It was exactly two weeks ago that we brought Emmy in for heart surgery. The surgery went beautifully, by all reports, and she was brought up to the Pediatric Intensive Care Unit to recover. We were expecting to be in and out of the hospital in about 4-5 days.
It was in the recovery room that she suddenly went into cardiac arrest — twice. People with Williams syndrome can have complications during and after surgery (problems with anesthesia, blood pressure changes, etc), but we thought we covered all of our bases and did all of our research. We thought we were beyond prepared. We thought all of the doctors with whom we spoke (prior to surgery) were beyond prepared. It turns out that, sometimes, parents can only control so much.
What happened next, though, was miraculous. The doctors and nurses saved her life. They acted quickly and smartly. They turned the recovery room into an operating room. They opened her chest back up and put her on a bypass machine called ECMO. At that time, Emmy’s heart wasn’t beating on its own. The machine was doing all the work.
I will be forever indebted to the people who saved her life that day. I am also indebted to the wonderful doctors and nurses who cared for her over the next two weeks. And I’m indebted to those to offered us prayers and support through my blog and Facebook and texts and emails and voicemails. I’m sorry that I haven’t responded to everyone yet! I’m still kind of in a fog.
Over the past two weeks, Emmy slowly recovered. One by one, the machines were taken off. It seemed to take forever. Two weeks felt like two years.
But we got our reward last night when Emmy opened her eyes for the first time in two weeks.
And, today, a music therapist came to visit — to see if we could pull Emmy out of her shell a bit more. Emmy still has a c-pap in her nose to help her lungs. She hasn’t spoken a word, though she’s tried. Her voice is very small and sounds like a wheeze. She hasn’t smiled yet.
But when the therapist started playing the guitar, Emmy weakly reached for maracas. She gingerly took one in each hand. And, with two little hands that have barely moved in two weeks, she shook the maracas to the song.
“Hello Emmy,” the therapist sang. “I want to say hello.”
I am sooooooo excited for you all!!! Better for her to come back slowly. Bless her precious little heart and all of yours as well. The next smile you see from Emmy will be your most treasured, trust me. Worth the wait.
I’m so happy to hear that. Hopefully she’ll be up and dancing soon too.
Since I spent time last month in the MICU with someone to whom I became a second mother and who was in essence my only child, you have been much on my mind and in my good thoughts while you’ve done your time with your sweet girl in the PICU.
Emmy looks beautiful. So beautifully alive.
such sweet news!!
wow. that’s quite a story. you are so brave, Vanessa. you and Emmy.
What an amazing story. All I can think about now is that sweet “Williams syndrome smile” that I know so well, shaking those maracas, just as happy as can be:)
So happy to read your blog, and hear once again a bout th incredible spirit of ourchildren and ghe powerof music in their lives…makes the weekend extra special!
Hi there- just wanted you to know I’ve been thinking about you and your sweet family since Penny posted about Emmy’s surgery on the WS Facebook support group. What a dark tough time you’ve been through, and are still going through!!! My little one with WS is Lucy and she’s almost 9 months old. She had successful open heart surgery at 13 days old but they couldn’t close her chest because of swelling. Four hours later, in the ICU, she went into cardiac arrest, and her nurse began CPR. We got a call at 2:43 in the morning to come to the hospital because we were going to lose her. We got to her room in about 15
minutes and they were putting her on ECMO, where she stayed for 6 days. I hope that no one ever has to go through that, so it broke my heart when I heard about Emmy. I was SO VERY glad when I heard that Emmy had been successfully weaned off- such strong kiddos we have!!! Go Emmy Go!!!
I have never met Emmy, but I love her!!! I am so happy she is a little fighter! She is in my thoughts and prayers. Xo cousin k
Yes! I knew she would make it 🙂 These little guys are strong because they love life so much~God hold you all tight in his arms and he will make you all whole is what I PRAY FOR YOU ALL. OXOXOX LISA
from our big William syndrome family.
Thank you, Lisa! I do love our WS family.
What a wonderful blessing and moment that must have been. We will have to have a musical parade when she comes back to the neighborhood! Xoxo
For sure 🙂
Even though I don’t know you personally, I am delighted to hear of this new development and I am amazed and inspired by your courage and Emmy’s! I will continue to keep you and your family in my thoughts and prayers.
Thank you, Allison!
SO EXCITING!! Go Emmy go!
Thanks Liz! 🙂