Monday, June 29, 2009

We begin our journey with Kaitlyn

We were so excited to find out we were pregnant. Cautiously optimistic due to the previous miscarriage but thrilled none the less. The pregnancy started off normal and I quickly developed morning sickness. This pregnancy was off to a good start. (I never got sick during the pregnancy that ended in miscarriage) To me being sick is miserable but comforting?!

As the first trimester came to an end I started letting myself look into our future and see us as a family of 5. I was always convinced it was a boy, deep down suppressing my desire for a little girl. When asked what I hoped for I always replied by saying "healthy, as long as the baby is healthy," never admitting how bad I longed for a little girl.

At around 4 months my doctor asked me if I wanted to have the quad screen test.
I agreed. I had it done with the boys and had always figured I would rather know if the baby had any health concerns so I (we) could be prepared. Abortion was never an option for us. I got my blood work done that day and honestly didn't give it another thought. Time went on and I grew anxious for our 20 week ultrasound secretly hoping to find out it was a girl.

Side story: A few weeks before the ultrasound I went to the bank and spoke to the teller. She was quite pregnant. We engaged in pregnancy chat and I told her of my upcoming ultrasound. She proceeded to tell me of her good friend who was also pregnant who just found out her baby had Down syndrome. My heart broke for her and I got chills. It was in that moment that I began to feel so guilty. I had been so focused on wanting a girl I disregarded the whole purpose of the 20 wk ultrasound. It's a health screen, and growth scan; finding out the sex of the baby is merely a perk. Deep down having a healthy baby was always the most important thing, but I had let myself lose sight of that.

Within days of visiting the bank the doctors office called. My heart sank. I wasn't due to go in for a couple weeks...why would they call...oh my gosh, the quad test. I instantly felt ill. They asked if I could come in that morning. The doctor was leaving for a few days and needed to see me ASAP. I called my sister to watch the boys and Blair and I headed for the doctor. My mind raced the whole hour it took for us to get to the office. What did the quad test screen for again?... Where did I put the brochure?...Is this really happening?.....When we arrived we were informed that our baby had a 1/80 chance of having Down syndrome. We were advised to meet with a genetic counselor and a high risk OB for a special ultrasound which would look for any other markers for DS. After that I would be given the option for an amniocentesis, which would be the only sure way (98%) we would know if the baby had DS. After a few days of waiting we went to meet with the specialist and counselor. Before we arrived I knew I wanted the amnio. The idea of the procedure freaked me out but I had to have it done no matter the risk. I had to know! That was a horrible day! We left the office knowing it would take 2 long weeks for the results. The amniotic fluid was being sent to New Mexico where they grow the baby's cells in a dish, then analyze the chromosomes. That day the ultrasound had found a "bright spot" on her heart. We were told this was not consistent with DS, but never the less was enough of a concern to make an appt for a fetal echo cardiogram with a pediatric cardiologist. We scheduled the fetal echo for 7 wks later. Like I said what a horrible day! Did I mention we found out that day it was a girl! The sex didn't quite seem so important anymore.

The days drug on. I became obsessed over the possibility of a heart problem. I partially dismissed the DS. 1/80 is a small chance, right? WRONG! We received a phone call almost 2 wks after the amnio. She had Down syndrome. We were devastated. How could this be? I'm only 29. Those first few weeks were a blur. I spent most of my time reading anything I could get my hands on. I couldn't believe how ignorant and uninformed I had been about DS. Knowledge has become a comfort to me. We definitely have gone through many emotions in the last months, but after much prayer I know now that Kaitlyn is a gift from God. She was meant to have DS and this was meant to be our journey.

The beginning of May we had the fetal echo. The "bright spot" they had seen didn't seem to be an issue. Unfortunately they did find a heart defect that will require open heart surgery at around 4 months of age. The defect is called a complete atrioventricular septal defect (AVSD)
This has been scary for me. I continue to read and gather information. DS blogs have become my greatest sense of comfort. I routinely get ultrasounds to monitor the baby. They estimate her weight at 4lbs 10oz. She's gained almost a pound in 2 weeks. The doctors say she looks good! My c-section is scheduled in 5 weeks. Our journey has begun with Kaitlyn. It has been emotional and scary but I can honestly say I cannot wait to meet her and be her mom. God definitely has a plan for her and I am so thrilled that He chose us to be her parents and live out His plan. Stay tuned as our journey continues.....


  1. Jenee,
    Wow--what a tumultuous time it has been for all of you. My heart aches for you, thinking about how difficult it is getting the diagnosis. It is so hard to imagine what life will be like when Kaitlyn arrives. I can tell you this: she will be beautiful beyond your wildest imaginings, she will be clever and talented, she will teach you more than anyone else you've ever met. This girl has an agenda, and nothing is going to stop her! It's great that Kaitlyn is growing so well too!

    I hope you have made a connection with your local Down syndrome support group. I know that the internet can be a warm and comfortable place, but it really is helpful to have connections with real people, and get to see real babies. I think you'd be in the Western Michigan DSA. They could probably put you in touch with a family or two in your area.

    If you'd let me, I'd love to put a shout out to your blog in my next post, so you'll get a few more visitors and get more input/support. Just email me or post a comment on my blog (Hannah's Shenanigans).

  2. Hi! I don't know how I stumbled across your blog, but I did. You are amazing. Your family will be so blessed to have such a special being enter your home. I have a 14 month old boy who has Down syndrome. We found out when he was 6 months old. The blessings will outweigh the challenges, I promise you that! Blogs have been a wonderful support system for me. I had to learn all of this on my own since it wasn't diagnosed early on. I have recently met some families, and it is wonderful to share this common bond. I would love to follow your journey. It will be beautiful!

  3. Hi Jenee, I am Joyce, Sarah's mom. Welcome to the world of blogging. I think Beth gives some great advice. Our blogging families are a wonderful resource yet human connection is also helpful. Congratulations on having a girl. After two boys I am sure the house could use a little pink:)

    My sweet girl was also born in August, and I too was 29 years old. That was almost twenty years ago, so we are one of the few older bloggers out here. Sarah does a lot of the content herself and I also give my perspective from time to time.

    We did not find out about the Down syndrome until after she was born, so I cannot be much help in your journey right now. I can share that once we got over our initial shock, our Sarah has been the greatest joy. She turned our world topsy turvy, but I would not change a thing. We also have two boys and they adore her like nothing I could have ever imagined.

    I hope and pray that the days leading up to Kaitlyn's delivery are peaceful for you. I so look forward to meeting your new bundle of joy.

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  5. Hi - just found your blog off Down Syndrome New Mama's. We recently adopted a baby boy with Ds. He's 3 months old today, and such a sweetie. He too has an AV canal defect - 4 holes- and will have open heart surgery this summer or early fall we're guessing. Feel free to check out my blog and follow along. Congratulations on your upcoming arrival!

  6. Congradulations! You are entering an amazing world, with ups and downs of course, but so much fun. You need to come to my blog because I just posted a pic of my Jaxson and 3 of his buddies, the cutest kids you'll ever see. Jax had AV canal to, he has had 3 different heart surgeries. Its nice to meet you.
    Our site is

  7. Congratulations on expecting a baby girl. Always remember she's your daughter and baby sister first -- Down syndrome is just a small part of her. Lacey said it... you are entering an amazing world. How lucky for you to connect with families before she's even born! I will keep you in my prayers for a safe and happy delivery. Keep us posted.

  8. Oh, I forgot to say your sons are adorable and your blog looks great!

  9. I look forward to following your journey. You are about to find out that your family just went from ordinary to 'extraordinary'! You are being given a wonderful gift. Morgan is my 4th child of 6 and will be 7 years old in Sept. She had the complete AV Canal and had a successful repair when she was 4 months old. Please feel free to email me anytime with any questions you may have as you approach her surgery. I know how hard that was for us and would love to be any help that I can be. Good luck with these next few weeks and I can't wait to see your new little girl in the next few weeks.

  10. Hi Jenee, I found your blog through Down Syndrome New Mama. I'm so sorry you have received such shocking news, but believe me I know all too well the emotions you are experiencing. It may help you to read my blog, (, which I started writing immediately after the birth of my son who has DS. I also recently created a larger DS news/info site called, on which you will find an animation I created to explain DS to children. Please keep writing and reading other blogs - you will quickly meet a huge and wonderful community of DS bloggers who will welcome you with open arms. And on that note... allow me to welcome you with open arms.

  11. Congratulations! Our baby boy is also due in August and has the AV Canal defect. We found out at 13 weeks into the pregnancy that Elijah has Down syndrome. Being prenatally diagnosed can be overwhelming at times, but use the time to your advantage to prepare for her birth. There are so many wonderful families that we have met through blogging, so you will gain a wealth of information!

  12. I remember all too well the moment I first heard the news from my OB. My life changed in just a few seconds. Benjamin, my second child (and second boy), was only about an hour old. I was crushed and so lost. This was not what we had planned. This is not what we had wanted. The next few months were a blur. On the outside I was held together and accepting of the diagnosis, but on my bed I would cry and cry. My heart physically hurt.

    Open-heart surgery was at five-and-a-half months (VSD and ASD), and an unexpected intestinal surgery (to repair an obstruction) was at almost nine months. And while I loved my son, I was still having a really hard time with all of it. The questions of the future. Worries about development. Just the mere fact that I felt I should have been okay with it by now.

    At about nine-and-a-half months, my prayers were finally answered. I stopped crying every time the words Down syndrome came up. I started to see Benjamin as Benjamin and not as my son with Down syndrome. I started to *really* fall in love with him. His sweet spirit and unconditional love captured my heart.

    Do I still worry? Definitely.
    Am I still unsure about the future? You bet
    Do I still wish he didn't have DS and all the health and developmental issues? Yes

    But I know that God has completely changed my life with this little boy. In a way that it simply could not have been changed any other way. (God's funny like that...) My perspective has changed, you see. I am a different person. And without the Down syndrome, I would not have known the me I am today. And I would not have known Benjamin. And that is worth all the heartache we have and will experience.

    Feel free to check my blog for anything. I know there are a lot out there, but read as much as you can!!


  13. Hi Jenee and congratulations on your upcoming arrival! : ) I am so excited to follow this unexpected journey of yours - it's going to be GREAT!! It really will see.

    My name is Laurie and I have a ONE(!!) year old named Dylan, who has Ds as well as an almost 3 year old, Cassidy.

    Dylan also had an AV canal defect and had heart surgery at 4 months of age. Please let me know if you have any quesitons - I'd love to help in any way that I can.

    Anyway...take good care. Be kind to yourself...and patient. Hearing the diagnosis is certainly not easy - but after that, everything gets better and better.


  14. I want to add my congratulations, as well! Having a daughter is such a delight. We had three before having our first boy. Our third son, Eon, has Ds. He is 5 mos. old and such a cutie! He is adored by his siblings, parents, and family friends. He has thoroughly charmed the staff at our local children's hospital, too.
    I want to invite you to the Ds board at and the Ds pregnancy board there, too. It has been a wealth of information and support for me on this journey.
    I love that you already recognize the hand of God in the gift that you've been given! She will bless your socks off!

  15. Hi Jenee...just came across your blog as well. Looks like you need some words from the mother of a little girl:) Little Ella was born 3/29/08 with Ds. I, too, found out prenatally. There is much debate between all of us moms about finding out before they are born or not, but I vote for knowing beforehand. After the initial shock and tears, I was able to be excited for my little one again. I can tell that you have reached that place also. I know that everyone above has already told you this but you will be blessed beyond words. I remember people saying that to me and I started thinking it was such a cliche....but at some point after Ella was born, I realized that they were all right....I love her more than I could ever imagine and you will too!!! I look forward to following your blog and hope you will continue to use all of ours for inspiration. Can't wait to see the pics of sweet Kaitlyn.

  16. What a cute Blog. Congratulations on your baby girl. Cannot wait to see pictures of her. I have an almost five month old son that was diagnosed with Ds after he was born and he has been the best baby. Just remember she is your baby first and foremost and should be treated just like any other baby. I cannot wait to read more about her! Good luck with the birth.

  17. CONGRATULATIONS on your lovely Kaitlyn!!!. You will fall in love with her over and over and over again, every single day. All is well. I promise :)


  18. Congratulation on your little girl! Thanks for sharing your story! My youngest dd has DS, so does my neighbors 7 mo old. He had an ASVD, surgery at 2 mos. and is so big and strong now!