Timothy's eventual diagnosis & repair is a true blessing. He is a special gift & our outcome has been wonderful. However, 1.5 years after his surgery we were struck once more by Congenital Heart Defects (CHD) ... our son Taylor Ryan was born with Transposition of The Great Arteries or "TGA" on April 10, 1997. Sadly the outcome this time was not so good & we lost our little angel less than 15 hours after birth. I *cannot* stress enough, the importance of fetal echocardiogram, level 3 ultrasound etc. My Dr. felt we didn't need this extra testing & didn't set us up for it... had we known prior to his birth, we could have been in Seattle & the outcome may have been much different. Please know that it *can* happen again & does. I don't want to scare anyone, but just make you aware that after a CHD child has come to you, your risk is higher & sometimes downplayed by the doctors. It is a very real risk & when they say as my doctor did "Your risk is 1% of it happening again". (in reality it was 2-3%) This does not mean another ASD, VSD etc... it means *another* congenital heart defected child could come to you. It may be less severe or it may be more severe. God willing... it won't be.

I often tell Timothy that his "zipper" (shaped like a big exclamation mark (!) is proof of all the excitement he has brought us... everyone knows that he brings with him EXCITEMENT~ it is written right on the front of him :)

He was placed in a "pigastat" which clamped tightly around him~ his arms stretched upwards, then wheeled out into the middle of the room, the lights turned off & mommy had to leave! He was *terrified* of this thing & we were all happy when he outgrew it

The next day, the dr. called & said he felt we could wait until May to see the PC when he came to Alaska, however 3 days later Children's Hospital called to make an appointment! After talking with our dr., we set the appointment for Nov. 5, 1995. The next morning was beautiful & sunny. I took two of our older children to school then Timmy & I drove to the cemetery and I sat at my parents graves. I talked with them & asked them to see that their best angels watch over my beautiful son. We were so very scared. Sept. 28., our dr. called and said that Timothy's heart was "definitely enlarged" & the PC wanted us down in Seattle soon. He suggested we make plane reservations for Sunday Oct. 1... We were to plan on staying 3 weeks. Tuesday they would begin tests, the next week surgery & the next week for recovery. Sunday came & the weather was too bad to fly. The navigation aids were out at our airport and we could not fly with the fog! We caught the ferry to Ketchikan that evening and would catch the plane on Monday morning. During the night on the ferry, Timmy began to act uncomfortable. He cried a lot & couldn't sleep. He wouldn't eat & I walked the floor with him. We were so afraid for his heart. On one of my many walks through the cafeteria I spoke with a woman that worked there. I told her what was going on & she contacted the captain who pushed the boat in earlier than planned. We were loaded into an Alaska Marine Highway van & taken straight to the ER in Ketchikan. They were so good to us. My brother Tom was waiting at the ferry terminal & saw us go. He followed us to the ER. The ferry crew waited to see how Timothy was, and called the airplane to hold it until we were cleared to go.
The ER appointment showed that Timothy had infections in both ears! It wasn't cardiac! We were given strict orders to go straight to the ER at Children's upon arriving in Seattle.

To travel, we were told to take two paper cups, put damp paper towel in the bottom & hold the cup over each ear as we landed & took off. It would help the pressure. Timmy had been given pain medicine & was asleep on take off, but as we landed he was in a great deal of pain. We felt so helpless. I'll never forget a man coming up to us as we walked off the jet in Seattle. He said "You did everything right. You did just what I would have done- I'm a Pediatrician from Ketchikan".

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