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"Our baby Celine is our second child...
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When I became pregnant with her, her brother was only 5 months old. This caused me a bit of stress, since I was still adjusting to a new baby, and the idea of another one was overwhelming. Maybe because I was preoccupied with my own feelings instead of this new little one on the way, I was not really enthusiastic about the Ob visits, the ultrasounds, shopping for baby things, etc. All of this changed at our 22 wk ultrasound session. Suddenly, the baby became the center of my universe.
At that appointment, we learned that our baby had serious structural problems with her heart. The Ob told us that the sonographer couldn't find half of our baby's heart. She said the condition she thought our baby had, HLHS (hypo-plastic left heart syndrome), was "incompatible with life". I asked about fetal surgery. I asked if the baby was going to be okay for the rest of the pregnancy. I remember feeling simply helpless. The Ob told us that we needed to have a level II ultrasound - but not to expect the diagnosis to change, since the high-risk ob's used the same sonographer her office used. |
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The high-risk Ob confirmed the diagnosis. We were offered termination, comfort care until the baby died after birth, or we could be directed to a fetal cardiologist to have our baby's heart assessed for the possibility of surgeries and/or transplant. Well, we weren't going to terminate. After some thought and research, we opted for the appointment with the cardiologist. She was a wonderful dr, full of hope. She spoke and behaved as though she wanted our baby to live. We believed that she would find a way to help us. We had hope again. She gave our baby a new diagnosis, HRHS (hypo-plastic right heart syndrome). The syndrome, in our case, was a collection of seven serious heart defects; hypo-plastic right ventricle, coarctation of the aorta, Ebstein's anomaly, congenitally corrected L-Transposition of the Great Arteries, and 3 holes, both asd and vsd. To quote the words of a senior pediatric cardiologist, our baby had a "seriously screwed up heart!" |
Well, the diagnosis was easier to take this time around because we had a plan. Soon after birth, our baby would have the first of three open heart surgeries that would allow her heart to function with only one working ventricle. The first of these surgeries, the Norwood, is the most difficult and dangerous, but when babies survive this first surgical reconstruction, the survival rate goes up. We had a game plan, we had a wonderful team, we had hope, and we had faith in God. Now we simply had to wait for our little miracle to come on the scene.
She arrived October 2, 2001, three weeks early. Because she was born on the feast day of the Guardian Angels, we added the name "Angelica" to the name we chose, Celine Marie. She was a big girl at 8lbs, but she was gradually turning blue, or "cyanotic". At six days old she had the Norwood and recovered wonderfully. She was able to come home on her due date, October 20th, without a feeding tube or oxygen! |
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In June of 2002, Celine had the second of the three surgeries. Once again, her recovery was phenomenal! She was in the hospital exactly one week. This second surgery, the Glenn, has really improved her circulation and appetite. She is making great strides in growth and development. We are extremely proud of her and so are her doctors! At this time we are having Celine tested for a genetic condition called diGeorge syndrome, also known as VCFS (velo-facial-cranial syndrome). This condition is caused by a small deletion on the 22nd chromosome. The symptoms vary widely and often, children aren't diagnosed until they are school-age because it involves some specific learning disabilities. Celine's delays do not seem to be significant at this point and may only be due to having had two surgeries.
We aren't at the end of our journey. Celine will have another surgery in about a year. She may need some special therapies to help her speech and physical development. All the same, we are so proud of and pleased with our little girl. She is still the center of my universe (as is my 2 year old son) -- and I wouldn't have it any other way! |
Sincerely,
Monica (Celine's mom) |
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