Amelias Heart
Donation protected
Anikka & I met at Stokely Playground, where we quickly bonded over our little boys. Asher and Wesley instantly became best friends, and so did we. We found we had a lot of things in common; from how we have similar parenting techniques, to our husbands both being from the same neighborhood and knowing each other. Our similarities then led to even deeper things, like how we both tragically lost our siblings around the same time, which led to years of darkness for us both. We later experienced a sense of purpose and happiness that we thought we may never feel again, the moment we held our babies for the first time.
Fast forward, I asked Anikka to be in my wedding. Our friendship was new, but our bond felt like it traveled back many lifetimes. Shortly after this, Anikka sent me the picture of her positive pregnancy test. I was so happy for her (but also annoyed because we were supposed to have our second together >:|). We soon decided that since Baby would be due two weeks prior to my wedding, it would be best she did not give herself that extra set of responsibilities.
I will never forget when I checked my phone during her 20 week scan, and opened a text that read:
"Something is wrong with the baby's heart."
Days turned into weeks of tests, waiting, tests, waiting, and finally it was confirmed that Amelia Grace had Tetralogy of Fallot and discontinuous pulmonary arteries.
Tetralogy of Fallot is a rare heart defect, where four different defects have to be present for TOF to be diagnosed. It includes a hole between the lower chambers of the heart, an obstruction from the heart to the lungs, the aorta laying over the hole in the lower chambers, and the muscle surrounding the lower right chamber of the heart becomes thickened.
Discontinuous pulmonary arteries, in summary, means that her left pulmonary artery was not in the right place, affecting her oxygenation. This caused pulmonary hypertension, which means too much blood went to the left lung and diminished blood flow to the right.
On Thursday, August 2nd 2018, Amelia Grace Rounbehler entered this world weighing 10 lbs 2 oz, 21.6 inches tall, at The Children's Hospital of Philadelphia. Amelia is a big, strong, beautiful baby girl who made sure that she came into this world ready to fight. The following Monday, Amelia had her first open heart surgery to address her discontinuous pulmonary arteries. She is still recovering, with some bumps in the road, but still resilient as ever!
Amelia will have her second open heart surgery at about 4 months of age to begin the repair of her heart.
Witnessing Anikka, Rocco, Asher, and the rest of their families cope the best they can during this EXTREMELY difficult time (to say the least) has been hard. What do you do when you have to watch your newborn baby endure such serious medical intervention? It truly is unnatural, but they are doing it, and that baby girl is SO lucky.
Needless to say, Anikka and Rocco are both missing copious amounts of work time. They are homeowners, and have Asher (age 2) to care for. Then we can factor in the medical bills, the cafeteria food from living at CHOP, and Anikka is also in Grad school for nursing where she has to hold a certain average to not pay out of pocket for the courses. I was in awe when I learned she had to take a test the day prior to Amelia's first surgery, in attempt to keep her grades high enough until this course is over.
As if the emotional and mental tragedy was not enough, then you have the underlying financial fears and pressures of keeping everything afloat, while missing work to be with your critical newborn.
That is what brings us here, I will be making a donation in lieu of wedding favors, and I want to give everyone else the option to donate as well.
Thank you so much for your time, and if you can not donate, please take a moment to say a prayer, or send positive vibes to Amelia and her family.
Fast forward, I asked Anikka to be in my wedding. Our friendship was new, but our bond felt like it traveled back many lifetimes. Shortly after this, Anikka sent me the picture of her positive pregnancy test. I was so happy for her (but also annoyed because we were supposed to have our second together >:|). We soon decided that since Baby would be due two weeks prior to my wedding, it would be best she did not give herself that extra set of responsibilities.
I will never forget when I checked my phone during her 20 week scan, and opened a text that read:
"Something is wrong with the baby's heart."
Days turned into weeks of tests, waiting, tests, waiting, and finally it was confirmed that Amelia Grace had Tetralogy of Fallot and discontinuous pulmonary arteries.
Tetralogy of Fallot is a rare heart defect, where four different defects have to be present for TOF to be diagnosed. It includes a hole between the lower chambers of the heart, an obstruction from the heart to the lungs, the aorta laying over the hole in the lower chambers, and the muscle surrounding the lower right chamber of the heart becomes thickened.
Discontinuous pulmonary arteries, in summary, means that her left pulmonary artery was not in the right place, affecting her oxygenation. This caused pulmonary hypertension, which means too much blood went to the left lung and diminished blood flow to the right.
On Thursday, August 2nd 2018, Amelia Grace Rounbehler entered this world weighing 10 lbs 2 oz, 21.6 inches tall, at The Children's Hospital of Philadelphia. Amelia is a big, strong, beautiful baby girl who made sure that she came into this world ready to fight. The following Monday, Amelia had her first open heart surgery to address her discontinuous pulmonary arteries. She is still recovering, with some bumps in the road, but still resilient as ever!
Amelia will have her second open heart surgery at about 4 months of age to begin the repair of her heart.
Witnessing Anikka, Rocco, Asher, and the rest of their families cope the best they can during this EXTREMELY difficult time (to say the least) has been hard. What do you do when you have to watch your newborn baby endure such serious medical intervention? It truly is unnatural, but they are doing it, and that baby girl is SO lucky.
Needless to say, Anikka and Rocco are both missing copious amounts of work time. They are homeowners, and have Asher (age 2) to care for. Then we can factor in the medical bills, the cafeteria food from living at CHOP, and Anikka is also in Grad school for nursing where she has to hold a certain average to not pay out of pocket for the courses. I was in awe when I learned she had to take a test the day prior to Amelia's first surgery, in attempt to keep her grades high enough until this course is over.
As if the emotional and mental tragedy was not enough, then you have the underlying financial fears and pressures of keeping everything afloat, while missing work to be with your critical newborn.
That is what brings us here, I will be making a donation in lieu of wedding favors, and I want to give everyone else the option to donate as well.
Thank you so much for your time, and if you can not donate, please take a moment to say a prayer, or send positive vibes to Amelia and her family.
Organizer
Careen Goldberg
Organizer
Philadelphia, PA