Moving the surgery up

July 28th, 2010

We called Dr. Chowdhury’s cell phone this afternoon to report that Verity’s condition seems to be worsening rapidly enough that we don’t see how she can wait until next Wednesday for the repair.

She’s not waking up, hasn’t taken anything by mouth for over 24 hours, and her breathing continues to grow more labored and uncoordinated, with skipped breaths.  She is running out of energy to breathe or cry properly, and just gives a weak cry every so often.

The Dr. will be having a conference with the rest of the team tomorrow morning, and will discuss moving up the surgery.  She asked me to call her at 9 AM tomorrow.

We can see God’s hand working in every detail of the timing, and we are confident that HE is the One in charge, not us, and not the doctors.

It is wonderful to be able to rest in Him!

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48 Responses to “Moving the surgery up”

  1. Jennifer says:

    I feel so bad for Verity, having to struggle so much. Praying and hoping you can get the surgery sooner, so she can get better. ((Hugs))
    JenK from momys

  2. Ruth Einfeld says:

    Praying for a speedy resolution, and for peace in the meantime!

  3. Erin says:

    We are praying here! Verity, the family and team of doctors are on my mind tonight. Not that you have tons of free time but, let me know if a nap nanny would come in handy for your family.

  4. Wanda says:

    Praying so hard for god to heal her precious body and praying for you and joe and all the children!!!!!!!! Please let us know if we can do anything Susanna. We love you !

  5. Maria (assistantcoach) says:

    Continuing to lift you all up to our Father.  (((HUGS)))

  6. jennifer76 says:

    praying Susanna!

  7. Aunt Carol says:

    Am praying – and praying – and praying.

  8. kris says:

    I started reading your blog a few months ago when my long time friend found out she had a 1 in 5 chance of her daughter being born with Down Syndrome. Her daughter was born on July 6th and she does have Down Syndrome. Luckily she doesn’t have any heart problems, I check your blog daily for updates and I really feel for your little girl. I really admire your strength and I think your daughter is beautiful. Reading about her struggling to breathe is heartbreaking. I look forward to reading about a successful heart repair. I wish only the best for Verity and you and the rest of your family. Take care.

  9. Adrienne says:

    Praying for little Verity!!  My son Bennett had the same heart defect so I’ve been there as far as the surgery goes and of course he has DS too.  I hope the doctors are able to do this much needed surgery for your little girl soon!

  10. Adrienne says:

    sorry, left the wrong blog address.  Also Bennett was just 11 weeks old and only 10 pounds at the time of his surgery so he was little as well and did very well.  Your daughter is precious and I look forward to following along.

  11. Rachel says:

    Praying for Verity!!!

  12. Kimberly says:

    I am keeping your sweet verity in my prayers.
    My dd had heart surgery at 1 day old, and again at 1 year old, and again at 2 and a half. Early on in our journey I found a book at our local bookstore called “A Special Gift – A devotional for Mothers of Children with Unique Challenges” by Carrie T. Gruman-Trinker  It has been my go to book as I needed a little comfort and I have marked a page in that book as one to read as I release my daughter into the arms of doctors, nurses and surgeons.  It starts with this verse from Isaiah “He will feed His flock like a shepherd; He will gather the lambs with his arms, and carry them in His bosom” Isaiah 40:11
    It then goes on to talk about the picture most of us have seen of Jesus holding the littlest lamb in his arms and tells us to picture that lamb and give it our child’s name. It then shares how special each on these unique little lambs are to Him and how he holds them close. This is the picture I hold in my heart each time I know I have to let her go into the care of someone else. I picture her in His arms and now that he is closer than I could ever be!
    Here is one of my favorite quotes from this section of the book “Do not worry mother, if your special lamb is not in your care right now. She is in the arms of the Good Shepherd. Do not feel guilty when you need respite from the struggle. When you leave your child in the care of another, one set of arms is always present-those of the One who loves your baby more than anyone ever can.”
    I am leaving for a trip with my family, but I felt the need to share this with you tonight. I hope that it in some way is helpful to you for the coming days. You and your family and especially your beautiful Miss Verity will remain in my thoughts and prayers!

  13. Robin says:

    Praying for Verity

  14. April Hardwick says:

    Praying.

  15. Jennifer says:

    Praying for sweet Verity.

  16. Marci says:

    {{{{{{{{Susanna}}}}}}}} My dear sweet friend.  My prayers are with you and Verity and the family.  May God give you the grace and peace needed to sustain you through this hard time.  May He guide the doctors in doing exactly what Verity needs.  May God be glorified in ALL of this.  Wish I could give you an IRL hug.  Much love…

  17. susan wiker says:

    I just read through the entire blog – your sister Lynn posted on FB about the baby.  A group of friends have a intercession prayer ministry called “CHARIS”. When I am finished this I will alert them to your need of prayer.  The following came to my mind – a chorus from Casting Crowns.

    And I’ll praise you in this storm
    and I will lift my hands
    for You are who You are
    no matter where I am
    and every tear I’ve cried
    You hold in your hand
    You never left my side
    and though my heart is torn
    I will praise You in this storm

    WE WILL HOLD YOUR HANDS UP as Aaron and Hur did for Moses.
    We are honored to be part of this precious little girls life.
    Blessings,
    Susan Wiker

  18. Aunt Mary says:

    My heart is heavy for Verity and your family tonight. I too will be lifting your needs up in prayer. Rest in His Love.

  19. Danielle says:

    Susannah and Joe,
    Joel and I were so glad to meet you and please know we are keeping you in our prayers.  The children have been praying for baby Verity also.  I pray that this surgery is a complete sucess and God uses it to restore precious Verity to health.  Please let us know of any need you have.  We are pretty near the hospital.  I will try to pray for you with each feeding Luke gets :)
    With prayers and hugs
    Danielle Madison and family

  20. Joy Horton says:

    Praying continuously and trusting His loving and able hands along with you.

    (((((((((((((((((big tight hugs)))))))))))))))))))

  21. Denise says:

    Susanna–

    Words escape me– my heart is heavy — we are praying– day and night we are praying for Verity and EACH one of you…….

    ((((hugs))))

  22. Carrie says:

    Just found your blog–we will be praying for Verity here!  My little lady had the same heart defect and surgery about a year ago–what a blessing modern medicine is!  I will pray that all goes well and that you will feel peace and comfort.

  23. Michelle O says:

    We’ve been praying for Verity and your family often. Thankfully, everything is in God’s hands.

  24. Marilyn Osborn says:

    Oh, sweet friend…..I’m weeping for you…I KNOW our Lord is faithful and I KNOW He is carrying you through….I just ache for your mother’s heart.  Praying for sweet Verity and your whole family.  May He continue to be GLORIFIED through this precious child.  Love you dearly…Marilyn

  25. Janns says:

    I’m thinking about you and praying often for you, Verity, your whole family and the doctors. Jessica

  26. allison (christianmomoflots) says:

    Praying for sweet precious Verity.

  27. Shannon says:

    Praying for Sweet Verity and your family and for the dr’s to have wisdom.  
    Blessings, Shannon

  28. Sheena says:

    Praying for Your sweet family! Continue to Lean on Christ!!

  29. Bethany says:

    My heart ached for you as I read about your situation.  I don’t doubt your unconditional love for your daughter or her value of pure gold in the eyes of God.  There is something invaluable about the innocence and unconditional love of Down’s children (and adults).  My heart only aches because of the difficulty you must be experiencing watching your baby suffer and experience pain.  I cannot even pretend to understand.  I pray that God will spare your beautiful daughter’s life so that she can bless others for the entire span of her life.  In my close extended family there is a member with downs syndrome and we wouldn’t trade him for the world.  He is precious.  His love for God is more pure and noble than any “normal” person i’ve known.  May God be with you and give you peace in this time.
    your sister in Christ,
    Bethany (mother of two)

  30. Misty says:

    You came to my heart during prayer tonight at church so I prayed for you and then when I came home I saw your latest post.  ((((HUGS)))  Praying for you and Verity (and the Dr’s)!!  May God give you HIS strength, grace, and help.  He is truly the great physician and can do exceedingly great and wonderful things.
    Blessings,
    Misty (MOMYS)

  31. Betsy says:

    Joe, Susanna, and children,
    Lamentations 3:21-24
    Praying God’s Perfect timing and continued Peace for each one of you.  
    The Lord Bless you and keep you in the hollow of His hand,
    Betsy 

  32. lisa says:

    Hi,
    I read your blog for the first time tonight when a friend posted it on fb.  My oldest son experienced a lot of what your precious little gift is going through right now.  I believe it changes something in the heart of a mamma who has to watch their baby suffer like that.  Hang on to Jesus as tightly as you can  and hang on for the ride.  He is faithful. 
    praying for you,
    Lisa

  33. Mamakelly, from Momys says:

    Susanna,
    He is right there all the way through the Valley of the Shadow of death, and beyond.  Let your mind rest in His love even if your body can’t- that is the way I find”rest” even when it is impossible.   I don’t find time to comment much but your family is very much on my heart.
    Kelly

  34. Patti says:

    My husband and I just prayed again for Verity and for your family- we will continue to do so in the days ahead. Hugs and love.

  35. Stephanie Blanchard says:

    Susanna, it’s so hard for me to read about Verity’s decline… I have tears rolling down my cheeks so quickly I cannot see the tiny screen on my phone. Know that we are continuing to lift you in prayer. I wish I was close enough to hold your hand when she is in surgery. (((Hugs)))

  36. Brandy says:

    Praying all day, Susanna!

  37. Ashley says:

    I think of you all and Verity often. I read many of your posts … it’s hard to comment. But I am praying!!!!

  38. Tracy says:

    Praying and trusting with you, dear friend.

  39. Jasmine says:

    I am new to your blog and felt prompted by God to tell you to lay your hands on her and speak her name.  Speak truth to her; speak the word of God to her.  My baby almost died three years ago.  I know how difficult this can be.  I sang to her, read to her, and layed hands on her every day.  She is with me today.  God is faithful.

    Shalom.

    I’ll be praying for you and your family

  40. Jerri H. (my7blessings) says:

    Praying for God’s strength, peace and comfort today and in the days to come!!!  He is with you and will carry you all through this.  Thank you SO much for sharing precious Verity with us!! 

  41. Lora says:

    Praying for your sweet little Verity. 

  42. Sabrina says:

    Susannna, praying for dear sweet little Verity. So many people love her and lift her up to the Lord every day. We’re praying for her and that she gets her surgery soon, and praying for you all as you endure that ordeal. My ds had a different, less serious, defect (ASD) and had his open-heart surgery when he was a year old. I know what you mean about feeling like it happens to “other families”, but when I look back it is like another family had to actually go through it. I think that is because the Lord carried us through. My little guy recovered so quickly and his health was quickly improved. I am going to pray for the same for Verity.

  43. michele from momys says:

    Susanna I am praying through my tears for you and Verity and ALL your precious family that God will give you strength and courage and peace as you go through this time. Praying for Him to give you and Joe wisdom and discernment in any decisions you have to make and confidence in them. Praying that He will give the medical staff who treat Verity wisdom and discernment for her specific case and that He would be directing them in all they do.
    I love you all.
    michele

  44. sarah says:

    Many prayers for Verity today and always.

  45. Charles says:

    Hi Susannah! Praying for your fam. The statements you make about trusting in God are a blessing and encouragement to me. I’ll pray that He will continue strengthen you and I’ll mention this again to the deck crew during prayer time.

  46. Lynda Keene Fry says:

    Susanna  His love is as far as the East is from the West, so I know that the love I have in my heart for you and yours can easily travel a few miles to where you are.  I have been following your blog faithfully and I just want to say that you have truly laid open your heart about this journey God has you on.  It’s been like a great book that you just can’t put down.  I love your writings.  You are excellent at expressing yourself through words.  I have loved seeing the pictures of all of you!  Verity is just too cute.  I know she is in our Lord’s hands, as well as the rest of you.  I pray that God envelops your home with His love, strength, wisdom, joy in Him, peace, rest and healing for precious Verity.  Love you guys,  Lynda

  47. Marilyn Osborn says:

    Prayed through the night…..into today….looking for updates when you have the time.

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