Mended Little Hearts Open Forum

New to forum - Son had TOF surgery at 16 days, now 7 months and thriving!

  • 1.  New to forum - Son had TOF surgery at 16 days, now 7 months and thriving!

    Posted 06-30-2020 22:21
    Hello everyone,

    I believe it's probably been a mix of anxiety, denial, and sheer amazement that has taken me so long to form the words to introduce our family to the Mended Little Hearts family. I wear my bracelet everyday and have since the day I received the wonderful support package. But I haven't talked much about Noah's surgery and first month after delivery. We found out about his heart murmur right after delivering and the doctors weren't sure what they were hearing. He would sat low, like 75-80, then sat at 100. It was emotional, I just wanted him to be okay and for us to go home like we had with our first son, Malcolm. I felt guilty, like, what had I done differently to unknowingly sabotage my child. Would they be okay?! Well, we were allowed to go home from the hospital and he wasn't placed in the NICU. They told us that we would need to get him evaluated and he would need to go to the doctor weekly to make sure his saturation levels were in a safe zone. First week check up, he satted in the 90s! He was defying the odds and setting the bar high! Then week 2, his sat was in the 75-83 range. The rest is literally just me in full on whatever it takes mode, I don't even think I realized how serious it was until ... Well, probably right before we walked down to the surgery. They told me to take him to Children's National Hospital and we went to the ER and we were placed in priority because of his age and situation. I still thought we might get to go home maybe that night or next day, just get some oxygen and he'd be better. We spent 11 days in the hospital. We were admitted on December 4th, the day after we went out to dinner as a family for our wedding anniversary (December 3rd). We took a family picture at Don Julio's. He had surgery on December 6th. I was ... a mess? I couldn't even tell you. I just had to be strong for my baby. My husband met me at the hospital and was my strength. He also has a heart condition and we just relied on prayer and believed in the doctors and nurses. They were literally the best. Honestly, I was in my faith heavy, I gave it all up to God. I was very private, to myself. I know people wanted to support but I just wanted to be by myself or with Will and the kids. I missed Malcolm terribly the days we were apart. I remember one day I took Malcolm to this Dinosaur Discovery class I had signed him up for in advance, while Noah was healing. The guilt and the happiness combo was ... Interesting. You know, I didn't do all this analysis when I was going through it because I literally just wanted us all to get through it. God carried me through. I have my miracle. I thank Him everyday. Noah is thriving. I have more stories too - about his surgery, his scar healing oddly at first (in hindsight, just...wow, it was going in a weird direction), to now, he is STRONG, determined, BEAUTIFUL, SMART, and just sweet as pie baby boy. I hope you find hope in my stories. Trust that the Lord has got you, whatever that looks like, it's for the best.

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    Ashley Cotton
    Gaithersburg MD
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