One Year Ago..........(kleenex alert)

One year ago.

One year ago, I spent the night in a hotel holding my baby while she slept. I slept in the chair holding her and praying that tomorrow all would be well.

One year ago, I awoke early to hand my baby over to a nurse and watch her be carried down the hall, asleep again. As I walked toward the day surgery waiting area, my mom came towards me, missing Lily by mere moments.

One year ago I sat in the day surgery area, surrounded by loved ones, but missing the two that I hold dear. Grace was home with Grandma Terry and Pop pop. Lily was in an unseen operating room with capable surgeons, nurses, fellows, and God’s power surrounding her. It was the longest day of my life. From the moment they took her to the time we got home a week and a half later, time ran together into the longest day. But those hours that she was in surgery, they would be good, bad, and prayerful. I will NEVER forget THE CALL. The nurse, who was supposed to call every hour, called and said that they were closing, surgery was over… THEN within ten minutes she called back. They have to go back in; Lily had gone into SVT (supraventricular Tachycardia). Her heart rate was over 300 and her blood pressure was dropping fast. (Now I know this means she was dying). I hit the floor on my knees; friends started calling friends, facebooking, e-mailing begging for more prayers. When all was said and done a total of 7 hours in surgery, Lily left the OR with an open chest, but everything was under control. We got to see the surgeon and his nurse practitioner. Dr. Kanter let us know everything that happened in surgery and that the next 24 to 48 hours would be critical. Then we were sent down to the ICU family waiting area to await the time that we would be allowed to go back to see her. As we got there, they were clearing the CICU (cardiac intensive care unit) for her arrival. When a new patient enters the floor all parents have to leave their child’s bedside until the new patient is stable. So we left one vacant waiting area and entered a soon filling one.

One year ago, I met some of the most wonderful people in the world. The surgeons, doctors, fellows, nurses and everyone at Egleston touched our lives in that one short week. I met other parents, some not as lucky as we……. I met volunteers, and Lily one day will know that her fairy godmother hugged me in the hallway of Egleston………….. I met the ability to sleep in a windowless room and wake up before shift change for a quick visit before the floor was closed for rounds and shift change…….I met a lot about myself, my family and mostly my FAITH.

One week ago, I went with Lily for her cardiac 6 month check up (one year post op), and learned things that scared me. I had hoped we were through that I wouldn’t have to live through this again. Instead I now know about scar tissue and sutures and what that means for the supravalvular aortic stenosis (possible surgery depending on pressures during large growth periods) ((WOW, really sounds like I learned a lot)).

So Today, I celebrate! One year after my baby went through major open heart surgery, she is a healthy 16 month old girl who runs at life full throttle, who loves balls, cars, dolls and being outside. She loves her family, her friends and her FOOD! So bring on the cake, cookies and everything else……..For today is the day the Lord hath made……and I say we PARTY!