A week. I can't believe I only have 1 week (5 days now)left! I've been wanting to share my pregnancy story with you, but every time I've tried I couldn't put it into words. I've thought a million times on what i would say, would I keep it simple or would I tell ever painful detail. How do you write about the hardest thing you ever gone through?
Well I'm going to try and go the simple route.......
Early October my very inspired Ob asked me why I wasn't doing my AFP screening. He barely even had to speak about it, before I knew i had to take the test. I felt stupid for even thinking other wise. A week later my results came back with the possibility of my little girl having Trisomy 18 or s.l.o.s. Time literally stopped here. Life was a painful slow motion. I have had many friends with false positives, but I knew deep down something was wrong. We went in for a in depth ultrasound. The first thing the Doctor said was " OK, she has a cleft lip and palate. Now if that's all there is, thats a good thing." Uhhh......what?! A good thing?! I know now that that would have indeed been a "good thing". The Doctor recommended getting an amniocentesis.Which was an easy decision for us. We felt it was necessary for our little girl. A week later our results told us she did not have Trisomy or s.l.o.s. But that she had high levels of protein in her fluid and combined with the cleft palate, my once again very inspired Doctor felt we should test further. We did a new test called microarray. It basically goes over every tiny DNA strand in the body. 2 LONG weeks later we get a call from our Genetics councilor who wanted us to come in right away. At this point I was just praying for an answer or a diagnosis, or a "hey it's only a cleft lip." What we were told was our daughter has a rare chromosome deletion on the short arm of the 1st chromosome. What this meant.....they really couldn't say. As of now there aren't any cases of this particular deletion documented. They gave us some maybes and some percentages. All her major organs are looking great. But it will be mainly a wait and see. I do know that having faith in god's plan for me has been my comfort. The fact that she has made it this far is a blessing. I have had an amazing out pour of love and service from friends and family. I could really go on and on about heartbreak, despair, inspired people and faith but just know that I have experienced all four and more. Thank you to every one who has kept us in their prayers. We need them.
18 comments:
I know I don't know you but I love your blog and this post made me cry...kind of a lot. I know as someone you don't know this is probably little comfort but I will be praying for you.
I will pray for you. I send my love your way.
i'm worried about you!!! i'm so sad that you've had to go through this and that there is more to come. i am however so impressed with your faith and strength. you guys will be in our prayers. love you!
Ruth,
I had heard something from my mom (JoAnn) about a concern with your pregnancy. I don't really know what to say or do. I do think about you, especially when I see that one-eye red guy on T.V. I say a quick silent prayer for you.
I had a baby girl in October. We named her Ruth. Ruth was my great grandma's name...but mainly I love it because Ruth is a strong name. It is a dependable name. You also inspired the name. Since I was a pre-teen I have loved your name. I loved your black & white checker room.
Our Ruthie is so beautiful. She has a full (I mean full) head of thick black hair. She is charming.
God Bless you guys. We are praying for you in Mississippi.
Ruth, my heart is breaking for you and the pain you have endured. You are in my prayers.
Hi Ruth,
Thanks for sharing what is going on with all of us. You have more people who love you and your family (including me) than anyone I know of. My nephew Parker has a unique chromosome problem as well, one they say they haven't seen before as well. I know what a mixture of emotions my sister went and goes through, especially the not knowing for sure what to expect part. I can say that Parker has always outperformed everything the Doctors have predicted. I'm sure you have a lot of friends and family who are there for you but if you ever need someone else call me or if you'd like to talk to my sister-she knows so much about services and support. I'm praying for all of the best outcomes for you guys and your sweet girl. All of your kids are so lucky to have a mom and dad like you two!
Sorry if this is way too long, maybe I should have emailed ;)
Ruth and Scott.....
All I can say is you are in my thoughts daily, and I am keeping you and your sweet baby girl in my prayers! BIG HUGS!!!!!
ruth, my heart is just aching for you. you're in my prayers and i know you'll be able to handle whatever happens becase you're amazing like that.
Thank you for posting that! I've been thinking about you and hoping everything was going ok with the baby! You are such a strong person and I know everything will be ok just because of who you are and how you can handle everything that comes your way. You'll be in my prayers!!
Aww, sweetie, i'm going to pray for you. Don't you worry- the girl is going to be a lot of fun. Keep you faith- it's going to be great. Do keep us posted!
Hey- but i notice now that it is the 18th of March today- all the best!
just want you to know how much we love you guys.... we can't wait to meet little Davey
Ruth,
I am a friend of Terri's and Cathy's. I lived in the small town for about 2 years. I have a daughter with a rare chromosome anomaly also. She has a duplication of the #3 chromosome. Not much is known about this either. We have seen geneticists, audiologist, neurologists, and just recently a psychologist. Hannah will be 3 in May. She is getting ready to start preschool. Since we are not sure what causes this chromosome anomaly or what it causes, there are frustrations all the time. Hannah does not vocalize at all, so I am teaching her sign language right now, so she has some way to communicate. She is a very sweet girl. She loves to clap, give high fives, and kisses and hugs. We also have our other daughter Jeni who is developmentally delayed and other things that we are still trying to figure out with tests and specialists. Jeni was tested for the chromosome anomaly and did not have it. They are just over 10 1/2 months apart, so it is difficult. Hannah had jaundice when she was born too, she was in the NICU for a couple of weeks. She was prepared for a blood transfusion, but, did not need it, thankfully. I understand Davey did, and that had to be painful. I am here to offer you support and a listening ear, from one mom to another who understands the frustration and other feelings you are currently going through and will continue to go through. Be strong, remember the faith. Stay close to those who mean so much to you. Accept help whenever someone offers it. Be sure to keep your relationship with you husband strong also. Take a break when you feel you need one. If you need help with anything or have questions about something, I hope you will ask. Get in touch with the Regional Center in your area once Davey comes home, they will be a tremendous strength and assistance to you. Feel free to contact me at any time. signlanguage_2004@yahoo.com
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Thanks a lot.
Hi Ruth,
I went to high school with your husband Scott, we sang in chamber choir together. My husband and I have 4 children (3 boys and 1 girl), our youngest, Ayden, has Translocation Down Syndrome. During my pregnancy, I had the AFP blood testing which came back normal. We found out Ayden had DS one day after his birth. Since his birth we have seen more doctors than I can remember. Ayden is the reason I went back to school to get a Ph.D. in genetics. He has been such a blessing and I have learned so much about life from Ayden. There have been days of heartache and despair, then there are those times when I see Ayden smile and hear his laugh that gets me through the day. I will keep your family in my thoughts and prayers.
Hi Ruth,
Our Son was just diagnosed with Chrom 1 deletion for 1p31.3-1p31.1. We were so happy to see your blog. Thank you for posting. Our boy is 5 years old and has not expressed the same symptoms that I've read about on your blog so far. I would love to connect with you as you are aware this deletion is so uncommon. Please email me if your open to discussing your journey.
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