By now, Lindsey was 3 months old. She got to come home about 3 1/2 weeks after her last surgery. She seemed to be digesting her food properly and looked quite healthy. She stayed awake a lot of the time and was always quiet, she didn’t cry unless she was in pain. She did still have a few ‘spells’ where her breathing would be too low and the monitors would go off (DESAT’s) but they gradually went away too. The nurses trained Heather on how to change her bandages for the Broviak, clean out her G-tube area and monitor her feedings with the Kangaroo pump. She also had to give her medicines through another port in her G-tube, the main one being her blood pressure medicine. She was still on Cisaprive for digestion of her milk.

After Heather learned the basic things necessary to take care of a special needs child, they were FINALLY able to bring our little angel home. They waited and waited for the discharge papers, waited for the doctor to finally remove her Broviak. They finally did and Heather and Rusty were so anxious to get their little angel home, they left --- but unfortunately Rusty had to turn around and go all the way back down to the hospital as they were so anxious, the KIDS forgot the babe’s medicines. So while Heather and the rest of the family were helping them get settled in and holding the babe AT HOME for the first time, Rusty went to get the meds. But we finally got our little Christmas baby home.

Our whole family was there, Heather’s brother John, her dad John (Grandpa Wixom), and Rusty and myself. We were all so very happy that day -- it was finally a reality, no more running to the hospital constantly.

On the third day (Christmas Eve), the visiting nurse finally arrived. Heather was having a hard time getting Lindsey’s blood pressure to register on the portable machine and the nurse suggested taking her back to the hospital to make sure her blood pressure wasn’t TOO high. She thought the machine was faulty. So, on Christmas Eve, they packed her up with tears in their eyes and took her back to the hospital. When they took her blood pressure they said yes, it was still high but not ‘too’ unusual as she had always had high blood pressure. The cord on the portable machine was much too long though so they swapped it out for a shorter one and then they could be on their way, much to Heather and Rusty’s relief.

The nurse came again after Christmas. She took Lindsey’s blood pressure and it was still quite high. She called the doctor and they said to keep doing what she had been doing, giving her the same amount of medicine. After a few days, Heather had her first appointment with the doctor who had one other CdLS child who was a twin (14 years old). The doctor seemed to think that Lindsey was doing well. She told Heather she could put her on an 8 hour drip instead of waking up every 3 hours to feed her. That was good news for Heather as she was worn out from waking up so many times in the night. Later that week, Heather had appointments for her OT and speech therapist.

On New Years Eve, we all gathered at Heather and Rusty’s to celebrate. Lindsey smiled at her Nana for the very first time that night. I was beholden. The most beautiful sight I had seen in a very long time. In the next few days, she smiled two more times. On January 3, 1998, Heather and Rusty were going to go to a movie, their first time out alone since Lindsey was born, but their plans got confused and they ended up not going. They had been taking turns sleeping in the living room with Lindsey as she just didn’t seem to sleep well in their room. We don’t know if it was a little too cool or what but she would just lay there, awake most of the night but not really fussing. So on January 3, it was Rusty’s turn to sleep with Lindsey. They started her usual drip at 10:00 that evening. Lindsey was happy and kicking her blankets off, smiling at her mother. Everyone went to bed. Rusty thought it was strange that by 3:30 or so, she hadn’t awakened him to change her diaper. So he got up and got everything together to change her but ... something was wrong. He ran in to get Heather and then they ran to get Heather’s dad from downstairs. He ran up and started CPR but ... it was too late for our little angel. God had called her home to him. We believe she is now at peace, perfect in her world and free from pain. We know there’s a reason for this happening --- we aren’t exactly sure what that reason is but I know one thing for sure, we were so blessed to have her in our lives for the very short time that we had her.

This is the end of Lindsey Leanne Griffin’s story ---

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