted to make room for Willow’s cardiac catheterization. 3-month-old Willow was admitted into the hospital and placed under general anesthesia. The procedure was scheduled to take 2.5 hours. Complications arose during the procedure, and it took an additional hour for the catheterization to be completed. She was sedated for an additional 4hrs after the procedure and remained hospitalized for monitoring for a total of 36 hours.
Willow, now 3.5-months-old, averages two medical appointments per week, and is scheduled for an echocardiogram to follow up on the progress made by the catheterization. Because of the progressive nature of her PVS, she will continue to be closely monitored and will receive additional echocardiograms for at least the next 3 years.
The ASD, hole in her heart, is supstantial and will not close on it's own. Because it increases the amount of blood that flows through the lungs, over time it can damage the blood vessels in the lungs. Damage to the blood vessels in the lungs can lead to stroke or heart failure. Willow will require at least one additional surgical proceedure to close this. Her cardiologist would like to wait until she is bigger and is closer to 3 years of age before she has it surgically closed. After which he is hopeful that her heart will reduce in size and recover from the stress of having to work so hard. She will also need additional procedures to address the issues that, once again, progress to critical. After numerous proceedures/surgeries over the next several years, we are hopeful that her heart will stabalize. 
Our family has health insurance, however the co-pays, medical tests, cost of prescriptions, etc. add up. I (Kelly/mom) am unable to work during this time due to the amount of care Willow requires. Jason (dad) has been unable to find a job in state. He feels that it is important to stay together as a family unit for support at this time. Once Willow is more stable, he will be traveling out of state for work for a minimum of 6 months at a time. In addition we have a three year old daughter who also needs attention, and to have a sense of normalcy amid the chaos. This has been a trying time for our family but we are trying our best to remain optimistic.
Any donations are greatly appreciated and will be used to help cover the cost of Willow’s ongoing medical expenses. Thank you for considering our family, this means more than you will ever know.
~Kelly, Jason, and the girls.