Hi Friends,
I just want you to know that our baby indeed has Down syndrome. We will know the full spectrum of any other chromosomal issues and more specifics about our daughter's heart defect in the next two weeks. According to the doctor, they think the heart defect is significant. It is even possible the the baby will not make it to birth and could die in my womb. Only God knows the condition of our little girl. If she were to only be able to live a short life and have one of suffering with multiple heart surgeries, I have asked the Lord to please be merciful and to take our daughter home to be whole and new with Him. We can not bear to see our daughter suffer. I am sure that is why God had to turn His back when Jesus was on the cross. He could not bear to see him suffer in His innocence.
I will keep you all in the loop. For now, we just need some time to sit and process this. Whether I respond back or not, please know I am reading EVERY one of your emails and appreciate getting them. Mostly, I would like you pray for us... HARD! We can only get through this with God's strength and your love and support. This is going to be such a hard road- and right now it feels too overwhelming to get through. I don't feel strong enough to cope with this. I do not have the faith right now that "God will give us what we need when we need it." I know this is not too big for God- but it just feels too big for us.
Please just pray for God's Will be done. For strength. For the doctor who will do our ultrasound in a week or two- that he will be able to get a clear picture of the exact heart issue. For sleep- we are running on fumes. And for anything else you can think of. Just please pray for us.
Love,
Val, Bob, and Mattie
Wednesday, June 29, 2011
Friday, June 24, 2011
Some possible bad news...
Dear Friends,
Here I am 7 months later writing a similar email about our next baby. Two days ago I went in to hear the heartbeat of the baby I am carrying (I am 16 weeks pregnant.) At that visit, I got the results back from my 2nd trimester AFP blood test and it came back that the baby had a 1 in 3 chance of having Down's Syndrome. My last baby had a 1 in 3 chance of having trisomy 18 and ended up not having it but died anyway of some other cause that is unknown. So I was definitely shocked by this news. I couldn't believe that this baby could also be having "issues." 1 in 3 is a high risk factor.
So today, Friday, I went in to Obstetrix (a special office that deals with high risk pregnancies) to get an in depth ultrasound and an amniocentesis. I was optimistic that the ultrasound would give encouraging results and that it would point to the baby being okay. That was not the case. It turns out that the doctor suspects a major heart defect. Children with Down's can often have heart defects. So the heart defect in line with my blood test looks highly suspicious of the baby having DS. On top of that, babies with heart defects often have more severe cases of DS. It means that I will have to see a pediatric cardiologist and deliver at Stanford. (I should be thankful to live in an area with top medical facilities.) The baby will most likely have to have heart surgery before her 1st birthday and maybe multiple heart surgeries. This is a worst-case scenario. We don't know ANYTHING for SURE until the test comes back about Down's. We got the FISH test that tests for 3 chromosome abnormalities (13, 18, and 21) and that test is a rush test- it gives you results in 2-3 days. So by Tuesday, we should know for sure if the baby has DS (DS is when you have three 21st chromosomes- called trisomy 21.)
It is devastating to say the least. I can not tell you how heartbroken my heart is. I feel so conflicted inside about my feelings of sadness, anger, etc. I know that people with DS are wonderful people! It is just looking at the rest of my life and it looking completely different than ever expected... being a parent of a child is for a lifetime, but not to the extent of being a parent of a special needs child. I think about the impact on Bob, Mattie, and our life as a family. Not to mention the costs of having a child that may need multiple heart surgeries and all sorts of medical attention. My head is swirling. My dreams of what my family would look like have been shattered. After 3 years of struggling with infertility and a 2nd trimester miscarriage I don't "understand" why we couldn't have a healthy kid. I feel like we've been through enough already. It makes me very grateful, however, for my absolutely beautiful little girl, Mattie. It makes me realize how miraculous she is!
I have no idea how to ask you to pray- but just to pray. I will need your prayers, love, and friendship all the more! I feel like I have aged 10 years in the past 2 days. My heart weighs so heavy. And as soon as I know definitive results, I will email you all back.
I love you all and that is why I want to include you in my process. It's going to be a long one. Thank you for letting me be transparent with you. Emailing you all is helpful for me in my processing as well. I know that God can give me what I need... but I just don't know how we're going to do it! It just seems overwhelming.
Thank you for your love and prayers, (we need lots of each right now)
Val, Bob, and Mattie
Here I am 7 months later writing a similar email about our next baby. Two days ago I went in to hear the heartbeat of the baby I am carrying (I am 16 weeks pregnant.) At that visit, I got the results back from my 2nd trimester AFP blood test and it came back that the baby had a 1 in 3 chance of having Down's Syndrome. My last baby had a 1 in 3 chance of having trisomy 18 and ended up not having it but died anyway of some other cause that is unknown. So I was definitely shocked by this news. I couldn't believe that this baby could also be having "issues." 1 in 3 is a high risk factor.
So today, Friday, I went in to Obstetrix (a special office that deals with high risk pregnancies) to get an in depth ultrasound and an amniocentesis. I was optimistic that the ultrasound would give encouraging results and that it would point to the baby being okay. That was not the case. It turns out that the doctor suspects a major heart defect. Children with Down's can often have heart defects. So the heart defect in line with my blood test looks highly suspicious of the baby having DS. On top of that, babies with heart defects often have more severe cases of DS. It means that I will have to see a pediatric cardiologist and deliver at Stanford. (I should be thankful to live in an area with top medical facilities.) The baby will most likely have to have heart surgery before her 1st birthday and maybe multiple heart surgeries. This is a worst-case scenario. We don't know ANYTHING for SURE until the test comes back about Down's. We got the FISH test that tests for 3 chromosome abnormalities (13, 18, and 21) and that test is a rush test- it gives you results in 2-3 days. So by Tuesday, we should know for sure if the baby has DS (DS is when you have three 21st chromosomes- called trisomy 21.)
It is devastating to say the least. I can not tell you how heartbroken my heart is. I feel so conflicted inside about my feelings of sadness, anger, etc. I know that people with DS are wonderful people! It is just looking at the rest of my life and it looking completely different than ever expected... being a parent of a child is for a lifetime, but not to the extent of being a parent of a special needs child. I think about the impact on Bob, Mattie, and our life as a family. Not to mention the costs of having a child that may need multiple heart surgeries and all sorts of medical attention. My head is swirling. My dreams of what my family would look like have been shattered. After 3 years of struggling with infertility and a 2nd trimester miscarriage I don't "understand" why we couldn't have a healthy kid. I feel like we've been through enough already. It makes me very grateful, however, for my absolutely beautiful little girl, Mattie. It makes me realize how miraculous she is!
I have no idea how to ask you to pray- but just to pray. I will need your prayers, love, and friendship all the more! I feel like I have aged 10 years in the past 2 days. My heart weighs so heavy. And as soon as I know definitive results, I will email you all back.
I love you all and that is why I want to include you in my process. It's going to be a long one. Thank you for letting me be transparent with you. Emailing you all is helpful for me in my processing as well. I know that God can give me what I need... but I just don't know how we're going to do it! It just seems overwhelming.
Thank you for your love and prayers, (we need lots of each right now)
Val, Bob, and Mattie
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