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The day after my son Aaron was born we noticed his breathing became very labor intense, as if he were panting. The hospital nurses assured us this was normal for newborn infants. "Oh, don't worry," they said. "Newborns breathe funny, they act funny, and sometimes they even look funny." He developed a squeaky, almost whistle sounding cry, and as the day wore on Aaron became lethargic.
A nurse was scheduled to work with us that evening who usually only worked with women in labor and delivery. Once again, we mentioned Aaron was breathing funny and this time someone believed us. When I pulled the covers off Aaron his little feet and legs were blue. The pediatrician was notified immediately and it didn't take him but a few minutes to determine Aaron was very sick.
They rushed Aaron to the nursery ICU, hooked him up to monitors and took countless x-rays. For hours we sat by his bedside in shock. We waited for doctors to find answers and watched in horror as Aaron struggled to breathe. It took so much effort for him to take each breath that he had to put his whole body into it, as if his little chest was lifting off the bed.
About 2 a.m. they decided to run an ECHO on Aaron's heart. Funny how your memory can block traumatic events. I know I was sitting at the nurses' station just outside the ICU door. They dimmed the lights to start the ECHO. I don't remember who told me, but later someone came out of ICU and told us only half of Aaron's heart was developed.
Aaron was tucked into this large, egg-shaped incubator on wheels and they were preparing to transport him to a larger hospital in a city 45 minutes away. You could hear the loud rumble of helicopter wings while it waited on the hospital roof. Two nurses and the pilot were talking with Aaron's doctor about five feet away from us.
I felt sick to my stomach. Even though everyone was rushing about, it seemed as if they were in slow motion. I was able to reach into the incubator and hold Aaron's little hand and tell him I loved him. My whole body was trembling. Just a week earlier they were making jokes at work about how much my baby would weigh. Wasn't it only a few days ago I was shopping at the mall for a blue snowsuit for Aaron to wear home from the hospital? Now it didn't matter what he was wearing, it was all about survival.
As the helicopter flew above the interstate we followed it in our truck. We couldn't speak, all we could do was follow it's blinking lights in the early morning sky and pray. Next we were lost in the neighborhoods near the hospital trying to find a parking space. Exasperated, we just parked on the street and ran to the nearest hospital entrance. Only twenty-four hours earlier I had delivered Aaron via c-section, which is normally a painful recovery for the following few days. Yet there I was, actually running around the dark city streets. I didn't feel pain, just sheer desperation to get back to my baby.
The pediatric cardiologist told us Aaron had a life-threatening and rare heart defect called HypoPlastic Left Heart Syndrome. It strikes about 400 babies in the U.S. a year. We were given two medical options: A series of three open heart surgeries with only about a 60% chance of survival, (at that time); or a heart transplant with equally devastating survival odds. You are under pressure to make a decision quickly, knowing full well without some type of medical intervention your child could die very quickly.
We chose surgery and agonized over the 60% survival odds. When our son was only three days old, a time when most parents are taking their healthy newborns home, we kissed Aaron's little hands, begged him to be strong, and watched nurses wheel him away behind swinging, metal doors. Open heart surgery! On a three-day-old child who has a heart no bigger than a common walnut. Imagine the skill involved in reconstructing a tiny heart. Imagine our terror.
Aaron did beautifully through the surgery and within four weeks he was able to go home. It was then life in our family changed forever. Our active lives turned into lives of isolation to protect Aaron from germs. I gave up a successful technology career to stay home with him and keep him out of public places. Going to church, visiting friends, and family gatherings became events we only attended separately. We wore face masks and changed our clothes every time we came home from a public place.
Oh, but the moments I cherished most from those first few months were the days I couldn't bear to put Aaron down for his nap. I would just hold and rock him for hours, watching him sleep, memorizing his face. Each day I had Aaron was a gift and I knew it. I also knew his next surgery was quickly approaching.
When Aaron was six-months-old it was time for his second open heart surgery. Aaron sat on my lap in the pre-op surgery room. He was laughing and smiling at everyone like six-month-old babies do, dressed in a yellow hospital gown with Disney cartoon characters printed all over it. We played patty-cake and sang his favorite goofy songs. Even though those swinging, metal doors loomed next to us, we did our best to keep it a fun atmosphere for Aaron and silently battled our own utter terror. You would start to feel tears coming on and have to look away so Aaron wouldn't notice. I mean it was absolute, utter terror.
At the end of surgery Aaron's pressures "crashed" and he was put back on the bypass machine. Essentially, Aaron had two open heart surgeries that morning. We were told Aaron had developed a shower of blood clots. They would have lost him if it would have happened even just five minutes later on his way back to ICU.
Once Aaron was back in pediatric intensive care the situation grew much worse. When the blood clots hit during surgery it caused brain damage from lack of oxygen. Doctors determined he had suffered a stroke to the right hemisphere of his brain, right near the area controlling his vision. Aaron's entire body and brain began to dangerously swell. He looked puffy and three times bigger than his normal size. What skin you could see was bruised or had wires coming out of it.
He started having violent seizures and screaming in pain. This was the hardest part. As a parent you want to take pain away from your child. You desperately wish you could take their place. One time he screamed for over three, horrific hours and there was nothing they said they could do about it. Nothing. He already had all the pain medication his tiny body could handle. He couldn't see us, but he could hear our voices and I wondered if he thought I was the one torturing him.
Three days after surgery Aaron stopped breathing, terrifying all of us, and sending ICU nurses scrambling. They were able to bring him back, but we were pulled into a meeting with five doctors and told there was little hope of Aaron surviving through the night. We were told even if Aaron did survive he would most likely be blind. Odds were he was severely mentally impaired from the stroke and brain swelling. He might not ever recognize us or even have the ability to simply breathe on his own again.
Doctors were concerned about the quality of life Aaron would have if he survived. They asked us to decide at what point should medical intervention be stopped. What a question to try and answer. We didn't want anyone to give up on him, but I suppose that was a question they are obligated to ask.
Was this some kind of runaway train of nightmare after nightmare? By this point we were sleep deprived and our ability to concentrate was wearing. You could walk down the hall, but never feel your legs moving. If we walked outside the hospital, it was like stepping into another world. The world outside rushed about as normal when just a few steps away, inside those hospital walls it was if a torture chamber imprisoned our baby.
There was nowhere to go for privacy, but I found a small laundry closet and shut myself up inside it. I didn't have the physical strength to even be on my knees. I literally lied face down on the cold, cement tile and sobbed, begging God for mercy. Nothing made sense and I felt unimaginable levels of grief I didn't even know existed.
I remembered a verse in Psalms and fumbled through my purse to find something to write it on. All I could find was an old business card, so I wrote the verse on the back of the business card and used a piece of medical bandage tape to tack it to the hospital bed next to Aaron's head. The verse read, "I truly believe I will live to see the Lord's goodness. Wait for the Lord's help. Be strong and be brave, and wait for the Lord's help." Then I read the verse to Aaron, even though he was heavily under sedation. It was meant to remind Aaron, my husband, and myself that no matter what the Lord chose to do with our lives, short as they may be, we would still -- somehow -- live to see His goodness, even when it hurt so desperately and when nothing made any sense.
Since Aaron wasn't expected to live through the night we took turns staying with him so he wouldn't be alone. Around midnight the pediatric cardiologist came in. He didn't live far from the hospital, and like us, he couldn't sleep that night. He sat down in a chair next to me and we talked about how it all didn't make sense. He offered me an antidepressant drug which I declined, and he joked he could bring in an old bottle of whiskey from a cupboard at home.
From midnight until dawn, hour by hour, I sat there beside Aaron. Nurses brought in heated blankets and wrapped them around us. I watched the respirator pump air in and out of Aaron's lungs. Monitors clicked and flashed numbers. I listened to frightening beeps and alarms that surround you inside intensive care units. Even though he was heavily sedated and asleep as far as anyone could tell, tears still fell down Aaron's face and I would dab at them with tissue. I don't know if he could hear me from under all those drugs, but I spoke to him anyway.
I looked out the hospital window and watched the sun come up over the city. In the stillness and beauty of the sunrise I came to the conclusion I was incredibly blessed. It's true I was hurting so badly I had to remind myself to stop holding my breath, but I was just so thankful to have been chosen to be this brave little man's mother.
When life brings these long, dark nights of crisis we can respond to it three ways. You can kick against it and cry, "I don't need this!" You can go numb, walk around defeated and unreachable. Or -- and this is the most gut-wrenching, allusive challenge -- you can be thankful. Being grateful brought peace in the very moment of my life when there was nothing to feel calm or at peace about.
Not only did Aaron survive the night, but he had balled his hands into tiny fists just as if he were fighting. Catscans still proved major brain damage, and Aaron wasn't responding with any sort of eye tracking to give us hope he would see again. Over the next few weeks the threat of losing Aaron was replaced with the knowledge we were still facing a dangerous heart defect, as well as trying to encourage a blind, paralyzed, and severely neurologically damaged child that his life WAS precious and his life WAS worthwhile.
One unforgettable moment was when I was holding Aaron in the hospital room and rocking him. His eyes stared off into space and he didn't seem to know or care I was holding him. I started singing one of the silly songs I knew had been his favorite before surgery. Aaron giggled and I about fell out of my chair with joy! This was tremendous news. It meant he remembered the song and that he could comprehend humor.
Later that week my older daughter took a baby toy and held it up in front of Aaron's face and his eyes followed it. Nobody believed her so she did it again, and sure enough, Aaron was indeed watching the toy. His eyesight was returning! When we finally took Aaron home and walked through our front door with him in our arms it was a noisy celebration.
Due to the stroke, Aaron had to relearn to swallow and chew. He was only able to communicate via sign language, and was not able to sit or crawl. When Aaron was three we flew him to Fort Worth, Texas, for his third open heart surgery. At the time, this was one of only two children's hospitals in the world that had the experience to keep Aaron off the bypass machine. Doing so was important because it drastically reduced the risk of another stroke. It was a successful surgery, and one surprising result was Aaron then began to speak and no longer needed sign language.
Today Aaron is in elementary school and has been progressing in his recovery, although it's been slow. He uses a power wheelchair, and every weekday he has some kind of scheduled therapy or appointment with medical professionals. He tries very hard, but he will always be behind his peers in education and his abilities. We do not know the long term prognosis for children with HypoPlastic Left Heart Syndrome, but medical advances happen rapidly. Children born today with this same heart defect have much better odds of survival.
Trains, cars, motorcycles and video games all hold his fascination. We do our best to accommodate his special needs so he can experience the wonders of childhood. We watch him laugh and play ball with his dog using his one good hand and it's hard to believe there was a day when doctors were asking us, "When do you want medical intervention stopped?"
(A note of thanks: There is no way to remember each individual whose helped us down this road, but all your faces are locked in my heart. I am grateful for all the friends, family, my dear mother, teachers, therapists, cna's, medical professionals, Dr. Elliot Hall, the late Dr. Allen, Dr. Tam, Dr. Leonard, Dr. Garabedian, Sacred Heart Medical Center, Cook's Children's Medical Center, Wishing Star, Ronald McDonald House, Dave Clark and the therapists at St. Luke's Rehab for Children -- thank you for keeping me from walking this road all alone. And a huge thank you to BJ & Jenny Marowitz for the use of this web page and your endless encouragement. Love, Lisa.)
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