I am so happy to say that an author writing a book about the prenatal aspects of Down syndrome contacted me. She wanted to include a section in her book about losing a child with DS. She will be including a paragraph I wrote, as well as a link to this blog. The reason for the link to the blog is that I am working on a special project - a way for those who have lost a child with Down syndrome to honor the memory of their child. I will post info as soon as I have more of the kinks worked out, and those wishing to participate will have an opportunity to learn more about the project via a designated page on this blog.
The book is entitled:
Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome
Friday, April 30, 2010
Thursday, April 29, 2010
Tombstone
We're still waiting on Gabby's tombstone. I think I may have posted about this on CaringBridge. Gabby's tombstone is going to be in the shape of heart. While it was being made, the heart ended up with a cut/gash in it. So, the company is having to start over. **sigh** Waiting...waiting...waiting. I'll be so glad to get it in place.
Sunday, April 25, 2010
Adoption and Babies
Months ago, I called with the Down syndrome adoption program in Cincinnati. I had a phone consult with the wonderful lady that coordinates the program. I asked for the initial paperwork to be mailed to us. I prayed. I waited. The papers came, but Jason said he did not believe adoption was the route we should take. I still have the papers and am just not sure what to do with them at this point. There are over 200 families on a waiting list to adopt a baby with Down syndrome in the US. I would love to be on that list for so many different reasons. I checked into having a home study done, did my research, and was so ready to move forward. But it is not my decision to make alone. And I know it would truly require a miracle to make it happen financially. I found out there are many grants to apply for (including Steven Curtis Chapman's grant), but it is very competitive. I also found out that sometimes agencies will reduce or waive some fees for adoptions involving a child with Down syndrome or other "special needs." But that is not guaranteed.
Jason is hopeful that we may be able to conceive again. I almost hesitate to say this, as only a few people know, but we have been trying to conceive since the month after Gabby's passing. We are on our 5th month. We have been on fertility medications for 3 of those months. The month after losing our child was not an "ideal" time to start trying. It has been extremely draining, emotionally. But we knew that we were likely going to again face many months, if not years, of trying. I am not far from 34 and know that in reproductive terms, that is getting "up there" in age, especially with my history. We will soon begin our 6th month of trying. We have ZERO insurance coverage for any diagnostic procedures, treatments, or medications for infertility. Insurance companies will pay for abortions, but they will not pay for infertility in many states. I have a lot to say about that, but I better not get started on it or I'll just raise my blood pressure. I have checked into grants for infertility treatments, but most of them require the couple to have no living children. The one that didn't required a $50+ membership fee just to APPLY for the grant. And it was made clear that preference would be given to couples with no children.
Please pray for us, as we try to be hopeful for a new child and grieve for the one no longer here with us - all at the same time. And please pray for my health, as I try to lose the 20 lbs I've gained with each baby and the 20 more gained from fertility medication.
Jason is hopeful that we may be able to conceive again. I almost hesitate to say this, as only a few people know, but we have been trying to conceive since the month after Gabby's passing. We are on our 5th month. We have been on fertility medications for 3 of those months. The month after losing our child was not an "ideal" time to start trying. It has been extremely draining, emotionally. But we knew that we were likely going to again face many months, if not years, of trying. I am not far from 34 and know that in reproductive terms, that is getting "up there" in age, especially with my history. We will soon begin our 6th month of trying. We have ZERO insurance coverage for any diagnostic procedures, treatments, or medications for infertility. Insurance companies will pay for abortions, but they will not pay for infertility in many states. I have a lot to say about that, but I better not get started on it or I'll just raise my blood pressure. I have checked into grants for infertility treatments, but most of them require the couple to have no living children. The one that didn't required a $50+ membership fee just to APPLY for the grant. And it was made clear that preference would be given to couples with no children.
Please pray for us, as we try to be hopeful for a new child and grieve for the one no longer here with us - all at the same time. And please pray for my health, as I try to lose the 20 lbs I've gained with each baby and the 20 more gained from fertility medication.
Friday, April 23, 2010
One year ago today...
The phone rang and I heard the words, "Your baby has Down syndrome." Life changed. At first, I thought it was changing for the worse. Now, I know what a blessing those words were. I will FOREVER be the mother of a child with Down syndrome, and I believe that is a blessing.
Wednesday, April 21, 2010
Olivia
I can't believe how fast she's growing up. At almost 5 1/2, she can read chapter books (2nd-3rd grade level) with almost no assistance. She continues to amaze us with her vocabulary. Today, she said, "Mommy, that isn't necessarily what happened. It was actually an accident." She has a great sense of humor. She's learning to ride her bike with no training wheels and doing great. She still wakes up during the night a couple of times a week, but we sure have come a long way with overcoming sleep problems. She loves reading, painting, singing, and dressing up (multiple times each day). She's extremely passionate about everything she does. She is very nurturing. She keeps me laughing.
The Breast Pump Saga
If you were a follower of our story on CaringBridge, you may remember the breast pump saga. We had a TERRIBLE time getting a breast pump when Gabby was born. We needed a hospital grade pump, and our insurance would not cover a penny of it. I could write a lengthy account of what all we went through to finally get a pump, but I'll just say it was something I'll never forget and something that caused me to miss out on some precious time with my daughter. Now that Gabby has been gone for 5 months, we received a notice telling us that the breast pump would not be covered and that we would owe several hundred dollars. I thought there was possibly a mistake in billing, so I made lots of phone calls (with an impatient 5-year-old interrupting me the entire time). Making the calls was very emotional for me. Finally I called the medical equipment company and asked them about the total charges. They remembered us and our situation. The very nice lady said she needed to look at the billing info, so she put me on hold. After a couple of minutes, she came back to the phone and said, "The entire bill has been written off. They (the owners I assume) figured you had been through enough and this was the last thing you needed to worry about." I cried and thanked her. I was amazed again at how God takes care of things.
It is very hard, emotionally, to owe for medical bills for one's deceased child. We still owe about $1700 to the hospital for a fetal echo and the c-section. I never knew that seeing a statement in the mail could make me so emotional.
McKenna started therapy this week and hopefully Olivia will start soon also. McKenna will probably be having some testing done to determine whether or not she has Asperger syndrome. She was unofficially dx with it a few years ago via a phone conference with a child psychologist. But we were unable to have testing done at the time due to insurance issues. Please pray for McKenna as she continues in therapy. This is greatly needed and long overdue.
It is very hard, emotionally, to owe for medical bills for one's deceased child. We still owe about $1700 to the hospital for a fetal echo and the c-section. I never knew that seeing a statement in the mail could make me so emotional.
McKenna started therapy this week and hopefully Olivia will start soon also. McKenna will probably be having some testing done to determine whether or not she has Asperger syndrome. She was unofficially dx with it a few years ago via a phone conference with a child psychologist. But we were unable to have testing done at the time due to insurance issues. Please pray for McKenna as she continues in therapy. This is greatly needed and long overdue.
Sunday, April 18, 2010
In the beginning...
After "blogging" on CaringBridge for nearly a year now, I felt it was time to move on and create a blog that would allow me a little more freedom to post links and all that good stuff. This is just a little therapeutic opportunity for me, and if you happen to get something out of it - all the better. So I should start by doing a brief overview of my little family for those here who do not know us.
Jason and I met and started "dating" in high school when we were both age 15. We have been together ever since - married for almost 13 years and together almost 18.5 years. After getting married, we lived in Nicholasville while we were both still attending the University of KY. In 1999, I graduated with B.S. in Individual and Family Development (Human Environmental Sciences). In 2000, Jason graduated with a B.A. in Architecture.
We began trying to build our family just a couple of years after getting married. After a year or so of trying and no positive pregnancy test, we started seeking medical advice. I had a laparoscopy to remove endometriosis. I had an HSG (tube dye test) to make sure my tubes were open (they were). Jason and I BOTH had multiple tests to check everything, and we discovered I was not the only one with some barriers to fertility. The results of Jason's tests were very discouraging, and we later learned that couples with those results are often told IVF is their only chance of getting pregnant. At the time, we didn't know this. So, I began taking Clomid to try to increase our chances. We had 2 intrauterine inseminations (IUI). Neither worked. We had no insurance coverage for any of the testing or treatments, and I literally counted out change to help pay for one of the IUIs. In fact, we're probably STILL paying on them. After those failed, we gave up hope. It had been 3 years of negative pregnancy tests, surgeries, ultrasounds, testing, medicines, injections, and heartache. I was exhausted. I began to look into adoption and dream that we would somehow be able to afford it. The month after we stopped trying to get pregnant, we conceived "naturally." It was a miracle, considering the numbers we were up against.
In September of 2002, McKenna was born. I knew it could take a long time to conceive again, so we started trying for another when McKenna was still a baby. It took 12 months (no meds this time). Then Olivia was born in November of 2004.
The years of infertility had created within me a very deep appreciation of the miracle of life. I knew in my heart that we were not done having children. So we started trying again. This time around, I had another laparoscopy and also found out I have polycystic ovaries (but not polycystic ovarian syndrome). After 26 more months of trying and all the stress and heartache that goes along with it, we were ecstatic to find out we were expecting in November of 2008. Little did I know that one year later, my life would be very different.
In April of 2009, we were shocked and terrified when we learned our baby girl had Down syndrome and complex congenital heart defects that were incompatible with life and would require open-heart surgery in infancy. At the time, I thought getting that news was the hardest thing I'd ever have to face in life. I was wrong.
My precious Gabby was born on July 11th, 2009. She had to be delivered 4 weeks early because of low amniotic fluid. She was transverse, so I had to have my first c-section (not fun). Despite her health issues, Gabby did well for a while. By 2 mos. of age, she was in congestive heart failure. But she still managed to meet many of her milestones before her older sisters had as infants. She was smiling and laughing and learning to hold her toys. At age 4 months, her heart was enlarged and surgery could wait no longer. On Nov. 18th, 2009, I handed my baby girl over for her open-heart surgery. That moment remains on my list of the hardest moments of my life. I kissed her head and held her hand. Then the anesthesiologist stopped and turned back to me and said, "Kiss her again, mom." I remember getting a very strange feeling at that moment and I lunged for Gabby and kissed her again. I'm so glad I did.
She had some complications during surgery but was expected to be okay. Unfortunately, the night after her surgery, Gabby started having major complications. Two days later, I held her swollen, battered body in my arms as she was removed from life support and took her last breaths. Jason was by my side as we whispered to Gabby that she could go to Jesus. "Let go, baby girl. It's okay. We'll be there before you know it."
Almost 5 months have passed since that day, and the grief has not gotten any easier to handle. It's different now than in those first few weeks. But it is not easier. I keep the memory of Gabby alive by actively advocating for all babies with Down syndrome and heart defects. I spend a great deal of time on that daily and have no doubt that God has had this planned for quite some time. This is MY purpose, and I do it for Him and for Gabby.
Jason and I met and started "dating" in high school when we were both age 15. We have been together ever since - married for almost 13 years and together almost 18.5 years. After getting married, we lived in Nicholasville while we were both still attending the University of KY. In 1999, I graduated with B.S. in Individual and Family Development (Human Environmental Sciences). In 2000, Jason graduated with a B.A. in Architecture.
We began trying to build our family just a couple of years after getting married. After a year or so of trying and no positive pregnancy test, we started seeking medical advice. I had a laparoscopy to remove endometriosis. I had an HSG (tube dye test) to make sure my tubes were open (they were). Jason and I BOTH had multiple tests to check everything, and we discovered I was not the only one with some barriers to fertility. The results of Jason's tests were very discouraging, and we later learned that couples with those results are often told IVF is their only chance of getting pregnant. At the time, we didn't know this. So, I began taking Clomid to try to increase our chances. We had 2 intrauterine inseminations (IUI). Neither worked. We had no insurance coverage for any of the testing or treatments, and I literally counted out change to help pay for one of the IUIs. In fact, we're probably STILL paying on them. After those failed, we gave up hope. It had been 3 years of negative pregnancy tests, surgeries, ultrasounds, testing, medicines, injections, and heartache. I was exhausted. I began to look into adoption and dream that we would somehow be able to afford it. The month after we stopped trying to get pregnant, we conceived "naturally." It was a miracle, considering the numbers we were up against.
In September of 2002, McKenna was born. I knew it could take a long time to conceive again, so we started trying for another when McKenna was still a baby. It took 12 months (no meds this time). Then Olivia was born in November of 2004.
The years of infertility had created within me a very deep appreciation of the miracle of life. I knew in my heart that we were not done having children. So we started trying again. This time around, I had another laparoscopy and also found out I have polycystic ovaries (but not polycystic ovarian syndrome). After 26 more months of trying and all the stress and heartache that goes along with it, we were ecstatic to find out we were expecting in November of 2008. Little did I know that one year later, my life would be very different.
In April of 2009, we were shocked and terrified when we learned our baby girl had Down syndrome and complex congenital heart defects that were incompatible with life and would require open-heart surgery in infancy. At the time, I thought getting that news was the hardest thing I'd ever have to face in life. I was wrong.
My precious Gabby was born on July 11th, 2009. She had to be delivered 4 weeks early because of low amniotic fluid. She was transverse, so I had to have my first c-section (not fun). Despite her health issues, Gabby did well for a while. By 2 mos. of age, she was in congestive heart failure. But she still managed to meet many of her milestones before her older sisters had as infants. She was smiling and laughing and learning to hold her toys. At age 4 months, her heart was enlarged and surgery could wait no longer. On Nov. 18th, 2009, I handed my baby girl over for her open-heart surgery. That moment remains on my list of the hardest moments of my life. I kissed her head and held her hand. Then the anesthesiologist stopped and turned back to me and said, "Kiss her again, mom." I remember getting a very strange feeling at that moment and I lunged for Gabby and kissed her again. I'm so glad I did.
She had some complications during surgery but was expected to be okay. Unfortunately, the night after her surgery, Gabby started having major complications. Two days later, I held her swollen, battered body in my arms as she was removed from life support and took her last breaths. Jason was by my side as we whispered to Gabby that she could go to Jesus. "Let go, baby girl. It's okay. We'll be there before you know it."
Almost 5 months have passed since that day, and the grief has not gotten any easier to handle. It's different now than in those first few weeks. But it is not easier. I keep the memory of Gabby alive by actively advocating for all babies with Down syndrome and heart defects. I spend a great deal of time on that daily and have no doubt that God has had this planned for quite some time. This is MY purpose, and I do it for Him and for Gabby.
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