Ok so I guess it’s time to introduce my daughter to the community. I have been reading posts and information on this site since my daughter was 10 days old and we were told about her condition. I have gone back and forth between using this site to help me cope and wanting to cope on my own and letting Olivia develop as she may. However, in recent weeks I have been frustrated, emotional, drained, hopeless, and many other things. So I decide that it would be best for Olivia and myself to join this wonderful community of people.
From the time Oliva was diagnosed I have wondered why this happened to me. I waited a long time to find the right guy, get married, and then have a child. Since I was little I always wanted children and my journey to obtain that wasn’t all that easy. I found a great guy. We married and tried to start our family right away. It took a little time and I was patient. Remember all I ever wanted out of life was to raise my own children. Throughout the pregnancy everything was said to be fine, that is until my 32 week ultrasound. At this time my baby was said to be small in her limbs for her gestational age. I went weekly for ultrasounds, stress tests, and such to keep an eye on the baby. Doctors were optimistic saying that she was most like just a small baby. We planned a c-section on her due date to to the fact that she was breech.
Olivia was born May 24th2011. As a mother, I always had this nagging feeling from week 32 on that something was wrong withmy child. I cried when they delivered her. The nurse asked if they were tears of joy. I was too upset to say anything. That nagging wasn’t nagging anymore, I knew something was amiss with my little girl. I delivered her at 4:44p.m. and was not able to see and hold her til 2:30 a.m. She had be in the stabilization room while the doctors tried to stabilize her. She was then moved to the NICU. While there the hospital staff told us of their concerns for her. The mentioned physical characteristics that they were concerned about but their was not mention of what she might have. A day and a half later she was transported to Children’s Hospital. There she was put on a feeding tube because she did not have a suck and showed no interest in eating. She spend 10 days in the NICU while they did all these test on her. Finally we had our family meeting where we were told she had a genetic condition known as Wolf Horshhorn. We were told the grime details of the diagnosis and given a hand out on the syndrome. The odds were not good for our little girl. At that time I decided I didn’t care what that article said. Olivia is Olivia and she will do all that she is capable of.
Olivia is know 9 weeks old and doing great. She is more alert know and when she is I place her on the floor. She loves to swing her feet and hands. A few weeks ago her feeding tube came out and we decided not to put it back in. Maybe I should give a little background. Before we left the hospital we saw a speech therapist who said it was dangerous to try and feed her at home from the bottle because she would forgetto breathwhile she sucked on the bottle. By then she had somewhat of a suck. So we left the hospital withthem thinking we weren’t going to bottle feed her. Anyway, my thought is how is she going to learn if not given the opportunity. So we bottle feed her whatever amount she would take. Now don’t get me wrong, I would never put my child in harms way. I am like a hawk when she eats, and no one else feeds her but me. Anyway, when the tube came out, she was eating between 2-3 ounces, but it would take her a long time. So we decided to leave the tube out. She spend 3 weeks with the tube out. Then we went to she the feeding time. She is said to have slow weight gain. They suggested 24 calorie formula and said she had to eat at least 560ml. Well it is a struggle to get her to eat even close to that, so the tube went back in. It took a couple days of constant struggle to decide what was best for her, and putting the tube back in is best. So now we are back to eating from the bottle first and then putting the rest in the tube. Our problem now is I think the amount they want me to feed her is too much for her. She gags sometimes and then vomits. I’m at a loss as what to do for her. Her doctors don’t know much about the syndrome, all they keep saying is she has to gain wieight. Well she was born 8lbs 1oz, lost more the 10% in the hospital, left the hospital at 7lbs 8ozs and weighs 9lbs 14 ozs now. I dont know what to do. We just try different things and hope it’s not doing any harm.
Olivia has done a lot in her 9 weeks of life. She has been to the shore, seen her first fireworks show, went swimming, and will be spending a week in Myrtle Beach.
I have many goals for my daughter and believe she can reach her full potential if pushed. We are currently waiting on Early Intervention to assign her a therapist. I can’t wait for her to be able to hold up her head. She gets very frustrated with tummy time now, but we still try every time she is awake. I told her we will get her ears pierced when she can hold up her head.
She loves listening to music and hearing her dad play the guitar. She recognizes her mommom and enjoys listening to her tell stories. She has a stubborn personality already and is somewhat fiesty.
I am glad that I had a place to tell my story to people who actually understand what I am going through. We have the support of family and friends but no one really understands unless they go through it themselves. So thanks for listening and as soon as possible I will post pictures of our Olivia

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10 Responses to Olivia Grace

  1. Kristen says:

    Hi. Welcome. Open arms here. I’m glad my letter touched you. I hope you have also found some of our personal websites like ours: http://www.alittlesomethingforme.com
    Alexander is only 14 months old. I can tell you this – last summer… was a complete blur for me. I was a wreck. Sometimes thinking things were ok – sometimes depressed out of my mind. This summer seems like sunshine and rainbows – so don’t give up on the happiness returning. I would also recommend to anyone – a little medication never hurt 😉
    About the feeding tube… everyone has their own opinion about those. We had it in and didn’t use it for a long time. We were also given it at birth and felt Alexander could do without it during the day. I will tell you this – a lot of nutritionists talk “catch up calories.” that is bologna. Most kids with WHS ARE small. Alexander is 14 months and doesn’t weigh 11 lbs yet. And that is ok. I would say to any mom who has a kid who wretches and vomits because of so much food (you know what I mean…) = to try a little less and watch the weight. We always calculated Alexander’s to be about 125 calories / kg. Some kids need more, some kids need less. (Trust me, other parents have completely different opinions about this!) Alexander only gains about 2 oz a month… and that is ok. He is healthy. And he eats. Lots. We tube feed him at night. Good luck. Look at some of the older blogs from our individual sites – you will find posts that just ring true. Trust me. Love, Kristen and Alexander

  2. Ilse says:

    Dear Olivia’s mum,

    Reading your story brings back a lot of memories. Our daughter was born with a cleft lip and palate, which caused feeding problems. She could drink a little from the feeding bottle, but got most of her milk via a feeding tube.

    The pediatrician told us to give her more formula than one normally would. Because WHS-childern have trouble gaining weight and growth helps both mental and psychical development.

    I couldn’t be more sorry for doing that. Our daughter could not process this amount of milk. She started vomiting excessively. And (this was most painful to us) she felt really unhappy. She didn’t want to drink from the bottle and eventually started crying when she saw us bringing the next bottle. Since then she can’t drink anymore and gets all her formula via a g-tube.

    It took us some time to be confident enough to stop listening to the doctors and start listening to our hearts. But since we give our daughter what she can handle instead of what the doctors said, she’s happy again.

    This was a very painful period. Knowing that your child is unhappy is killing a parents feeling. So my advice would be: listen to your daughter and to your heart. Doctors say what the books tell them, but our kids are special. So please try to treat them that way!

  3. Laurie says:

    Your story brought me back to January 16, 2010-the day my Kaylee was born. I had…and still have…fluctuating emotions about the syndrome. Like you, all I ever dreamed of was having a baby girl. I did 12 years ago, and she is cognitively impaired and Autistic. I had a son 3 years ago but was never more over the moon than when I learned that my last baby was a girl. It was my dream come true- a second chance. My doctors also reassured me that she was probably small; news of the syndrome all but killed me and my spirit. I know it is hard now, but it does get easier. I keep a private blog; if you would like to be added as a reader, just let me know and send me your e-mail. You are definitely not alone. Feel free to reach out to me anytime: laurie1878@yahoo.com

  4. Laurie says:

    I saw that you posted a comment to Chrissy about NJ…are you from NJ? I live in Jackson, and so does Mason’s mom. Chrissy lives about 45 minutes south of me. E-mail me if you would like to get together or chat! 🙂 laurie1878@yahoo.com

  5. cordillh says:

    It is nice to meet you and Olivia and I’m glad you decided to join this site. The support that can be given by other families is priceless. We have a two year old named Riley and she is amazing. Times in the beginning can be frustrating, but things will get easier. Feeding has always been Riley’s biggest struggle too. She would only take 2 oz until she was 10 months and then got a g-tube. It would easily take an hour to get those 2 oz down. Our kids gain slow no matter how much or how little they are getting. Olivia is a very good size, Riley was 9 lb at 9 months! Use the WHS growth chart and stick to your gut.

    By the way, where do you live? I saw you went to Myrtle Beach, we live a few hours from there in Beaufort, SC.

  6. Heather says:

    I’m glad you decided to plug into this group. The support and information here is wonderful. My son (Frank) is 20 months old now, and he is doing well, and so am I. You mentioned feeling emotional, drained, and hopeless lately. I can certainly empathize because the first few months were really, really rough for me too. So much so, that I had a tough time bonding with him initially, but I’m doing so much better now and can’t even look at him without a smile coming to my face.

    It sounds as if your daughter’s weight gain is pretty good. Really any weight gain is good, no matter how slow. Doctors will tell you it’s not “enough” or the weight curve isn’t steep enough. But really, it’s just not in their nature to grow fast. It’s a radical change in mindset, but once you get used to that idea, then you will start to feel much more relaxed.

    Feeding tubes are necessary for some kids who are not gaining ANY weight and/or are dehydrated from lack of fluids, but if your child is consuming and gaining slowly, then a feeding tube may really not be necessary. Everyone in the community has an opinion on this subject, and there are WHS kids with and without feeding tubes. Although a lot (most?) doctors will push for one, you’ll have to make your own decision, but for what it’s worth, we did not do a feeding tube for Frank, and we have been happy with that decision. He is 20 months and 15.5 pounds. He bottle feeds using a formula called Vital Jr recommended by his nutritionist. He is healthy and alert.

    I hope that you are soon feeling better about your daughter’s development, but even if you’re not… that is OKAY!! We are here to listen to how things are going for you and your family, whether good or difficult.

  7. Kristy says:

    Hi, I am so happy that you shared Olivia’s story. It sounded so much like mine. My son Dylan is 2 yrs now and I had a “normal” pregnancy but they thought he was just going to be a small baby but told me that everything else looked just fine. I completely understand all the emotions you are going through because I went through it too. It was very hard for me in the beginning but it does get easier. Dylan was born with a cleft palate (that was repaired when he was 10 months) so sucking was always difficult for him but he does not have a feeding tube. He has always been slow to grow and I have had doctors in the past talk about a g-tube because of the slow weight gain but for now I don’t think it is necessary for him. He eats and drinks great. He eats all soft table foods and drinks from a cup. What I have found is that most doctors have never heard of WHS and don’t understand the syndrome. I always make sure to bring a WHS growth chart to all new doctors to show them that Dylan is in the 75% for height and weight! He is currently 18.5lbs and 31in. My advice for you is to follow your heart and do what you think is right for Olivia. Never give up hope and she will amaze you. Hugs to you. 🙂

    I keep a blog for Dylan, please feel free to check it out.

    Much Love,
    Kristy
    http://www.ourlittledillpickle.blogspot.com

  8. Brianna says:

    Welcome to the group. My daughter Arin is 4 months old and weighed in today at 8lbs 10oz. She got the G tube 3 weeks ago and I am absolutly thankful that we choose to do it. She is doing so much better now that she is getting the proper nutrition. You can follow Arin’s story at http://www.caringbridge.org/visit/arinhauck. We live in Delaware and I am on Facebook to chat at anytime.

  9. shirley bidnick says:

    Congratulations on baby Olivia Grace. Thank you for sharing your story with us, and being honest about your feelings. Coping on your own is not a good idea. As human beings, we are better together. There is so much we can learn from each other. When I need to make a decision, I like to listen to what others have to say first, then I feel prepared to choose what is best for me. We were never meant to independent. That is the most important thing a dependent child taught me.

  10. Anonymous says:

    I fell so bad for all of you ladies.

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