(Written for June 2002 )
Alyssa was born November 9th, 1995. She was ten days late and then came out
in a hurry. Alyssa was beautiful, a normal vaginal birth. My husband Tom
was the best coach all the way through and even cut the cord. The midwife
gave her to me right away to breastfeed but she was too sleepy. The
pediatrician gave her a clean bill of health. The next morning I was
packing up to go home and the same ped. came in and sat down. My heart
sank. I heard "murmur" and "hole" and "cardiologist" and I was thinking
surely he must be in the wrong room, please get up and move on down the
hall...I even felt sad for the other mother he was supposed to be telling
this to...but he didn't leave, just gave me a box of tissues and his phone
number. I couldn't bear to tell Tom about his baby girl. I called my mom
instead and we cried together on the phone and then Tom came and took it
really well. We brought Alyssa home on a Friday with an appt. for Monday
morning. I will never forget that weekend. We held her the entire time and
neither one of us slept a wink. The pc told us she had a moderate size vsd
and thankfully no other complications. At two months old she began to tire
while feeding and sweat terribly and she could only sleep sitting up in the
car seat. We took many car rides with our baby! The pc started her on
Lasix and she did really well and grew better than expected. At the age of
two we were told this hole would never be a problem. Alyssa was a wild
toddler, alway running and she would sweat so much but we weren't concerned
because she was so active and growing. Then from age four to five she
didn't gain any weight or height and we began to worry. The pc said
everything was fine. We went for a second opinion and turned out everything
was not fine. She was overworking her heart and the hole was bigger than we
had been told and should be closed. We then found out that there is
currently no good surgical option to close a muscular defect like Alyssa's.
Our new pc (the wonderful Dr. Levchuck) sent us to Boston Children's
Hospital to see the famous Dr. Lock for a device closure. This procedure is
done on atrial septal defects all the time with alot of success but for
vsd's it is still in the trial stages. Dr. Lock decided that because the
pressures in her heart were not as bad as they feared he would wait on the
device and give the hole another chance to close. At the time Tom and I
were pretty shocked by this, we had spent so much time preparing ourselves
and Alyssa and just wanted this all to be over. We felt like we went to see
the wizard and came home without a new heart! Today I am so very grateful
for his decision because Alyssa is growing so well and she is swimming and
playing tee ball and having a great time with her Brownie troop. She loves
science and nature, especially butterflies. She still tires out very easily
and suffers from alot of respiratory infections but hopefully she will
outgrow these problems. Alyssa is a wonderful big sister to her four year
old brother Tommy. She is a great student and has alot of friends. For the
last six and a half years she has been the light of my life and has taught
me so much about strength and love. Thanks for listening to my story. Jen
Mayer
Copyright(c)2002 - Jen
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