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Evelina - wolfhirschhorn.org

HI! My name Antonella, my daughter Evelina was born on August 10th 2011 and I’m new to the website and want to share my story. I’ll give the short form of it to start.  Evelina has WHS with a deletion at the 15.3 4p chromosome.   I was 35weeks pregnant when the doctors decided to deliver Evelina via c-section because they thought she was not growing enough.  I did not have an amniocentesis therefore we had no idea we be having such a little miracle.  She was 2Ibs 15oz at birth and has IVH and PVL from being a premiee.  She has a cleft lip and palate, a small hole in her heart and a narrow pulmonary artery.  Evelina spent two months in the NICU and finially came home weighing 4lbs 10oz with an NG tube.  She has had her ups and downs, from infections to blue spells, reflux, brady’s and so on.  As she is growing she is has improved so much with all this.  She now turns her head from side to side, improving eye contact and discovering her hands.  She also will roll from tummy to back if she is on a small incline. She smiles but has only given me two giggles 🙂  On Jan. 18th 2012 she go a G-Tube.  WOOwHOO!!!! I highly recommend it.  She actually has been taking her feeds better orally since.  I’m not sure if its because she has no tube dangling down her throat or that we had her on iv for a week so she misses it.  She now weighs 8.2Ibls.  I am so blessed to have such a loving, affectionate child.  I love her with all my heart <3 I know she has a long road ahead and I will keep everyone posted.
May God give families challenged with the syndrome strength today and always

 

12 Responses to Evelina

  1. Carissa says:

    Antonella,
    Evelina is beautiful! Her eyes just melt my heart. My daughter is just 1.5 months younger than Evelina so I understand the ups and downs. I look forward to following your daughter’s journey.
    Blessings,
    Carissa (mom to Ava)

  2. Laurie says:

    Welcome to our family, Evelina (and Mom)~ you are a beauty! I look forward to learning more about you as you grow and continue to get stronger! xo

  3. KevinO says:

    yes, the eyes! Wow, she’s so cute. Welcome. Can’t wait to hear more!

  4. Heather says:

    your baby and her story are beautiful :] my daughter was born healthy 6 days after yours, and she still cannot roll over on her own, so it sounds like Evelina is doing quite well! the children on this website just melt my heart..congratulations on your beautiful addition mommy :] remember, God will always give the strongest people the hardest tests.

  5. Therese says:

    Cutie <3

  6. Kristy says:

    Hi Antonella and Evelina and welcome to the WHS family. Evelina is such a beauty! I look forward to following your journey and remember we are always here for you. 🙂

  7. LeeAnn says:

    Precious girl! Welcome to the blog! Nice to meet you two and look forward to hearing more. Evalina is improving very well it sounds like! She’s beautiful.
    -LeeAnn (Brodie’s mom)

  8. taylorbug says:

    Very beautiful!! It’s nice to meet you Antonella and Evelina. I can’t wait to see more pics and to hear more about Evelina.

  9. Leonie says:

    Absoloutely gorgeous. Sounds like she is doing really well, our kids are amazing 🙂 Welcome!

  10. Evelina says:

    Thanks everyone…glad to be part of the family. This site has helped me so much from day one. Thanks for all your stories (keep them coming). It helped me and my husband cope with all our emotions and questions when we needed it most.
    Anto 🙂

  11. vanesa says:

    Evelina and antonella Hello, you beautiful girl. I would give so many kisses.
    This baby has magic in his eyes. I also identify with her ​​because I have a hole in the heart and the excellent care of my mother I’m a very happy woman. I wish them well and very strongly that if you can!
    Many kisses from Argentina-Bariloche-Rio Black

  12. Letty says:

    I love her little lips!!! I remember when my son had his cleft lip. He had a little perfect heart right underneath his nose. He had bilateral cleft lip and palate….seems just like yesterday. Both sides of his lip was repaired at the same time-THANK GOD-when he was 5 months old. Now, you can hardly tell he had anything done.

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