Saturday, August 15, 2009

20-Week Dr Visit: Part 3, The Real Deal

Before I start part 3 of the story, I just want to say how truly amazed I am at all of the overwhelming support given to us by our friends, family and complete strangers during this time. I just returned from a conference where I had no access to my blog (ack!) to see 21 comments to my last post… 19 from people I had never met before! I read them this morning with tears streaming down my face. I am overcome with emotions at the beautiful words of encouragement and complete kindness of strangers. Thank you, thank you, thank you. We have found solace knowing that we are not in this alone.


Our heads were spinning as we left the hospital. I called my work to let them know that I wasn’t going to be able to make it back that afternoon. I wasn’t ready to face all of the smiling, inquisitive folks who just wanted to know the sexes of the two little ones growing inside of me. I wasn’t prepared to answer. In fact, the last news given to us completely trumped the fact that we were having two little girls. We didn’t send out a massive text… we didn’t post updates to facebook… we didn’t call all of our friends and family to tell them the good news… we just weren’t up for any chatting at that point.

After a very silent, uncomfortable lunch at our favorite diner, we went home to process the information. We went back and forth about our options and our feelings on having a child with Down syndrome. I think we talked through all 5 stages of grief that night. At one point, I went into the shower to find some solitude and allow myself to experience every emotion I needed to. I cried to God and prayed for him to give me two healthy little girls without Down syndrome. Then I cursed myself for being so selfish and thinking that way. I was disappointed in myself and ashamed that I didn’t want a child with any disabilities. Because I work with adults with disabilities, I thought “I outta know better” and should completely embrace the news. I thought “I know that a diagnosis of Down syndrome is not a death sentence and that plenty of people live full and happy lives with it. I know that people with Down syndrome are beautiful, loving people who enrich the lives of others. And I know that the relationship that Damon and I have is more solid than stone and that we would be incredible parents with lots of love to give to a special needs child.”

Then the pendulum swung the other way and I again begged God not to have a child with Down syndrome. It took me sleeping on it and a lot of praying that night to calm down and accept the possibility. I also started to feel better about my odds and decided to focus on the positive.

We’ve decided not to do any genetic testing. To us, it doesn’t matter if one of our babies has any birth defects. We would still have her, raise her and love her unconditionally.

We did, however, decide to have my blood tested to get a more accurate “risk” result. The chemical levels in my blood actually decreased the risk for the babies. Baby B now has a 1 in 620 chance and Baby A’s risk has gone down to 1 in 80.

Worry, fear and doubt still creep into my head every once in awhile, but I try to push them out and focus on the positive. Worrying about it won’t change anything, fear won’t make things better and doubt won’t allow me to be excited that I am having two precious little girls. So when I start feeling down, I just go out and buy them something adorable. There’s a lot to be said for retail therapy.


  1. you have to grieve for the baby you didn't's perfectly natural and healthy to do not feel ashamed, or less than the perfect mother just because of that. We all did that.

    Besides, you have to get the grieving out of the way so that you can prepare for the celebration.

    even though we had the amnio....i still kept hope throughout the pregnancy that there was a mess up in the lab....:-)- ITS ALL OK! we are human, after all.

    I, for one, and we've thrown this out in a poll among the moms...was HAPPY to have the knowledge before hand. there are some really awesome birth announcements that can be that all family and friends are aware of the situation and will be ready to help you well as knowing the possiblities that can come with our kids, and having a trained eye for early intervention.

    oh...i have to say it one more time,


    now, what about gonna go with sandy and mandy? jill and lill?? or do you have something special in mind???

    do tell!

  2. I am so glad that we could help you feel even the slightest relief. One lady mentioned in her comment on the previous post about a poem called "Welcome to Holland" and I thoughtI would like to share it with you Http://

  3. Another stranger chiming in to say I wish you the best with your pregnancy! Your daughters are going to be perfect and beautiful regardless of the chromosome count, and it sounds like they have wonderful parents to share their lives with.

    I often think how lucky we were to not know prenatally that our son has Down syndrome. It was so much easier when I had him in my arms to hold.

  4. Another complete stranger here. We found out prenatally about our daughter's Ds and it was for the best. It gave me time to begin working through the grief period and to learn as much as I could. Our daughter is a beautiful little girl who continues to amaze us every day. As you can see, we are a tight knit community that is ready to hold you guys up and support you with open arms. Be kind to one another and congratulations on the twins.

  5. well, you have managed to get through several of those icky "stages" pretty quickly, lol. You remind me of me, actually. Im the one who posted a link to my blog, my daughter is 11. You know, more than anything, just know you are normal. And frankly, it isnt wrong for you to wish your child wouldnt be born with DS, I dont think anyone really wishes for it, except the amazing families who adopt kids with Ds after discovering what a joy they are. Above all else, allow yourself to feel however you feel.

    I tend to not really agree with the whole "gotta grieve" thing either, I wasted a lot of time and energy believing I should grieve a child I had wanted, it sorta put me in the state of mind that the one i GOT wasnt "good enough". SHE never changed, it was only my perspective that did, she was the same little person since conception, kicking away, hiccuping, but *I* was different. if anything, looking back, I should have celebrated. She changed me for the better. :) Your baby girl may have DS, and she may not. But she will be gifted with a twin who will be her best teacher, and parents who so clearly have their priorities straight. CONGRATS!! And I second the comment about the announcements, your attitude and positive input will teach your friends and family how to follow. You will want them to be positive, because after all, this is a BABY! :) If you want to chat, im at

  6. Retail therapy....YESSS! Works every time! Funny thing is, I could be out shopping for ANYTHING and it would make me feel better. I find the most satisfaction buying for the house or day I will buy something REALLY frivolous for me.

    BTW, I LOVED wearing those belly bands you mentioned. I am really tall, so maternity clothes were often too short and revealed a bit too much for my comfort. I have found some xxtra looong camisoles at a great price that I still wear today:

  7. I am sitting reading your blog and tears have filled my eyes. I too was given the diagnosis at 6 months. I went through every emotion possible. I fought with grief and fear as well. However, once I held our beautiful baby boy who had Trisomy 21 all of that faded away. It is so sad that the diagnosis of Down's Syndrome has to be so dreaded, both by the doctor's and the patient. I am so grateful every day of my life that God has given me this child. It has been one of the greatest gifts to be the parent for this child. So many lessons one can only learn from their amazing beauty. If one of your children turns out to have Down Syndrome look at the opportunity her twin will have to learn a compassion and love that can not be learned in any other way. Please do not be afraid! If either of your children has Down Syndrome your life will be so full every day of love and joy like you could never imagine!!

  8. Congratulations on your pregnancy! Twins!! How exciting!

    My daughter, Lucy, just turned two years old. We found out that she has Down sydrome the day she was born. She is the absolute light of my life. I keep a blog, where I talk a lot about our lives with Down sydrome. When you feel ready, I'd love it if you'd come visit!! We're at

    Congrats again!

  9. When I was pregnant with my last child, I declined all testing. An ultrasound found a heart defect and I heard the words Down syndrome for the first of many times.

    I prayed for a miracle, and I got one. Just not the one I expected.

    If you get curious about parenting a baby with Down syndrome, or want to get prepared "just in case", come visit my blog, Down Syndrome New Mama. It is dedicated to topics of interest to new parents.

  10. This is actually Laura speaking...
    We declined all tests with all of our girls. We found out about our special 3rd girlie 4 days after she was born. Yes, I have had "those" moments and still do some days, but it does get better. People told me in the beginning you would not even "see" DS and I couldn't believe them. They knew what they were talking about.

    Good luck with your pregnancy...I hope it is full of many happy, glorious moments!

  11. Jenny, It sounds like your babies have very weak markers for Down syndrome. The EIF is a very weak marker, and limb length is not a really strong one either. Two of my sisters had babies with EIF, and one of those babies had other markers as well - neither have Down syndrome. Well, you do have more info - the "odds" now are what they are based on this info.

    Since there are always moms who are the "1 in" moms, like me, I do invite you to check out our "Down syndrome pregnancy" discussion board, created specifically for pregnant moms whose babies have Down syndrome or a higher chance of having Down syndrome. One of our moms found out last year that one of her twins had a greater than 1 in 10 chance of Down syndrome (I think it was 1 in 5). She spent the remainder of her pregnancy with us, and while neither of her babies was born with Down syndrome, she still visits to support other moms, especially with a twin pregnancy.

    You may wish to stay focused on the pregnancy and not think about "what ifs" but if you'd like to prepare "just in case" please feel free to lurk or visit us.

    Good luck and enjoy your pregnancy! Nancy

  12. Hi, I followed Rebecca's link here and firstly want to say CONGRATULATIONS!!! on your pregnancy and the prospect of twins :)

    As another complete stranger commenter on your blog, I'm sure it will come as no surprise that I too have a daughter with DS. On my main blog, Ramblings of the Bearded One there are various entries involving my 11 year old daughter, Meg. Some of them are under the label Down's Syndrome (I'm from the UK, where we use the apostrophe and S), but most are simply under fatherhood or family man.

    And this is why I wanted to comment - unless I've missed on, I think all the parents of children with DS who have commented so far are mothers. But I just wanted to let you know that Damon isn't alone either - there are fathers out there too who love their children and understand the fears and worries from a male perspective.

    My profile has my email on it, so if you or Damon would like to ask any questions, then please feel free.

    However, whether your daughters have DS or not, I wish you all the best as one parent to another :)

    With warmth,


  13. You guys have been in my thoughts so much lately. You are definitely not alone and I know no matter what comes your way, the blessings growing inside of you will trumph any obsticle that may or may not occur. What have a friend fighting to get pregnant right now and they don't think any fertility treatments will help them due to the issues the are facing with their infertility. Brian and I thought to ourselves, that of all the people we know, they are the best equiped to deal with that possibility and to maybe just adopt a child who needs a loving home. In a way, It hink of you and Damon like that too. If, on the small chance, that your baby has a special need, who else in this world would be better able to help guide them through this life? Who better to love, teach, and raise them to be the best they can be and to enrich the world in their own miraculous way?

    In the meantime, I will pray for you to continue to have a healthy and happy pregnancy Jen. You deserve to bask in your beautiful glow (swollen feet or not!!). You will be an amazing momma no matter what occurs. You have so much wisdom about you and I can tell, so much pure love. It is a beautiful thing to experience all of this through your emotional (and hilarious) writing. Your have many gifts to share with your babies. (and yes dameon...I'm sure you do too! haha sorry to only gush over your amazing wife!)

  14. Congrats on your baby girls! I vividly remember our 20 week ultrasound as well, with an abnormal heart indicating our little boy had Down syndrome. I too experienced a range of emotions, some I am now ashamed of, but all were essential to helping me get where I am now. And where is that...loving my little one year old with Down syndrome. The biggest blessing to my husband and I, and probably the cutest boy ever. It's okay to grieve, be sad, mad, confused, etc, but it's also okay to be happy and thankful. I think it was harder for us to convince others of this than ourselves. You sound like you're in a great place and I wish you nothing but the best. Enjoy your pregnancy! It's such an amazing gift.

  15. My dear sweet daughter, I love you more than words can say and I'm am so very proud of the fine,beautiful person that you are. I wish I could hold you right now and ease your uneasiness. God blesses you with two beautiful girls in whatever form he decides is best for everyone. And those little ones will be so lucky to have two loving parents like you and Damon.
    Your two beautiful girls will enrich your life in ways you can't imagine right now. They will give you a depth of love only parents can ever know.
    I love you, honey,

  16. Hello!

    I am also a stranger! First I would like to say CONGRATULATIONS on having twin girls....WOW! I wrote this comment several different times as I never know if I should comment, and if you will care. I just wanted to share a little about my story.....maybe just maybe it might help.

    At my 20 week ultrasound, my baby showed that it's left kidney was enlarged. We went for a level 2 ultrasound (I guess they can look at things more in depth). Did you have a level 2 ultrasound? At that ultrasound, they found that her ventricle was enlarged in the brain. They told us the only way to find out if our baby had a chromosome issue was to do an amniocentesis. Of course, they gave us all of the odds......we did not want to take that chance.

    My husband researched some other avenues and found that they can do fetal MRI's on you to look at the baby. We decided to take this route because it was not harmful to the baby. At that point, we did find out that our baby had a heart condition and would need surgery after she was born! The MRI was not given to us and option.....we had to ASK for it!!!

    We, of course, we were blessed with a baby girl Mara. She does have Ds, and is the best thing that has happened to us! I too, went through all of the same emotions that I am sure you are having.

    I really just was tell you my story to see if maybe you can have other tests done that will give you a better indication if your babies have Ds or not. It might be worth discussing with your doctor.

    Now, this still does not give you 100% results, but it helped us in preparing for her health needs after birth. We had a birthing plan written up for all of the doctor's and prepared for her to be transported to our local Children's hospital directly after birth. We didn't have to wait around for more tests, etc.

    If you would like to discuss further, you can email me at

    Many hugs and lots of prayers for you and your beautiful family!!!!!


  17. It's me again. I forgot to mention that after our MRI when we found the heart issue, we also had a fetal Echocardiogram to confirm the heart condition. I had NO idea that they can do all of these tests through the mommy to the baby......


  18. Jenny, I understand all that you are feeling and believe me you will make it through this time. Sometimes I wish I had known while I was pregnant to give me time to process it, but it didn't happen that way for me. I found out the day she was born that something was going on. Then again not knowing gave me a good pregnancy. No matter what happens I am so sure of one thing. You will love them so much. You love them now. You touch your belly numerous times I bet. Feeling and praying. I think of you often and am praying for you. God bless.

  19. A stranger again posting my 2 cents!
    CONGRATS on the baby girls!!!! My SIL had my twin nieces 2 months before our little boy was born - no offense to boys (cause I LOVE them) but shopping for TWIN GIRLS has to be the best!!!!
    We got the news after our little boy was a week old that he had ds. It shattered my world and brought my husband and I both closer to God and each other. My other kids adore him and just last week he started pre-school!! Oh yeah, we loved the "designer genes" so much, that we went and adopted a little boy with ds for them to grow up together! Miracles do happen - just sometimes they are a little different than we pictured at first :)
    You look incredible for being a mommy of two!!
    God Bless,

  20. Hi Jen - I've been following your blog & have to say you certainly have a gift with your words. I've been laughing & crying with you along the way. We haven't seen each other in many years but once upon a time we knew each other very well. The things that drew me to you were your hilarious nature, your compassion for those around you, your complete optimism & your enthusiasm for life in general. I believe these are things that do not change. I also believe that we tend to surround ourselves with those most like us so I expect that with your hubby you have doubled your great qualities. The two of you have so much to share with your girls & I have no doubts that you will be fantastic parents that shower them in love & affection. I pray that your uneasiness is minimal & am confident that you have the strength to take on anything that may come.