From Heart Surgery to Home

We are home. Amazing.

Like I said before, I have anticipated this surgery and had anxiety and fear over possible outcomes, and now it’s over. Gracie’s heart is fixed and we are home. There were several times when we got home yesterday that I just held Gracie or Gage and just cried. I’m so thankful that God brought us through this and blessed our family with health and amazing care at Children’s Hospital of Alabama.

So happy to have her at home!

So happy to have her at home!

Gracie is a little fussy. We don’t know if it’s pain, or hunger, or sleepiness….because she never really cried or got upset before! But she slept well last night and has eaten well today, so we are grateful.

We updated this blog on Thursday night, while we were waiting on Gracie to wake up and get off the ventilator. Around 11 pm, they took out the breathing tube and she was breathing well on her own, with the help of some oxygen through her nose. She was in a lot of pain after that, and morphine didn’t seem to even take the edge off. We tried some new things and she finally got some relief. We stayed in the ICU Thursday and Friday night. On Friday, they took the chest tube out of Gracie (which they actually just pull out! While she’s awake! The tube is behind her heart to drain excess blood and they just pull it out!), so I got to hold her for the first time.

Best moment. Cried my eyes out. Still hooked up to a lot of sensors, IVs, and oxygen, but at least we could finally hold her!

Best moment. Cried my eyes out. Still hooked up to a lot of sensors, IVs, and oxygen, but at least we could finally hold her!

On Saturday night, they moved us up a few floors to their step-down unit because Gracie was not critical anymore! However, as soon as we got up there, she did a couple of scary things and they had a nurse practitioner from the CVICU and our surgeon come for a visit. All was well, but it left this mommy a little rattled.

I updated my Facebook, Instagram, and texted with many of you throughout this time with prayer requests and I am completely overwhelmed and amazed at the power of prayer. Your prayers for our family and specific things, like Gracie’s pain and the need to not rely on oxygen, and even for her bowels to start working, were answered. I felt such peace. Thank you.

From the bathtub at home to the hospital room, a little brother and sister FaceTime!

From the bathtub at home to the hospital room, a little brother and sister FaceTime!

Sunday and Monday brought continued improvement! On Monday, during rounds, they were looking closely at some fluid around Gracie’s heart, so they wanted us to stay another night to compare it the next day. Tuesday’s test showed the fluid was the same. This happens in a minority of patients. The hope is her increased dose of Lasix will take care of the fluid. If not, there are other options, including being admitted back into the hospital. We go to the cardiologist tomorrow to take another look. Please pray that the fluid has decreased.

Getting an echo to check her repair!

Getting an echo to check her repair!

One thing I wanted to use this blog to do is to encourage other families that have either received a diagnosis of down syndrome, or maybe even a heart defect that needs fixing. One of the things that has been the most amazing to me, is this picture:

photo 4(6)

Can you see the amazing, and QUICK difference in Gracie? I hope this encourages others to show how resilient babies are!

I mentioned this in the last post, but I cannot tell you how much the social media support, texts, visits, gifts, and all other support meant to our family. I am amazed and so grateful. You all have changed me and how I now want to encourage others.

We will update again tomorrow after cardiology!

Big brother loved visiting Gracie at the hospital! Toys on each floor, a cafeteria with a lovely worker who gives you free ice cream, and amazing nurses who will let you arrest them while you speed down the hall in your police car.

Big brother loved visiting Gracie at the hospital! Toys on each floor, a cafeteria with a lovely worker who gives you free ice cream, and amazing nurses who will let you arrest them while you speed down the hall in your police car.

Posted in Down Syndrome, Every Day Stuff, Gage, Gracie
7 comments on “From Heart Surgery to Home
  1. Cindy Jones says:

    So glad you all are home and Gracie is doing so good. GOD is the GREAT PHYSICIAN.

  2. Brooke McCollum says:

    Awesome awesome awesome! Love love love y’all! Prayers!

  3. chismael says:

    Happy you are home, my prayers are with you.

  4. Rhonda Posey says:

    So happy all is going well. Prayers for Gracie to get lost of rest. Love & Prayers!

  5. Ginger says:

    She looks great!!! I know so well the power of prayer….God is SO GREAT!! Keep loving each other…all of you are amazing!!!

  6. […] Her blood work was….NORMAL! We are very excited with these results and are so grateful Gracie has such beautiful health now that her heart is fixed! […]

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