I’ll begin McKenzies story at 20 weeks when we found out we were having a girl.  We were very excited to know that we were going to have one of each.  The ultrasound was diffucult because they said my dates must of been off because she was small and measuring two weeks behind, so instead of my due date being oct 4 it was oct 19.  My pregancy went great just like with Ayden I felt great.  I had another ultrasound at 32 weeks because the other one wasn’t so clear.  My husband and I sat in the room looking at the pictures watching the tech move around.  After my ultrasound I was scheduled to have a shot so I let them know that.  After my ultrasound I told my husband that he could head home because I didn’t need him to help me with the shot.  A nurse came into the room and said come with me.  She took me upstairs into a room in labor and delivery and told me to take all but my underwear and bra off.  I was puzzled, I asked her why I had to take these off to get a shot, she replied what shot I was told to put you on a monitor.  I sat there confused wondering what was going on and upset that they were going to make me miss my appointment.  After about 5min my doctor walked in and sat next to me in the bed.  She explained that I didn’t have much amino fluid and that the baby was measuring another 2 weeks behind.  She had this worried look on her face so I started to cry.  I asked if they would call my husband and have him came back.  The doctor than explained that she wasn’t positive what was happening and that she wanted me to go to another hospital about 45min away.  I  arrived at the other hospital and had many tests done, that all come back fine.  I remember the day we found out Kenzie had WHS like it was yesterday.  I was still in the hospital ( I was there about 2 weeks) awaiting for my mom to bring my son up to visit me and stay with me until my husband got off work.  My mom, grandma, and son came in with a balloon and  funny eyeglasses and nose mask on.  Right after that the doctor came in and said that she had  bad news.  She asked me if it was ok that everyone was in there I told her yes I didn’t want to be alone.  She then told us that Kenzie had WHS, a very rare chromosome defect that they didn’t know much about.  I just sat there almost in shock, I didn’t know what to say or do.  She gave me a handout she got off the computer that talked about all the possible outcomes.  I read it then put it down, it was too much.  I asked my mom if we could walk over to the farmers market I had to get out of there.  I was already having a hard time being away from my family especially my son, he didn’t understand and I felt like I was missing him grow.  It was only 2 weeks but it felt like years.  We walked over to the market,  I don’t remember what was over there or if we talked all I know is that I was scared.  We got back to the room and my mom and I decided she would take my son home so that I could talk to my husband alone.  I had about an hour before he would be up in the room.  I know I read the print out 10 more times crying each time more.  I then heard the door open my husband peeked his head around the curtain with a big smile and said where’s Ayden.  I asked him to come over and sit by me and explained what the doctor had told me.  We then called family members and explained what we could.   It took a couple of days to get the courage to look up more info.  The most encouraging info we got was from the blogs.  We got to see  families living with WHS, it made me see a ray of sunshine.  A couple days later I got to go home which made us feel better also.  I had appointments for the next couple of weeks.  We decided to go with a c-section, the doctor didn’t know how well Kenzie would tolerate labor and I didn’t want to risk it.  My husband and I talked about what would happen if she didn’t make it, because the internet and print out almost always said 1 out of 3 die before they turn 1.  We prepared ourselves for the worst, almost thinking she wasn’t going to make it.  We didn’t want to be let down, I guess this way we could only be let up.  That is what we were, on Sept.8 2010 Kenzie was born at 37 weeks.  She weighed 3lbs 7oz other than her size she didn’t have any complications.  She stayed in the hospital about 2 weeks then came home with a feeding tube.  Now Kenzie is 4 months old and doing well she hasn’t had her feeding tube for about 2 months.  She is gaining weight slowly but at least we are gaining.   Our first neurology appointment went well, we are seeing him again soon.  We have a cardiologist appointment at the end of the month which should tell us more about her hole in her heart and her other heart defect.  So far she is doing really well, I know that things could change at anytime, so we live for the moment.  I really appreicate the information and stories on here, it has brought me comfort.  Thank you for letting me share McKenzies story.

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6 Responses to McKenzies story

  1. Kristy says:

    Welcome McKenzie and family! I look forward to following your journey. My son Dylan, was diagnosed with WHS one week after birth. He is now 22 months old and our little ray of sunshine! If you wish to read more about Dylan’s story please feel free to visit my blog http://www.ourlittledillpickle.blogspot.com

    🙂 Kristy

  2. Hilary says:

    Hello! WOW, your story is so much like ours (here is our blog link if you are interested http://iwontweargrey.blogspot.com/). Magnolia is only 1 month younger than Kenzie. Magnolia also weighed 3lbs 7oz at birth. I would love to compare our stories. hilaryannl@yahoo.com

  3. cordillh says:

    Welcome to the group. I know it is hard to share your story, but many of us have similar ones and can support you through all of this. I have a 22 month old daughter with WHS who is the light of my world. She is absolutely amazing and I wouldn’t change a single thing about her. I hope you are able to get the support and friendship you need through this site. WE also have a blog, it is private due to our personal situation but would love for you to check Riley out. Send me your e-mail address to otmomtoriley@yahoo.com and I will add you to our list of viewers.

  4. Laurie says:

    McKenzie is a blessed little girl. I am only a year into this journey, and I can tell you that you will go through a myriad of emotions as you come to terms with the diagnosis. However, you will also become stronger than you ever thought possible, and you will have an amazing support system of moms and dads right here by your side to answer your questions, as well as offer you reassurance and support whenever you need it. I can honestly say that they are the most inspiring group of individuals I have ever had the fortune to meet. I believe that everything happens for a reason; only time will tell what the future holds for our children. In the meantime, they are loved by many…and that helps to ease the pain of coming to terms with the diagnosis.

  5. Welcome McKenzie (and family). Most of the little ones with WHS that we know are proving the limited internet medical research wrong! Praying McKenzie follows suit.

    Welcome to the WHS family. My daughter Norrah (2 and a half) has WHS and we have a blog for her:


  6. Leonie says:

    Welcome McKenzie ! Thanks for sharing your story 🙂

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