We embarked the rollercoaster around week 20 of the pregnancy when our baby was found to be on the small side. My due date was pushed 2 weeks back to January 3, instead of December 22.

At week 30 we had another ultrasound and the baby was even further behind. I went for a level 2 ultrasound which confirmed the small size of the baby. I was sent to the hospital and had to undergo a test to determine if the baby will survive the labor. Our little trooper did excellent and I was released couple hours later. Nobody suggested we needed to have further testing done. They were just monitoring us closely. I had biweekly non-tress tests and ultrasounds. The amnio level was good, everything looked good except for the baby growth.

Since I knew my original due date was correct I was pushing for it and on December 22 I was induced. Denise was born couple hours later, 18 inch long and 4 pounds 14.8 oz. She was fine, and although she looked a bit strange, nobody suggested there was something wrong with her.

The pediatrician on staff said something like “Best things in life come in small packages” which soothed me at the time.

I nursed Denise for almost 2 months, and those were the most challenging months in my life. She would suck for a few minutes and fall asleep. Then wake up 15 minutes later to want some more. I found myself breastfeeding her every 15-20 minutes day and night, it was exhausting, but I was determined to make it work. It didn’t, and when she was about 6 weeks old I started pumping and giving her the bottle. This worked a little better. She was gaining pretty well at the beginning – 1-1.5 pounds per month. It soon came time for me to go back to work and put her in the hands of a babysitter.

When Denise was 6 weeks old and not yet making eye contact, leave alone social smiling, I asked our doctor about it. He answered that this will all change by the next time we see him (in 2 months). By that time she had started smiling every once in a while, but not at all like her brother was at that age. She had started vomitting and refusing her bottles. When all my concerns were again dismissed we decided to switch to a different pediatrician.

And here’s when it all hit. The new pediatrician was really concerned with her not gaining at the time and wanted to run tests to check on her metabolic rate, see if she was having celiac desease or lactose intollerance. All tests came back ok and he wanted to do some genetic testing. He didn’t say if he had any specific concerns, although now I know he did have them.
We did the test. The initial one came back ok and we were only waiting to see the result from the microarray. By that time Denise was consistently not meeting her milestones and we were referred to Early Intervention for evaluation.

When Denise was 9.5 months we got the call with the diagnosis. I still remember that Tuesday afternoon. My phone rang while I was in the car on the way home from work. I got the news while driving and I heard the doctor say “I’m sorry”, but I didn’t fully comprehand what he was telling me. There was something wrong with my baby and they knew what it was. “Wolf-who?? Is this going to prevent her from having a normal life??”, to which the doctor said “We don’t know. It is going to be a long learning process for both you and me.” I got so mad at him then. How dared he say he didn’t know!!! He should know that my child is going to be well and healthy and is going to have a normal happy life! I would see to that.
Then I stopped my car at a store parking lot and called my husband. We both cried, even though we didn’t know anything about WHS. I dreaded going home. I dreaded turning the computer on and googling it. I knew it would not be pretty. And it wasn’t. You all know that. But before I could stop myself from reading and searching and reading some more I read enough to be devastated. I couldn’t look my baby in the eye, for I was feeling responsible for what she had.

Now, we are changed. For the better. Denise is doing excellent. She has delays but she has her therapists and us to help her with them. She is 2 years old. She began sitting independently around 11 month;, she started crawling few months later, she did the army crawling for the longest time until she switched to hands and knees; she took her first unassisted step around 20 months, and couple months later was walking on her own. She has 4 words in her vocabulary – mama, tata, am (for when she wants to eat) and the most recent one is something similar to “this”. She uses that all the time as a question while pointing at things.

She loves to draw. Everywhere – paper, books, furniture, clothes, walls, you name it. She loves her books, and she loves music. She loves her brother and immitates him constantly. She loves to try new food and even though feeding is still a struggle and sometimes a fight she is curious and tries – even garlic. I wish I had a picture of her face when she tried it 🙂

She does not have many medical issues. She has stage 1 kidney reflux, she has a smaller pulmonary valve and those are issues that are monitored, she used to have acid reflux and be on medication for it, but she’s no longer having issues with that (Thank God) and is enjoying her food more and more. She is slow to cut teeth. She had a febrile seizure couple months back, hopefully her one and only.

And she has to be billingual, since our first language is not English. I still don’t know how this will come about, but I am optimistic.

I keep a blog for our family, and even though it was inspired by Denise and the things we learn from her I try not to dedicate it solely to her, but to us all.
Here’s the link in case you want to check it out. Bulgarian or not:


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5 Responses to Denise Joins the Crowd

  1. Leonie says:

    So nice to hear your story and meet your little Denise. I thought she looked familiar, I had come across your personal blog previously but of course I couldnt understand the different language. She is doing phenomonally well by the sounds of things. Gives me so much hope for my wee Sabrina 🙂

  2. Laurie says:

    Denise is a gorgeous little girl~ every time I see a picture of her, I think to myself that I hope that Kaylee grows to do as well as Denise seems to be doing. xo

  3. christy shields says:

    Denise is so precious! Thanks for sharing your story. I have just recently joined this site and it just brings so many smiles to my face to hear all the wonderful stories. I have never heard so much good news about WHS until now. This site is hope to all parents that have kids with disabilites.

  4. LeeAnn says:

    Denise is doing so good! Her pics are so adorable. Glad you shared the update!

  5. This story reminds me so much of our own! I love little Denise and am so proud of all that she has accomplished. 🙂

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