In one week…

In one week we will be 24 hours out of open heart surgery. Hopefully we will be able to take some deep breaths and start the recovery process. We have known Gracie was going to need to have surgery since I was pregnant! This has been a really long time to wait, think, and be anxious about it. I have done a pretty good job of compartmentalizing my thoughts about this surgery, but after our meeting with the surgeon last week, it’s been impossible not to think about it frequently. Something about having all of the things that could go wrong laid out for you will jerk you back into reality!

Gracie, mommy, and daddy were not fans of having her blood drawn.

Gracie, mommy, and daddy were not fans of having her blood drawn.

I shared on Instagram the other day that it is a decision every moment of my day to trust God instead of panicking. I am grateful for my faith, family, and friends during this time. These things are a necessity.

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Will you pray for our Gracie? For her body to be strong and resilient as her heart is stopped and put on bypass, and as the surgeon patches her heart to make it better than ever? That she will come off the ventilator easily, and eats just as well after surgery as she did before? These are the things we need for our precious Gracie.

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“Before I formed you in the womb I knew you, before you were born I set you apart.” Jeremiah 1:5

We’ve heard we will be in the hospital anywhere from 5-10 days, depending on how it goes. That seems like a very long time when I think about sleeping, eating, staring at my baby, and praying for her in a small hospital room, but the fact that she is having open heart surgery and may be out of the hospital in 5-10 days, is actually pretty amazing.

Gracie has been doing great in therapy. We will go once more next week and then be done until August. She isn’t allowed to be on her tummy or strain herself after surgery, so we will take things easy and be creative on how we work on things.

Go Gracie! Working on that strength and head control!

Go Gracie! Working on that strength and head control!

Thank you to everyone that has been so encouraging to us. Your prayers and offers to help are amazing. We can’t thank you enough. Please continue to pray with us.

So here are two pictures on a lighter note…

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This is Gracie looking at herself in my phone. She is mesmerized!

This is Gage and me at the same age. Aren't we twins?

This is Gage and me at the same age. Aren’t we twins?

 

Posted in Down Syndrome, Every Day Stuff, Gage, Gracie
12 comments on “In one week…
  1. Wayne Gentle says:

    We are praying daily Gracie and all of you. We will pray for these specific needs. God bless!

  2. Cathy Gipson says:

    Gracie has been in our prayers as have you, Les, Gage, and the grandparents. Thanks for giving specific things to pray for. Our God loves her even more than you do and to me, that gives amazing peace. Prayers continuing and I look forward to hearing good news!! Love to all!!!

  3. Brooke mccollum says:

    Love you tons! Praying for this for months and months now!

  4. rhonda posey says:

    Our Love & Prayers go out to all of you. We will pray for all of Gracie’s needs and the Drs. With the strong faith ya’ll have shown to all of us, you help other people. With all our Love & Prayers sweet Gracie!

  5. Jake Kelley says:

    We are praying for Gracie! Please let us know if we can do anything to help you guys out. The CICU staff is amazing! I am at the hospital daily and would love to come see you guys. Seriously if you need anything, please don’t hesitate to give me a call. 2567380542

  6. sogamom says:

    Hi! I found you through a friend of a friend of yours & I just wanted you to know we are praying for your sweet Gracie, all of you, & all of the doctors & nurses who will be caring for her in the next few weeks. My 17 month old daughter has Ds, but fortunately no heart issues, although she has had her share of hospital stays, blood draws, and heart wrenching procedures for other things, but things have finally calmed down and we are living a “normal” life. I pray God gets you through this period of surgery & healing so y’all can get to the “good stuff” too! 🙂 Having a child with Ds has been the best thing that has ever happened to us. 🙂

  7. Melissa Kiel says:

    I have been following your blog since Gracie was born. Your sweet family just blesses my heart. My family and I will be praying for y’all this week. May you have an abundance of peace from our Lord, and may precious Gracie’s body be so strong and come through surgery wonderfully!

  8. EVA ATCHLEY IKARD says:

    I have not got to see Gracie in person but seeing the pictures I feel like I have. Gracie and all the family are in my prayers. I love all of you. I love Gracie and Gage with all of my heart.

  9. Ashleigh knight says:

    Gracie, you and your sweet family are in my prayers! Your faith and walk through this is such an encouragement to me personally. May God hold you all in His hands as you turn all of this over to Him. Lots of love, Ashleigh

  10. Ashley Arnold says:

    Praying for you and sweet Gracie! You are an amazing mamma with an incredibly strong daughter…..may God continue to give you the peace and comfort you need…….

  11. Winefride ward says:

    My Granddaughter Bryony who has Downs, is now 16 and has just got a GCSE in Art !!!! Love and God bless you all, Win xx

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