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.
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.
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.
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.
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:
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!