C-bugs Story
Were does one begin when telling a story that doen't have the best end results. I guess the beginning is the best place. In September of 1999 I went to the dr. for my 12 week checkup and was devestated to learn I had miscarried a baby, so I had a d&c and the dr. told us we could try again as soon as we wanted. So the middle of Oct. we found out we were pregnant again. Because I had a blood clot with my first one I had to take Heprin shots twice a day so that meant to follow up with the dr as soon as possible. So I made my apptment for 8 weeks which was the mon after thanksgiving. So the weds before thanksgiving we were headed to lunch when I looked down and saw I was covered in blood. Having had a miscarraige 2 months before I freaked out and rushed to the er. After several test and exams they told us the fetus did not match up to the expected date and to go home and wait to miscaraaige this baby. So devasted we headed home to wait for the weekend to pass so I could see my dr and get the official news. But deep inside my heart I knew the er dr. was wrong and this baby was a survivor because God wouldn't put me through this again so close to the last miscarriage. Monday morning we headed to the dr and we heard the most amazing sound....her little heart beat. I knew in that instant it was a little girl and she was going to be strong willed and determined to make her mark on the world. Forward to when she was due. Her due date was July 25, but I had to be induced due to the heprin so we set it for the 16. So the morning of our anniversary July 9th we went to church and people kept asking how I was doing, I told them I believe I am in labor and I was doing fine. We got home ate dinner and then we proceeded to spend the rest our anniversary in the hospital. Having had the struggles we had with her I knew she would come on her own terms, so at 12:08 am on July 10th she was born. She was 7 lbs and beautiful. I knew she wanted her own day to celebrate and not to share with mom and dad.
She was a beautiful baby, full of life and energy but she spoke her own language until she was 3. She spoke in the world of "Na". Our world revolved around the land of "na", she could hold a whole conversation using the word "na". Because of that she was extremely delayed in speech and also very texture sensitive. We had our last baby 16 months later and those two are inseperable. He followed closely behind in everything good and bad. She loved to dress him up in costumes, makeup and wigs and he loved it. Bug has a great imagination that takes her to other places. When she was 4 she got a 6ft toy giraffe for christmas which she called Betsy. Her and Betsy had their own world. Her stories and adventures would keep us smiling for many years. Betsy became a huge part of our daily lives.
Bug is very socialable, she is very much the leader in all she does. I call her my "queen Bee", it seems like they all want to be around her. She is also extremely shy. We recently moved and we took her to the dr for her checkup and we were told her iron was extremely low because of her lack of eating. SInce she has been a baby she has had issues with textures. She has never eaten meat. She will eat chicken nuggets but only certain ones and she has a very limited diet. Because of this issue her weight is very low for her age and height. Our concern was that because she has this eating issue since she was a baby that it would become a major concern now, and lead to putting her in an eating disorder clinic. So we decided to do allergy testing to determine if that was the cause. We found out she was allergic to alot of foods, peanuts, rice, soy, apples, corn to name a few. Her main staple of food was peanut butter so we had to tell her that she could not eat her beloved peanut butter. She was heart broken and devastated with those results. During all this my husband and I had a secret to tell her that would change her whole world even though she would not know the effects until later.
In August of this year she was complaining of stomach pain and would of ignored it if she hadn't gotten a fever to go with it. We hurried to the er and they did an ultra sound but it was inconclusive so the next step was a CT. I wished with all my heart that the results that they told me was about her appendix but it was more life changing and shocking then that. The dr said we needed to get with our primary care dr as soon as possible because they found an irregular sized uterus. They didn't tell us much more and so we took her home. The next day I called her dr. and she pulled the results and told us the most shocking news. Bug does not have a uterus, she a sliver of tissue where it is suppose to be. My heart broke. Tears still fight their way to the surface as I retell of the shock and pain that we had to deal with. Our dr was amazing, she called the only Pediatric Gyno in NM and talked to her, even though she was out of the country at the time. She even made an appointment for us and tried to calm our fears and concerns. SO I did some research on this rare diability. 1 in 5000 girls are born with this issue, it is a birth defect created during the beginning weeks of formation. It has a long name for it but the intial are MRKH (Mayer-Rokitansky-Kuster-Hauser syndrome ) http://www.indianjurol.com/article.asp?issn=0970-1591;year=2002;volume=18;issue=2;spage=111;epage=116;aulast=Gupta
That website goes into the more technical aspect of this defect. So I searched and researched all I could because I knew that this was not a good thing. The only blessing I feel is that she was diagnosed early enough to allow this defect to become a part of her life and to allow her to adjust to it. It is very rare to be diagnosed this young. Still not having the official word until we visited the specialist we were afraid to believe that this was actually happening. SO our next step was how to tell her without telling her too much info. After talking to the counselor and after my husband and I talked about it decided to tell her the basic information and as matter of fact as possible. How do you tell you child she will never have kids in her stomach, may never have sex normally or without a lot surgery and issues, and she would never have a period, ok the last one was the easiest. So my husband and I had her out with just us the sat before her appt and we felt the time was here. We stopped and got ice cream and talked to her to prepare her for the uppcoming dr appointment. After the peanut butter incident we were scared to tell her because we didn't know how she would react. We told her we had some news and proceeded to tell her the basics that her she would not be able to have kids in her stomach, but we have been preparing and opening up the idea to adoption for the last few weeks so she thought that was fine and she was glad about the lack of periods. It went well on her part but as a parent we look into the future and we see where this is going and it breaks our heart knowing the long road ahead. So we headed to the specialist and she looked at the CT and said that our worse fear was corrct but even more. She also didn't have a uterus she also did not have a vaginal canal. My heart sunk so low I wasn't sure what to say, because after lots of research I knew this process to even have intercourse would be a long and painful road.
So as parents my husband and I have cried many tears and have a lot of concerns with her future relationships. She will need to find someone who is amazing and understanding. We take each day day by day. For the moment we are on standstill because there isn't much to be done. We need to wait for her to mature some more physically then we wil take her back to the specialist. She has told us she would sedate her if she feels the need to do an internal physical exam because she doesn't want her to be traumatized by the exam.
So this journey has so many unknown roads for us. I hope you will follow us with this journey. SHe is an amazing young lady who has a strong foundation on who she is, what she believes and where she is going. We are looking toward this whole experience as a way to help others who are dealing or who will be dealing with this issue. She is a miracle in all her way of living. 1 in 5000 isn't a terrible thing, it just makes her more unique and special.
She was a beautiful baby, full of life and energy but she spoke her own language until she was 3. She spoke in the world of "Na". Our world revolved around the land of "na", she could hold a whole conversation using the word "na". Because of that she was extremely delayed in speech and also very texture sensitive. We had our last baby 16 months later and those two are inseperable. He followed closely behind in everything good and bad. She loved to dress him up in costumes, makeup and wigs and he loved it. Bug has a great imagination that takes her to other places. When she was 4 she got a 6ft toy giraffe for christmas which she called Betsy. Her and Betsy had their own world. Her stories and adventures would keep us smiling for many years. Betsy became a huge part of our daily lives.
Bug is very socialable, she is very much the leader in all she does. I call her my "queen Bee", it seems like they all want to be around her. She is also extremely shy. We recently moved and we took her to the dr for her checkup and we were told her iron was extremely low because of her lack of eating. SInce she has been a baby she has had issues with textures. She has never eaten meat. She will eat chicken nuggets but only certain ones and she has a very limited diet. Because of this issue her weight is very low for her age and height. Our concern was that because she has this eating issue since she was a baby that it would become a major concern now, and lead to putting her in an eating disorder clinic. So we decided to do allergy testing to determine if that was the cause. We found out she was allergic to alot of foods, peanuts, rice, soy, apples, corn to name a few. Her main staple of food was peanut butter so we had to tell her that she could not eat her beloved peanut butter. She was heart broken and devastated with those results. During all this my husband and I had a secret to tell her that would change her whole world even though she would not know the effects until later.
In August of this year she was complaining of stomach pain and would of ignored it if she hadn't gotten a fever to go with it. We hurried to the er and they did an ultra sound but it was inconclusive so the next step was a CT. I wished with all my heart that the results that they told me was about her appendix but it was more life changing and shocking then that. The dr said we needed to get with our primary care dr as soon as possible because they found an irregular sized uterus. They didn't tell us much more and so we took her home. The next day I called her dr. and she pulled the results and told us the most shocking news. Bug does not have a uterus, she a sliver of tissue where it is suppose to be. My heart broke. Tears still fight their way to the surface as I retell of the shock and pain that we had to deal with. Our dr was amazing, she called the only Pediatric Gyno in NM and talked to her, even though she was out of the country at the time. She even made an appointment for us and tried to calm our fears and concerns. SO I did some research on this rare diability. 1 in 5000 girls are born with this issue, it is a birth defect created during the beginning weeks of formation. It has a long name for it but the intial are MRKH (Mayer-Rokitansky-Kuster-Hauser syndrome ) http://www.indianjurol.com/article.asp?issn=0970-1591;year=2002;volume=18;issue=2;spage=111;epage=116;aulast=Gupta
That website goes into the more technical aspect of this defect. So I searched and researched all I could because I knew that this was not a good thing. The only blessing I feel is that she was diagnosed early enough to allow this defect to become a part of her life and to allow her to adjust to it. It is very rare to be diagnosed this young. Still not having the official word until we visited the specialist we were afraid to believe that this was actually happening. SO our next step was how to tell her without telling her too much info. After talking to the counselor and after my husband and I talked about it decided to tell her the basic information and as matter of fact as possible. How do you tell you child she will never have kids in her stomach, may never have sex normally or without a lot surgery and issues, and she would never have a period, ok the last one was the easiest. So my husband and I had her out with just us the sat before her appt and we felt the time was here. We stopped and got ice cream and talked to her to prepare her for the uppcoming dr appointment. After the peanut butter incident we were scared to tell her because we didn't know how she would react. We told her we had some news and proceeded to tell her the basics that her she would not be able to have kids in her stomach, but we have been preparing and opening up the idea to adoption for the last few weeks so she thought that was fine and she was glad about the lack of periods. It went well on her part but as a parent we look into the future and we see where this is going and it breaks our heart knowing the long road ahead. So we headed to the specialist and she looked at the CT and said that our worse fear was corrct but even more. She also didn't have a uterus she also did not have a vaginal canal. My heart sunk so low I wasn't sure what to say, because after lots of research I knew this process to even have intercourse would be a long and painful road.
So as parents my husband and I have cried many tears and have a lot of concerns with her future relationships. She will need to find someone who is amazing and understanding. We take each day day by day. For the moment we are on standstill because there isn't much to be done. We need to wait for her to mature some more physically then we wil take her back to the specialist. She has told us she would sedate her if she feels the need to do an internal physical exam because she doesn't want her to be traumatized by the exam.
So this journey has so many unknown roads for us. I hope you will follow us with this journey. SHe is an amazing young lady who has a strong foundation on who she is, what she believes and where she is going. We are looking toward this whole experience as a way to help others who are dealing or who will be dealing with this issue. She is a miracle in all her way of living. 1 in 5000 isn't a terrible thing, it just makes her more unique and special.
what a challenging road ahead, but at least She has wonderful parents to help guide her through this. We will keep all of you in our prayers.
ReplyDeleteshes an amazing lil girl with even more amazing parents...shes alive,shes here,shes real...i truly believe that out there somewhere waiting in time is a special understanding caring man whom this wont matter...and an angel waiting for a mommy...shes strong, god wouldnt give her more than she could handle....your precious c-bug is a miracle in many ways.just look at all the blessings shes brought to your entire family so far--ssooo much more to come...-we luv u cbug-
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