Nashua, New Hampshire
My pregnancy went fairly well, outside of morning sickness, more so than my two sons. From the fourth month onward, I would request an ultrasound but was not considered at risk for anything. Finally, in my eighth month, I asked my doctor how she knew my baby was alright. You see, I never had the tests done in the beginning of my pregnancy, because I felt no need for it. The doctor asked me if I wanted it done, but she said the purpose was to detect chromosomal abnormalities, giving you the choice to abort.
Because of my husband's and my religious beliefs, this was totally out of the question. But for some strange reason, in my eighth month, I asked her "How do I know my baby doesn't have something like Down Syndrome?," never suspecting this to be a possibility. She finally agreed to do the test to ease my mind. I had the ultrasound and was thrilled to find I was finally going to have my little girl. They couldn't see the formation of the baby's heart, so they sent us to Boston for clearer pictures. That was December 21, 1998, the day I felt my world crumbling around me.
First they found two heart defects-- a complete a/v canal defect AND tetrology of Fallot, a rare combination. The doctor doing the test told us her chances of survival were very slim, and if she survived birth would require immediate surgery, would not breathe on her own, and I couldn't hold her. And on top of all of that, she, with her wonderful compassion (sarcastically), told us, "Oh, and she has a 70% chance of having Down Syndrome. Here I am looking at this beautiful baby's face on the screen, crying for the girl I had wanted for so long, and being told she may never even make it. After a very long and emotional month, Sierra arrived on Jan. 22, 1999, weighing 7lbs. 1oz. The first thing I said was, "She's alive, she's alive!!!" Well let me tell you, even with all the specialists around her, you could see the fight in her eyes. She was going to prove them all wrong! After holding her for a very short time, she was whisked away to the NICU. I became very sick after her birth, from medication that made my blood pressure go down too much. I was not well enough to see her for a few hours, but my husband stayed with her. She breathed on her own, did not need immediate surgery, and conquered her first battle. After 4 days in the NICU, she came to stay with me till we went home two days later.
She was signed up for EIP at 9 days of age, and after a very scary few months, underwent her first surgery at 4 months, weighing in at a mere 10 lbs. She was being fed expressed milk. Because of her heart, she didn't have the strength to nurse. Gaining weight was difficult, but she went through a very difficult surgery and after an amazing 6 days, went home. It was the longest month ever (she had been hospitalized 3 times for heart issues). She continues to struggle to eat and grow, but is now a year old, weighs 15 lbs. and is the love of my life. She is a true fighter and refuses to give up. I'm glad we found out about her challenges beforehand. This gave us time to read all we could about the heart and Mosaic Downs. We have concentrated so much on her heart issues that her Downs doesn't seem too significant. She has the desire to please and the drive to try anything, but not the stamina--because of the heart still not being completely functional. But we know, she will achieve a great deal and continue to amaze us and be adored by her big brothers. We are so thankful to God for our family and friends in our congregation, all of which would not be possible to deal with, without them. It's a long, emotional road, but we would do anything for our little miracle!
First they found two heart defects-- a complete a/v canal defect AND tetrology of Fallot, a rare combination. The doctor doing the test told us her chances of survival were very slim, and if she survived birth would require immediate surgery, would not breathe on her own, and I couldn't hold her. And on top of all of that, she, with her wonderful compassion (sarcastically), told us, "Oh, and she has a 70% chance of having Down Syndrome. Here I am looking at this beautiful baby's face on the screen, crying for the girl I had wanted for so long, and being told she may never even make it. After a very long and emotional month, Sierra arrived on Jan. 22, 1999, weighing 7lbs. 1oz. The first thing I said was, "She's alive, she's alive!!!" Well let me tell you, even with all the specialists around her, you could see the fight in her eyes. She was going to prove them all wrong! After holding her for a very short time, she was whisked away to the NICU. I became very sick after her birth, from medication that made my blood pressure go down too much. I was not well enough to see her for a few hours, but my husband stayed with her. She breathed on her own, did not need immediate surgery, and conquered her first battle. After 4 days in the NICU, she came to stay with me till we went home two days later.
She was signed up for EIP at 9 days of age, and after a very scary few months, underwent her first surgery at 4 months, weighing in at a mere 10 lbs. She was being fed expressed milk. Because of her heart, she didn't have the strength to nurse. Gaining weight was difficult, but she went through a very difficult surgery and after an amazing 6 days, went home. It was the longest month ever (she had been hospitalized 3 times for heart issues). She continues to struggle to eat and grow, but is now a year old, weighs 15 lbs. and is the love of my life. She is a true fighter and refuses to give up. I'm glad we found out about her challenges beforehand. This gave us time to read all we could about the heart and Mosaic Downs. We have concentrated so much on her heart issues that her Downs doesn't seem too significant. She has the desire to please and the drive to try anything, but not the stamina--because of the heart still not being completely functional. But we know, she will achieve a great deal and continue to amaze us and be adored by her big brothers. We are so thankful to God for our family and friends in our congregation, all of which would not be possible to deal with, without them. It's a long, emotional road, but we would do anything for our little miracle!
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