As Bayflight landed, we were informed that Bailey was in heart failure. I always thought of heart failure as an issue for the older people. Never did I imagine I would have a child who would be battling this at such a young age. The flight crew came to Bailey's room, and took her up to the helicopter. We were told the nurse would contact us once they landed, and we got on I-4 and headed to Tampa.
Bailey spent a couple of weeks at St. Joes. She had one minor heart surgery, and a cardiac cath. She was on a ventilator for a couple of days, and we were sent home with an NG tube to assist her in gaining weight and also due to reflux. We visited Dr. W's office every 2-3 days prior to open heart surgery. We saw him more than we saw her cardiologist. Dr. W made all the decisions concerning her medical care. He would advise us when we needed to take her to the hospital. She had numerous hospital stays for what we called "tune-ups", and eventually we had her on oxygen at home. During these hospital stays we spent every night with her. Not once did she sleep alone. I began to admire her strength, and I knew I had to be strong for her.
On Monday September 18th we arrived at St. Joe's for Bailey's heart surgery. I couldn't wait for this day to come, and now that this day was here I was terrified. This is the day Bailey chose to roll over for the first time. This was a milestone we had been working so hard for, and we celebrate by sending her in for surgery! We were surrounded by family and friends that day. I cry now as I think of how difficult it was to hand her off to the nurse. I was terrified for her. Surgery was successful, and within 5 days she was sent home on oxygen.
Bailey was a different baby after surgery. I had heard stories from other people about how much more active she would be and how her color would improve. They were right, she was an active little girl, and she was no longer our blue baby. She has remained healthy since surgery. We've had a few hospital visits for feeding issues, respiratory infections, and mrsa, but those visits are much better than the long hospital stays where we wonder if she is going to survive.