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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

Read more about us and this blog...

Here's our summary of our best and most important posts of 2012.

Life with Ichthyosis: A Harlequin-affected Mom’s Pregnancy

Our guest today is Stephanie. She is the author of the blog “With Faith That Will Move Anything” and the YouTube vlog of the same name.

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On April 11, 2012, I married the man of my dreams. He was cute as could be with dimples that made my heart melt and gorgeous brown eyes. He made me laugh endlessly and had a heart bigger than you could imagine… I fell completely in love with him from day one!

We got married, he got a new job that paid great and we moved into our first apartment, just our puppy and each other. A husband who went out and made a living and a stay-at-home wife, young and completely in love. What else could we want? A baby!

We talked about it quite frequently but never made any big decisions right away because I was born  with Harlequin Ichthyosis and no one really knew how my skin would react since having this disorder meant it would be almost impossible for my skin to stretch to the extent needed to have a baby. Plus I lose so much nutrients through my skin to begin with, would I really have enough to keep me and a baby healthy?

Curt and I talked to each other, our families and doctors (who all admittedly knew no answers to our questions seeing as how I’d be the first H.I effected woman in the world whose gotten pregnant.) . But most importantly we talked to God, we prayed nightly for guidance and for God to let whatever he wanted to happen, happen. We both felt the risks were worth it for the chance to have our own little miracle in our arms one day. After all, I’ve never let anyone or anything stop me from doing what I wanted in life. I was a cheerleader for four years, homecoming maid for four, a girl scout, I hunt, I fish, I go to high school football games, to the lake, I ride four wheelers. I’m not much on excuses when it comes to my skin. I’ve lived a completely “normal” life, why stop now?

We took the steps needed in order to get pregnant. I was so nervous seeing as how I had been a little on the wilder side during my senior year and right after high school and I done things I’m not so proud of. Fortunately, I never got pregnant. Even though I’m beyond glad I never got pregnant then, it still made me wonder if I even could. I had a long term boyfriend at one point. We got pretty serious and he repeatedly made comments about me not being able to have a baby because of my skin. Was that true? How would my husband feel if he married someone who couldn’t make him a daddy? How would I be able to deal with it?

Month one started- I downloaded a fertility app for my phone, kept track of my days and prayed like crazy. As it got closer to my time of the month, I worried more. I was sure it wasn’t going to happen that month, how many people get pregnant the first month of trying? WE DO! A week after being late on my period, I took a pregnancy test- or 7 – and on September 21, 2012, our lives changed forever. Curt and I found out that we were going to be mommy and daddy!

stephanie HI pregnancy copy

We were ecstatic but so terrified! I found out at 3 weeks (early!), I immediately started taking prenatal vitamins and eating healthy. At 9 weeks we went to our first doctor appointment at a high risk OB/GYN to see our healthy little baby.

I gained 11lbs within the first 2 ½ months. I applied (then & now) baby oil gel on my belly every night and along with my daily routine of applying Aquaphor all over my body after my morning bath.

I weighed in a few weeks later and I was losing weight! It  scared me. What if my baby wasn’t getting enough? What if I wasn’t? I had to stay healthy or my baby wouldn’t be. The doctors said it may have to do with the fact that I cut way back on drinking sodas, calories from them are ridiculous! I had replaced Coke with healthier foods and I was told to snack constantly to keep my weight up. It seemed like no matter how much I ate, I never gained weight. Luckily my baby remained healthy.

Everyone was expecting at least a few complications with my skin stretching, especially since I was already “showing” at 7 weeks.  My boobs and belly grew rapidly! Here we are at 26 weeks today with only 14 more weeks until my due date- May 24, and I have yet to have had the slightest problem with my belly stretching.

The only complication that I’ve had at all so far is my feet, legs and hands swell unbelievably fast… Or try to. My skin does have a hard time stretching with the swelling which leads to pain. The doctor said it was very normal and would only get worse so keep my legs elevated and move them around to get my blood circulating.

Everything else is going wonderful! I’ll be holding my baby boy in my arms in a few short weeks. As of 2/11/13 Mason Drake Turner weighed 2lbs and measured a week ahead of what he was supposed to be! We also realized that he’s getting everything I eat. I lost 2lbs, but he gain a pound all in a month! But we’re both very healthy and I’m not complaining about not gaining weight as long as I’m healthy!
Baby Mason, 26wks

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We are not doctors or medical professionals. A doctor or nurse looking to confirm or consult on a diagnosis of harlequin ichthyosis should immediately contact FIRST, the Foundation for Ichthyosis and Related Skin Types because time is of the essence and specialized expertise is critical in caring for a newborn with harlequin ichthyosis.

Part 1: Life with harlequin ichthyosis: The basic science behind harlequin ichthyosis
Part 2: Life with harlequin ichthyosis: Newborn Surprise
Part 3: Life with harlequin ichthoysis: In the NICU
Part 4: Life with harlequin ichthoysis: Going Home
Part 5: Life with harlequin ichthoysis: Ups and Downs in the First Year
Part 6: Life with harlequin ichthoysis: Toddler years
Part 7: Life with harlequin ichthoysis: Starting Elementary School
Part 8: Life with harlequin ichthoysis: The Downs of Middle School
Part 9: Life with harlequin ichthoysis: The Ups of High School
Part 10: Life with harlequin ichthyosis: Moving Past School
Part 11: Life with harlequin ichthyosis: A Harlequin Pregnancy  <–You Are Here

 

10 comments to Life with Ichthyosis: A Harlequin-affected Mom’s Pregnancy

  • Donna antrobus

    What a beautiful life story, good luck with your baby xxxx

  • Congrats – you are beautiful :) I, too, am expecting my first son, May 25th. He will be my 5th child though. I will pray that God continues to hold you in His hand as you continue to grow as your son does.

  • Sue in Maine

    Hi Stephanie, congratulations and I’m sure you’re going to be a fantastic mom. You’re beautiful inside and out, girl. Keep those legs elevated and keep dreaming of the day you hold your son for the first time, and of all the decades and decades of memories with him. Be well.

  • Carolina

    Hi Stephhanie!!! Congratulations!!! you are beautiful!!! Keep the legs up!! drink a ot of water and enjoy your pregnancy! i Have ichthyosis too and i have my daugther clear she is a healthy and wonderfull girl!! so Enjoy your moment and when your son wi stay on your arms kiss him from me and remember you are the best!!!….
    Carolina

  • Linda Dean

    Faith goes a long way

  • You’re glowing :) very exciting for you!
    Thank you for sharing your story.

  • Mary Kyle

    Steph, I am so proud of you!!! You are an inspiration to all the young adults today. I can’t wait to see “little bit” and you have your family complete. I Love you!!!!

  • Nicole Hankins

    Steph your the strongest woman I know! I’m so grateful to call you family! I know God has special plans for you. I can’t wait to meet Mason! It is just amazing to see God work! Love ya

  • Donna

    I have always been proud of you. I am very excited for you and BIGBOY! You both have the most loving hearts I have ever known. You were sent to me straight from God and now God has given you your own little angel. I love you, baby.

  • Krush

    Hello, I have come across your amazing story, which is incredibly inspirational. I have a milder form of ichthyosis, with no previous history in my family. My husband had quite severe excema…I have always worried about having children of my own, with fear of passing on my condition. Coming across your story has given me hope. I still feel so scared, and don’t really know where to turn, I would hate to pass on the suffering that people face with this disorder. You must be so proud and so happy, I can only hope to be so fortunate. Thank you so much for showing us how positivity has pulled you through and thank you for sharing your story. I hope you and your lovely family are doing well. I’d love to hear from you and learn more! Kindest wishes and massive congratulations.

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