Oct 27, 2019 Latest post:
Jul 16, 2020
Here is Kallan’s (condensed) story from the beginning. If you have read my entries in the past you will know I am anything but brief. I apologize in advance for that. Kallan was born on June 19, 2010. When we were getting ready to be discharged two days later, the doctor on the floor checked me out and I was discharged. We were bags packed and ready to go, just waiting for the pediatrician on duty to sign Kallan’s discharge papers. He came in and put the stethoscope to her chest. Then off-handedly said “oh they must have mentioned this little heart murmur.” We shook our heads no. But I was not too concerned. Many kids are born with heart murmurs and me, in my “advanced maternal age” coupled with gestational diabetes and Bell’s Palsy, has been very closely monitored and had a ridiculous number of ultrasounds. I knew it was nothing. The doctor said they were just going to take her and do a couple of tests. We began to wait. It took much longer than expected. And when they came back, they asked us to sit down. It was then that this journey began. They handed us a paper and told us that Kallan had Tetralogy of Fallot with Pulmonary Atresia. It is a congenital heart defect that requires surgical repair and a lifetime of maintenance and additional surgeries.
We tried to digest this as they wheeled Kallan by us for a moment in an incubator, intubated and heading to the ambulance to take her to Children’s Hospital in Boston. David and I were in a daze as we followed the ambulance, not at the time knowing what we were going to arrive to. We called our families to tell them we were not coming home.
This baby girl did not have a name decided at birth. But the second day, before we knew about her heart, we decided on the name Kallan, which is Gaelic for “powerful in battle”. The next day her battle began.
She had a cardiac catheterization during that first hospital stay. And then we were fortunate enough to have 3 months for her to gain a little weight before her open heart surgery. Kallan had her full repair in October and has since had (I have to admit I can’t recall) how many more catheterizations (6 or 7?), as well as a hip surgery due to a staph infection during one of those caths.
We are very fortunate in that Kallan has the best brother and sister, the best grandparents, the best Aunts, Uncles, Cousins and an army of friends who support her.
She has been able to lead a very normal, exciting life when not in the hospital. She will need a future open heart surgery to replace her conduit. We are thankful for everyone’s past and future emotional support as we walk with our precious girl through her story. It always gets us through whatever we have facing us. Xoxo We love you Kallan!