My name is Autumn and 4 weeks ago I gave birth to a 4 lb 13 ounce baby boy that we named Tyler.  I was induced at 36 weeks because of growth restriction that doctors thought was due to a 2-vessel cord.  After delivery he was immediately taken to the NICU.  Two days after he was born, the NICU doctor informed us he wanted to do chromosomal testing because of facial dysmorphic features.  A week later, we were informed of the 4p deletion and that he had WH.  We immediately got on the internet and upon seeing images of other children with WH I knew it was true.  Tyler had feeding issues from the start and was fed both by bottle and through the NG.  After the diagnosis they checked his heart (which was normal) and did a ultrasound where they found a small amount of fluid on his kidneys which he takes amoxicillin for daily.  We were originally told he would have to stay in the NICU until he could feed on his own but since now they were unsure how long that would take they gave my husband and I the option of learning the gavage and taking him home.  After deciding to come home, only 3 days we no longer needed to tube feed and he has been doing great with feedings ever since.  This past week we met with a genetic counselor who gave us more information on the syndrome and also took our blood to determine if either one of us has the translocated chromosome.  This past month has been a rollercoaster and I feel like we are finally on a path towards whatever our “normal” will be.  We found this site and it has helped us gain a level of understanding of what our lives may look like in the future.  We have laughed and cried reading your stories and looking forward to starting this journey with our perfect little guy who so unexpectly turned our lives upside down.

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7 Responses to Tyler James

  1. Laurie says:

    Hi Autumn,

    Getting the diagnosis is not easy, and I would be lying to you if I said that you won’t ever face challenges for Tyler in the future. What I CAN reassure you of is that there is an amazing support system of moms and dads who are here to encourage, love, and help you however we can. You can find me on Facebook– there is an incredible network of parents there, too. I look forward to getting to know you and your angel boy better… please feel free to reach out to me at any time! xo
    Hugs,
    Laurie Sedlazek-Hunter

  2. KevinO says:

    Hi Autumn, I am the administrator for the site and I am so glad you found us. Everyone here has been in your shoes at one point or another and it is definitely not easy. We’ve all learned to deal with what WHS has brought us and we have each embraced it in our own way.

    The community here is great and we are here to help. Reach out to us as often as you need to. Keep us posted on Tyler’s progress!

  3. Leonie says:

    Autumn, congratulations on Tyler’s arrival. Glad to hear he is doing well with the feeding. It definitely is a rollercoaster ride getting a diagnosis, but this community is an amazing support network. I dont know how I would cope without it. Cant wait to hear more updates on little Tyler and how you guys are getting on.

  4. Heather says:

    Autumn,
    Congratulations on the birth of your son Tyler! It sounds like his diagnosis came as quite a shock, as it did for most of us. It is encouraging news to hear that he is eating well. To echo what the other comments have said, the network of WHS parents is truly a great community. This website is wonderful. The 4p- support group http://www.4p-supportgroup.org/ is also great, and there are a lot of us on facebook. Feel free to look me up if you would like. -Heather Kirsch White

  5. Jill Hillestad says:

    Contragulations on the birth of Tyler. I understand the emotional rollercoaster you have been through. My son was born in December and was diagnosed within 1 week. He is thriving and doing great, this website is a huge help to my family. If you ever need anything feel free to reach out to me on facebook.

    Jill Hillestad

  6. Hilary says:

    Welcome! I’m looking forward to getting to know you and Tyler.

  7. Brianna says:

    I also am a new parent of a WHS child, Arin. While I know there are/will be challenges with her I am grateful for this site as they have shown me that there is hope and that she can lead a happy life. You can also find me on Facebook and am always willing to chat when on as long as all 3 children of mine cooperate… Welcome to the group and keep us posted!

    Brianna Horney-Hauck

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