Tuesday, September 20, 2011

The Miracles of Medicine... and my Kick Ass Kid!

We are home from the hospital! I must admit I do miss it though. It was a vacation of sorts that allowed me to sit and hold my baby for hours on end while reading and not worrying what my dear Luna was getting into. If only I had been on a beach and my child not in the ICU! As most of you know, Ruby did fabulous with heart surgery. It's amazing how resilient kiddos are - if not for the bandage on her chest you wouldn't even know she had open-heart surgery less than a week ago.

Although I am a fan of modern medicine, I believe it is sometimes over-used and can save a body that is void of actual life. Right now, I am thankful for modern medicine. My little girl would not have lived without it, and hers is a life worth living.

Waiting for surgery
As predicted, the hugeness of surgery didn't hit until we had to say goodbye. We sat at the hospital all morning with a parade of nurses and doctors coming in to introduce themselves and explain their role in the procedure. We chatted and joked. When it was time to take her I realized this may be the last time I ever see her, and so the tears flowed. They told us it would be an hour to prep her, and they would call us before starting. They kept us apprised of the procedure with scheduled phone calls throughout. It was over in 3 hours. The surgeon came out to give us the good news of a successful surgery and direct us to our baby girl in the pediatric ICU.
Tubes and machines galore

When we first saw her in the ICU, she was hooked up to a million lines and machines, sedated and on a ventilator. The tears flowed again. The nurses in the ICU were wonderful and took loving care of Ruby.

No, that's not a bomb strapped to her chest
By the next day almost all of her lines were removed and the number of machines were dwindling. She was on a morphine high - eyes open but no one home. Within 3 days she was back to being herself, pulling out her feeding tube, wiggling herself down the crib, grabbing any line she could with her hands and toes. By day 4 she was smiling infectiously at you whether you were there to hold her or draw her blood. Ruby made lots of friends.
There's that smile and HUGE belly
 Just a side note to ponder for a moment. People always tell me how children and persons with Down Syndrome are generally such happy people. I know, quite a blanket statement (especially since there is a documentary on Netflix about a guy with Downs that likes to swear and watch porn). I don't know if it's Ruby's overall nature, the Down Syndrome, or a combination of both, but she is the happiest baby I have ever seen. She made everyone at the hospital smile with her bright eyes, loving smile and warm nature. She greets each day with a huge smile. I love it and I love her. Once the fear of death dissipated, it was wonderful holding my baby for hours on end. I haven't been able to hold her this much since she was born. I missed my dear Luna, but I wouldn't have wanted to be anywhere else.

Heart surgery teddy bear with lines and bandages just like Ruby's
We anticipated discharge by Sunday, but Ruby was still on oxygen and her blood oxygen saturations were dipping down while she slept. So we stayed until Monday, when we were given the green light to go home! I finally put her pajamas she wore to the hospital in the wash last night. They smelled like her and I was afraid to wash them in fear of something happening to her and not getting to smell her again. I started to throw them in the wash each night but couldn't bring myself to it until last night.

We have a follow up swallow study in 3 weeks. Fingers crossed for coordinated suck, swallow, breathe (instead of suck, breathe milk into your lungs, swallow) and return to eating by mouth. Although midnight tube feedings are much easier than bottle/breast (as she can sleep through them), we'd much rather do things the old-fashioned way.
We are so very thankful for everyone's kind words/prayers/thoughts, meals, and donations towards our coffee/food fund. We were well taken care of by family, co-workers and friends and are very much appreciative of it.
Thank you for all of the love.