Open Heart Surgery

Wow! Gracie bug is 4 months old! Time is flying by.
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We have a surgery date for Gracie: June 26th. So let’s hope the next few weeks fly by too. It’s a little trying to know so far in advance when your sweet baby will be having open heart surgery.

I’m choosing to compartmentalize and stuff that date in the back of my mind and just concentrate on loving my kiddos and husband and enjoying life with them. They and work keep me busy.

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Off days with this one include lots of snuggles and a million attempts to make her laugh. Nothing yet…

We don’t know anything in terms of how long we will be in the hospital or what recovery looks like. We meet with our cardiologist and do some pre-op work on June 12th. We may get to meet with the surgeon, so I am sure we will know much more at that appointment.

Is it ok to ask the surgeon if he is still feeling fresh and on top of things for a Thursday surgery? Or make sure he isn’t returning from a long vacation the day before and may be a little rusty? Or has a newborn at home and may be sleep deprived? 😉

I think my husband may not think those are appropriate questions.

Weight gain has been rough. For her whole life, we will have one great week, and 2 bad weeks. We did go up on her heart medicine the other week, and she gained 8 ounces quickly, so I’m grateful there is some medicine that can help relieve her heart a little so she can gain some weight! It has been quite an emotional roller coaster for me to constantly see her weight fluctuate and know that she really needs to be at least 10 lbs to be an optimal candidate for surgery.

Gracie is still rocking therapy. We work hard every day and it is so exciting whenever she does anything! There are obviously moments when I think, “shouldn’t she be able to do ____ by now?” But I just remind myself that this is our new normal. All kids are different and Gracie is on her own timeline and that is just fine. I am just so grateful for all the resources we have to make sure we are doing everything we can for her!

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These baby-sized maracas are perfect for learning how to hold on to things!

Big brother Gage continues to be a huge help with helping Gracie do certain exercises.

Working on head control is more fun when you have a big brother helping you.

Working on head control is more fun when you have a big brother helping you.

Please pray for Gracie and the doctors as we prepare for surgery. Even though the thought of this surgery can overwhelm us at times, we’re praying this surgery may be used for His glory and make His name known. We know He is trustworthy and good and will rest in that.

I’m also praying that this wonderful story of our Gracie’s life and our new normal will continue to encourage others to believe that all life is so precious.

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Posted in Down Syndrome, Every Day Stuff, Gage, Gracie
8 comments on “Open Heart Surgery
  1. carolyn gentle says:

    I think about yall daily,lots of prayers for Gracie.

  2. Ashleigh knight says:

    Love all those sweet pictures! What an encouragement you are to me and many others. You are all in my thoughts and prayers.

  3. Mary says:

    Gracie is in my prayers, also for the doctors and your family. thanks for sharing.

  4. Barbara says:

    Praying for Gracie. Also for the whole family, be strong ang rest in His arms.

  5. Rhonda Gentle Posey says:

    She is so sweet…praying for all that is ahead of you. Your son is so good with her…he’s special also. Love & Prayers!

  6. Maggie says:

    First, we totally have those maracas, also. 🙂 But more importantly, we’ll keep Gracie in our prayers! She is beautiful!!!

  7. Ginger says:

    All of you are in my constant prayers!! Gage and Gracie are such special children and very lucky to have the two of you as their parents! God is good….I know that you trust Him always! It is from Him that we all derive our strength to face all things! I pray that He will always keep all of you safe and well in His arms!

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