September 23, 2009

The Waiting Game




Yesterday the doctors determined that Rachel does, in fact, has duodenal atresia (common for children with Down syndrome). That is when the first part of the small bowel has not developed properly and it is not open and cannot allow the passage of stomach contents. Even though with her it was not completely closed and she was still having a trickle flow through, she would not survive as she is without the surgery. The doctors at the Women's Hospital told us she would be transferred to Winston-Salem Brenner Children's Hospital where her surgery would take place and that we would be called when that would happen. I was discharged from the hospital around 12:30 pm and went home. No sooner did we walk through the door did the Women's Hospital call to tell us to come back because Rachel was being transferred. Talk about a hectic rush to get items and get back to the hospital!




Once we got there, they loaded Rachel up in to their ambulance and we made the trip to Winston. Brenner's is a part of Baptist Hospital there and it is HUGE! We felt like we were at an airport. The NICU is very nice though and everyone loved our girl. The doctor that is taking care of Rachel and her surgery told us that he wants Rachel to gain another pound before surgery since she is too small and her organs are too small. He wants her to have a better chance at success. But this means she will be there for another couple months and we have a 45 minute to an hour drive to see her. We've signed up for a room at the Ronald McDonald House and hope to use it during the week when Stephen doesn't work. I know it will be very hard for him to go 3 days at work and not see his little girl. (as a P.S. please donate to the Ronald McDonald House. We never knew what they did until we were thrown in to this and they provide a wonderful service for those with ill children and babies.)




One bright note though is that Brenner's encourages holding and skin to skin contact with your baby. We were able to hold her for a half hour each last night. Today we'll wear clothes we can open in the front so our baby can feel our skin against hers. She is such a miracle. We love when she opens up her eyes to look for us when she hears our voices and the little faces she makes. One day she will be able to come home with us and that is what keeps us going right now.








16 comments:

  1. That is really wonderful that you will be able to hold her. She is beautiful miracle baby. -John

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  2. How dang sweet is she and how cute are those pictures!!! Mags & Stephen, I'm so excited for you guys that you got to hold your baby girl and that you'll have more holding/body touching time!! I'm sure the distance away from your baby will be hard for you guys, but look forward to the day when she can come home. Please don't hesitate to ask if there's anything that we can do, we'd love to help with whatever we can! Can't wait to hear another update and see more pictures!!
    Kylie

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  3. God bless you all. What a trial this must be for you. Little Rachel, hurry up and get big so they can fix that duodenum and you can go home to your puppies and nursery!!

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  4. Maggie and Steve,
    How wonderful it is to see the two of you holding your precious little one. It's a feeling like no other....awe, wonder and purest love.

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  5. Such sweet pictures of you and Stephen holding Rachel!!!! Glad to hear that she will be going through her surgery so fast, and that she'll soon be on her way to recovery. Hope you guys can get into the RMH!!!! I donate to them every year...I guess I just always thought about the one in Morgantown by Ruby Memorial Hospital.
    Keeping you guys in my thoughts and prayers.
    Amanda Daniel

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  6. Oh Maggie!! I am so thrilled to see you got to hold your angel.

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  7. please know that u and ur family r in my thoughts. u are a strong family and i hope the best for u. my oldest sister has Downs so i know a little not much but u can always talk to me if u need anyone. im on WTE as megbecca01. best of luck to u and ur family. she is a beautiful little girl u have

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  8. I am one of your ladies from WTE... I am enjoying reading your blog, and I want you to know that I am going to continue to pray for you, your husband, and sweet baby Rachel!

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  9. Maggie! I am so happy you got to hold your little Rachel today.. How wonderful is that!!??
    I also hope that everything goes well with her surgery! Thanks for the udpate!
    Love,
    Adriana

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  10. Maggie, it's wonderful that you get to hold Rachel every day. She is so beautiful and precious! I'm sorry that you have such a long drive time each day to see her (when you're not at the RM House) but hopefully it will be for a short amount of time and then you'll be able to bring little Rachel home. I hope you're recovering well from your surgery. Rich and I will continue to keep Rachel, Steven and you in our prayers and I look forward to the day when we're able to plan a play date with our little ones! Priscilla

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  11. MAGGIE AND STEPHEN

    I MET YOU AT YOUR BABY SHOWER IN ERIE. I CANNOT BELIEVE IN THESE FEW WEEKS EVERYTHING YOU HAVE GONE THROUGH. YOU BOTH ARE STRONG AND LOVING AND WILL MAKE GREAT PARENTS! I PRAYED FOR THE 3 OF YOU FROM THE MINUTE YOUR MOM (JUDY) TOLD ME YOU WENT INTO PREMATURE LABOR.

    GOD HAS A PLAN, SOMETIMES WE DON'T KNOW ALL THE ANSWERS BUT HE DOES!

    SHE IS BEAUTIFUL AND ALL THAT HAIR. SHE IS DEFINITELY A FIGHTER AND I AM SURE THE SURGERY WILL GO WELL!

    DEBBIE WOLFF

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  12. Your story is so intriguing to me... We lost our last baby, in February 2009 due to Trisomy 22. I am almost 23 weeks pregnant again and I'm having pre-term labor... so I just felt a connection with you because we had to prepare ourselves for the thought of having a Downs Baby... we didn't know it was Trisomy 22 until she died and they did an autopsy...

    Can I just say??? Your daughter looks beautiful and from all appearances, I would not be able to tell she had any facial features of Down's... I will pray for her to get through the next few weeks or so and pray she gains the weight she needs for her surgery... and I will also keep you and your husband in my prayers... as you will need them to endure...

    I'm also expecting a long stay in the NICU... so, I can appreciate what you are having to go through...

    I wish you all the best... and the best for baby Rachel Jane!

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  13. You and your family are so strong...i will continue to be praying for you all...quick weight gain for her! Take Care will be keeping up...(WTE:pbawife75)

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  14. Maggie, I'm happy to hear that you are now able to hold little Rachel.  She is so precious and adorable!  I hope you are recovering well from your surgery.  Rich and I will continue to keep you, Stephen and little Rachel in our prayers.  We look forward to the day when we can set a play date for our little ones!Priscilla

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  15. Maggie and Stephen, Your baby daughter is a little angel. She is lucky to have such loving and strong parents. I am so happy you are getting to hold her all the time now. I think it is the most wonderful experience in life! I am praying for your family. Stay strong. She is such a fighter, she will gain weight, have a successful surgery and be home before you know it.

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