Laynee was born with a very large Atrial Venticular Septal Defect. I have always been thankful for this defect for it is because of this that she was born in Peoria and found her way into our home. Her mother was unaware of the fact that she was pregnant. When she went to the emergency room with severe cramping, she learned that she was in labor and would soon deliver a child. An ultra sound revealed that the baby had a heart defect. Laynee's Down Syndrome was not detected at this point. Because of the defect, birth mom was flown from her area to OSF Saint Francis in Peoria in order to deliver in a hospital that had a NICU and surgeons who could perform surgery immediately if needed. Jalayne was delivered by C-section and spent several days in the NICU before coming home with us.
We knew from the start that surgery was imminent. They really hoped that the surgery could wait until she was at least 5-6 months old. We saw the cardiologist frequently and kept a close eye on her. She was pretty weak those first few months, eating was difficult and her coloring was poor. Then, on April 19th, just shy of three months old, she was sleeping in her infant seat when she started making little squeaking noises. When I went to take her from her seat, her lips were blue and her skin had a sickly gray palor. I was scared, to say the least. In moments she went from sleeping peacefully to looking as if she was fighting for air. Moise was home with me at this time and I knew I needed to get her to the hospital fast. I called my friend Karen, and she happened to be close by my house, she stopped by within a few minutes and was also worried about the way Laynee looked. Karen and her daughter, Jenna, stayed with Moise and I loaded Laynee up in the car and headed to the hospital. I had called her cardiologist and thankfully they did not make me go through the ER but I took her straight to the office so that she would not be exposed to any viruses in the ER. It was quickly decided that she would not be able to wait until 6 months for the surgery. She was in congestive heart failure and needed the surgery soon.
With surgery scheduled for the next morning, I took her home with the prescribed Lasix to keep the fluid from around her heart. I sat up with her most of that night, too afraid to be away from her, too afraid she would stop breathing. We checked into the hospital early and waited, and waited and waited. Our friend, Matt, came up and sat with us most of the day as we waited. The hours slipped away and finally, late in the afternoon, they came and told us that the surgeon was working on an emergency cardiac patient and we would need to reschedule for Monday morning. Poor Laynee was starving as they wouldn't let her eat anything before surgery. She was never keen on a pacifier but that they she sucked on it as if she might swallow it whole. After giving her a bottle, we went back home to wait two more days. I was terrified that she would pick up a virus and would not let anyone in or out of the house.
Monday morning, on the 23rd, we were back at the hospital and this time she was taken immediately to surgery. How well I recall the fear as Jim and I handed our beautiful baby over the nurses. We knew she was in good hands but we knew also that she was very sick and that things don't always go smoothly. Jim and I alternated between sitting and pacing for several hours before the surgeon finally came in to talk to us. The defect was large and she couldn't have waited much longer but it went off without a hitch.
Then began the long road of recovery. We had been told to expect her to be in the Peds ICU for about 4 days. Four days came and went but the rhythm of her heart would not synchronize. I watched that monitor hour after hour, day after day. I had a couple of dear friends who took turns going to the hospital and holding her so that I could spend some time with my other children. Laynee appeared to be healthy, her color was much better, her appetite was good, her breathing was good. Still, the numbers on that monitor told an entirely different story.
I recall standing over her bed as the doctor's came in on their rounds each morning. They were clearly at odds over the best course of action to take. The cardiologst wanted to wait it out, the surgeon wanted to go ahead and place a pacemaker in her little heart. I was afraid of the idea of another surgery and pleaded with the monitor to give us the numbers we needed to see. Finally, after two weeks, the chief cardiac surgeon came in and with a tone that pracitically dared someone to argue with him, announced that "this little lady needs a pacemaker. What are we waiting for??" Just like that, it was settled. They would cut into the same incision the next day to place her pacemaker just below her sternum.
Two days later we brought Laynee home and she never had any other problem's with her heart. Each month we would do a check to make sure the pacer was doing it's job and send the results to the cardiologist by phone. All in all, it was not nearly as big a deal as I thought it would be to have the pacer. The only problem was that our busy little lady loathed sitting still for the few minutes it took to check the pacer. She sported a scar that ran down the center of her chest. It was angry looking at first but in time it faded until it was barely noticable.
As I look back at this day five years ago. It hurts to think of all that she went through, only to be taken far too soon. I've questioned God a million times on this matter. In my mind, I imagine that any death would have been easier to take than drowning, and so I ask, "Why God?" "Wouldn't it have made more sense to have her pacemaker quit working?" Yet in my heart of hearts, I know that there is no such thing as "easier" in reference to the death of a child. There is no good timing, no good way to say "good bye" to the little ones we hold so dear. Laynee was a fighter, a brave girl who feared nothing. I cherish those days when we fought with her, when there was something that we could do to help her, to live out, on a daily, hourly basis, our love for her.
I miss her. I miss her so much.