Seven years ago today, September 26, 2010, our little Trey was born. We were so excited to be getting our second baby boy. He was 100% adorable and absolutely perfect, and life was not as nearly as crazy as I'd pictured having two kids would be. Five days later, everything in our lives changed. Trey was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), and was Life Flighted to Primary Children's Hospital. In the seven years since then, Trey has endured three heart surgeries and countless hospitalizations. He has endured more physical pain than most people deal with in a lifetime, and yet he is happy and cheerful and loves life. Seeing Trey this weekend has been a wonderful reminder to me that miracles do happen, and that WE CAN DO HARD THINGS. It has been so hard to watch Lolly endure all her trials the past two weeks, but looking at Trey reminds me that she will, one day, be home and happy again.
This post was written as a tribute to Trey on his 5th birthday, posted on our family blog in 2008.
Happy Birthday T-ray! We are so grateful you're part of our family!
(Trey- 5 years old)
Warning: This post is VERY long (seriously- it's probably longer than any post EVER written in the history of blogging). That said, it was important for me to write. For a long time, I've wanted to write a history of Trey's amazing life. When I think back to all the experiences we've had over the past five years, I can't help but feel overwhelmed with gratitude- to my Heavenly Father, to my husband, to Tyler (for always keeping our life normal), to our wonderful families and to our friends who have helped, supported and encouraged us through many difficult times. I doubt that anyone will be interested in all these details (because this post contains A LOT of details), but I hope that for anyone who does read it, that you will see that prayers are answered and that miracles do happen.
Trey turned FIVE a few weeks ago. Although I've never been very good with words and am even worse at expressing my feelings, I want to show why this is such a big deal to us. The night before Trey's birthday, Ben and I spoke of our gratitude that he reached this wonderful milestone, and reminisced about all the miracles in his life. We are overcome with joy that we've been blessed to have Trey for five years.
Trey has been such a wonderful blessing in our lives. It's hard to even put into words how special he is. Trey is so kind, funny, helpful, loving, happy and tender-hearted. Trey perfectly exemplifies the scripture Mosiah 3:19: "...[he] becometh as a child, submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon him, even as a child doth submit to his father." Trey has had to be submissive and humble his entire life. Time and time again, he has had to endure painful, scary and terrible things. We have held him and comforted him, and he trusted us completely as he dealt with every trial presented to him. He has had to submit to our will and take terrible medicines, wear oxygen cannulas, have feeding tubes, blood draws, x-rays, breathing treatments, hundreds of pokes and pricks and blood draws, sickness, and pain, and has had to be handed to complete strangers for surgeries and cath labs. Despite everything, Trey is happy and loving and wonderful. What an example he is to us. We have learned so much from our little Trey, and are so thankful for him every day. We have seen Heavenly Father's hand in preserving his life and helping him to endure.
For anyone still reading, I hope this shows you what a wonderful child Trey is, and what a privilege it is to have him as a son. I sincerely hope that this doesn't come across as "poor us" or "look at all that we've endured." Although many of our experiences over the past five years have been hard, Trey has had much more difficult trials. We wouldn't trade the past five years for anything. We have loved Trey and have taken care of him the best we could, but we know that any parent in our situation would do the same thing for their child.
And now...Trey's story:
My pregnancy with Trey was very normal. At our 18-week ultrasound, everything looked perfect. I specifically remember the ultrasound tech pointing out all four chambers of his heart. About three months before my due date, we moved from American Falls, Idaho to Tremonton, Utah. About a week before he was born, at my regular check-up, my doctor became concerned because I was measuring small. He immediately did an ultrasound, but found nothing abnormal. Unfortunately, he didn't look closely at Trey's heart- he certainly would have found something very abnormal. A few days later, on September 26, 2003 at 10:14 a.m., Trey was born.
Just after 6 a.m. that morning, I woke up having mild contractions. I looked at the clock, and knew Ben would be downstairs, eating breakfast, before he headed out to the dairy. At that time, we lived in a two-story townhouse. I didn't feel like getting out of bed, so I called him on his cell phone, and told him that baby Trey would probably be born that day. He asked if he needed to stay home, but I told him to go to the dairy since it would probably be a long time still. I told him I'd call when I needed him home.
I called Ben periodically throughout the morning, updating him. My contractions weren't terrible; it would still be a long time. Later, I reported that my contractions were getting worse- he needed to start finishing up, but I wouldn't need to go to the hospital for a while. Then I called to tell him he should probably start heading home (the dairy was about 20 minutes away). About that time, my contractions were really getting painful. Right as Ben drove up, my good friend, Emily, who lived nearby, showed up with her two little boys. I'd spoken with her earlier in the day, and she knew I was in labor. She'd come to get Tyler so I could get ready to go to the hospital. When she walked in, I was down on the ground, on all fours, having very painful contractions. But there's always time for a picture, right? Ben had just walked in the door, and still in his dairy clothes, got down on the floor beside me for a family picture before we left for the hospital. :) (P.S. Don't worry...the curlers were out before we got to the hospital!)
Emily left with Tyler. I was in a ton of pain. Ben asked me if I wanted him to shower or if we should just go to the hospital. We lived just four blocks from the hospital, and I thought we had plenty of time, so I told him to go ahead and shower. I followed him upstairs. While he was in the shower, I decided to take a quick bathroom break before we left. Just then, my water broke, and with the water came the top of Trey's head. It was dark purplish, and I mistakenly thought it was the umbilical cord coming out. I knew if would be very dangerous to have a home birth with the cord coming first- didn't they do emergency C-sections for situations like this? Of course, Ben's shower came to a very quick end..he must have gotten dressed in record time. I wasn't quite sure what to do. Should I stand on my head (really) and wait for an ambulance to come? Things were happening very quickly, and I was sure Trey would be born before an ambulance could get to our apartment. If the umbilical cord came out first, Trey's life would be in danger. I knew that we could drive the four blocks to the hospital much quicker than they'd be able to find us. Ben, of course, left the decision up to me. Although he had delivered many baby calves, neither he nor I wanted him to be the one to deliver our baby boy. I told him we needed to get to the hospital- fast. I have no idea how I made it down an entire flight of stairs and out to the car. I remember sitting sideways in my seat, and being
really annoyed with Ben's driving on the way to the hospital. Ben ran in the front doors. I'm not sure what he said, but within seconds, I was in a wheelchair and someone was running down the hall of the very tiny hospital with me. As I mentioned in an earlier post,
my doctor was in Brigham City at the time, delivering the darling baby girl of my good friend, Rachel.
When we got to the delivery room, there were 8 or 9 nurses scrambling to get things ready. They told me I had to lie down on the bed. I told them NO WAY- I really didn't feel like moving anymore. But several people lifted me up, and Trey was born, less than 5 minutes after we'd walked in the door. Trey must be an adrenaline junkie- he loves doing things in a very exciting way!
We were only in the hospital for 24 hours. There were many nurses who told me that Trey was absolutely "perfect." I remember one nurse told me not to be alarmed by his blue fingers and toes- she told me it was very normal for a newborn.
My mom drove up from Cedar City the day Trey was born. She took care of Tyler that first night, and had birthday signs and balloons waiting for Trey when we brought him home from the hospital the next day. I think she even made him a birthday cake. :) We had a little birthday party that night to celebrate Trey's safe arrival.
In the first few days, I realized that there were a few things about Trey that weren't quite right.
#1- Blue fingers and toes. His were quite blue- all the time. But I wasn't worried because I had been told by the nurse that it was normal.
#2- He was so tired. Yes, I know that all newborns are VERY, VERY sleepy, but Trey was really never awake. He would wake up to eat every 2 or 3 hours, but he'd fall right back asleep. He slept and slept and slept. The picture below was taken because it was one of the few times we actually saw him with his eyes open. I was worried enough about his excessive sleepiness that I called the hospital and spoke with one of the nurses. She told me, of course, that all newborns are very sleepy, and that I shouldn't worry about it.
#3- Trey was a very poor eater. I breastfed Trey. He was really good at latching on, and acted like he was starving, but then he'd fall quickly asleep. I was worried that he wasn't getting enough to eat, so I once again called the hospital. The nurse I spoke to told me that it was very normal and not to worry.
#4- The first time I gave him a bath at home, Trey got very upset. When he screamed, he turned very purple. My mom and I quickly wrapped him up, and he seemed fine afterwards.
Trey was born on a Friday. On Sunday, most of Ben's family came to see Trey. The had been at the baby blessing of our niece, Hannah, and came by before heading home. Trey slept the entire time they were there.
My mom had to leave on Tuesday, September 30th. My parents were building a house in Cedar City, and she needed to get back and help my dad. My family planned to come up that next weekend to watch General Conference and meet baby Trey. Before she left, my mom made us a fabulous dinner- her version of "Cafe Rio" Burritos.
My mom with the boys right before she left.
That evening, around 11 p.m., I nursed Trey, and he started screaming. The other four days of his life, he had mostly just slept. We'd hardly even heard him cry, so it seemed very strange that he was screaming. It was quite alarming because he was inconsolable. We had no idea what to do. Ben got out of bed, and we took Trey downstairs. He was screaming very loudly, and we didn't want him to wake Tyler or the neighbors. I handed him to Ben and called the hospital. As late as it was, I had to speak to someone in the ER. I felt silly calling, but really didn't know what else to do. I explained what was going on- our newborn baby was just screaming. I told her that I'd eaten Mexican food that night, and that I was nursing him. I asked if what I'd eaten could have caused his extreme behavior. I asked her if I should bring him in to the ER, but she concluded that it was probably just the food I'd eaten- after all, there really were no other obvious symptoms. I wished I had some gas drops, and decided I'd call my sister-in-law, Gwen, in the morning. I knew she'd dealt with feeding problems with her little girl.
Finally, Trey settled down somewhat. He had stopped screaming, and it sounded like he had the hiccups. I figured that the hiccups were from being overstimulated, and didn't worry. At that point, both Ben and I were completely exhausted. We took him up to bed. I put him in his car seat next to our bed. I rocked him back and forth while I tried to get a little rest, but the hiccups continued. I was in and out of sleep all night- worried about Trey, but not sure what to do.
That morning, Wednesday, October 1, 2003, Ben's alarm went off at 6 a.m. I was so tired, but rolled over to discuss things with him. Trey was still hiccupping, and I was very worried about him. I told Ben I was planning to take Trey in to our family doctor as soon as his office opened at 9 a.m. I considered taking him in to the ER right then- I could run in quickly with Trey and have them look him over. If I went to the ER before Ben left for the dairy, I wouldn't have to deal with taking Tyler, who was one, to the doctor with me later on. But then I thought of the cost of a visit to the ER- was it worth hundreds of dollars for something that was probably nothing? What would I tell them when I walked in, "My baby has had the hiccups all night"? Would they laugh at me?
I couldn't decide what to do- go now, without Tyler, and pay lots of money, or go later, with Tyler, and just pay for an office visit. Then I had a feeling that the money didn't matter- I NEEDED to go to the ER (I know now that it was the Holy Ghost). I quickly got dressed, put Trey in his carseat, and drove the four blocks to the hospital.
When I walked in the door, I was greeted by a nurse. I recognized her voice- she was the one I'd called the night before. She took us back to an examining room, and asked me to undress Trey. At home, I had just seen Trey by lamplight, and it was still dark outside when I'd left the house. But under the bright lights of the examining table, I was shocked. Trey was dusky purple, and his skin was very blotchy. The nurse started checking Trey, but seemed very calm. She told me that his temperature was VERY low, and asked if I had someone I could call to come be with me. I told her my husband was at home with our other son, and that he was getting ready for work, so I wasn't going to call him. She asked me again a few minutes later if I'd like to call my husband. I thought it was strange. Why did I need to call my husband? I had no idea what was going on. No one let on to the seriousness of the situation. But then, all of a sudden, I was heard them say "Life Flight" and "get the doctor here." I was in complete shock. No one had told me that things were bad- all I knew was that Trey's skin looked dusky and that his body temperture was very low (I think it was in the low 70's at that point), but I didn't know what any of that meant.
I called Ben, but I had no idea how to tell him or even what to tell him. I didn't have a clue what was wrong or why they were calling Life Flight. Ben called our good friends, Emily and Tony to see if he could bring Tyler over. Tony ran right over and carried Tyler to their apartment. Emily held him and rocked him and took care of him all morning. Ben was there very quickly , as well as the local doctor. I asked the doctor what in the world was going on. He said he thought Trey had a very bad case of pneumonia. Immediately, I felt sick to my stomach, thinking I'd probably caused it by putting him in contact with so many people. Ben and the doctor gave Trey a blessing, and we waited for Life Flight.
Ben and I both called our parents. That was so hard. The news was so surprising to everyone. All we knew was that Trey was very sick and that he was being sent to Primary's. It was hard to have so little information to give them. Ben's parents were getting kids ready for school, but said they'd leave as soon as they could. My parents couldn't believe it- my mom had been there the evening before, and everything had been fine. It was hard for anyone to believe that Trey could become so sick so quickly.
I heard the nurses making arrangements for Trey on the phone. At first, they were going to have him sent to McKay-Dee Hospital in Ogden. Then they decided to have him sent to Primary Children's Hospital in SLC. That was when I knew it was really bad. The kids who are REALLY sick go to Primary Children's. I'd been there when I was in Young Women's. We went on a tour of the hospital. I remembered seeing all the little sick children, and feeling so sad for them.
While we waited for Life Flight, all I could do was stand there and watch. I remember seeing Trey's tiny little body, lying on the table, with so many bright lights shining directly on him in an otherwise dimly lit room. People were scurrying all around him. I knew that heaven had to be aware of this very important scene playing out in a tiny hospital in Tremonton. I knew we- and Trey- were being watched over.
Everything seemed like it was a dream. Life Flight finally arrived. There were two nurses and a pilot. The nurses were nothing short of amazing. One of them, looked Trey over, asked me if he was a poor eater. She asked if he had a good latch-on but no energy to eat. I told her yes, and she immediately diagnosed him as a "cardiac." No one at the hospital had even mentioned that word. Ben and I looked at each other- "heart problems?" It was more information that we could handle. It was probably a blessing that we were in shock.
No one at the hospital had been able to get an IV in Trey, but the Life Flight nurse removed his belly button stump and placed an IV without a problem. She started telling everyone what to do- which medications to administer and a million numbers and words we'd never heard. After stabilizing Trey, they put him in the incubator of the stretcher and prepared to leave. I begged them to let me go, but they refused. I'd never felt so worried or helpless in my entire life.
Ben's parents had arrived by that point, and we watched them load Trey into the helicoptor. I remember standing in the parking lot with my mother-in-law. It was now a beautiful, bright day. We stood and watched the helicopter go up and up, and watched until it faded from view. I wondered if that would be my last memory of Trey while he was still alive.
We hurried to our apartment, showered, and packed. We didn't know how long we were packing for. We didn't even know where we were going to stay or what we were in for. I didn't fit into ANY clothes- maternity clothes were too big, but my regular clothes didn't fit...that was a nightmare. We got Tyler from our friends' house, and headed to SLC. My mother-in-law drove us down in our little Toyota Camry. Ben and I were in no condition to drive. I sat in back with Tyler.
The hospital had given us a map to Primary Children's. It was incorrect, and we got lost trying to find the right road. Finally we found it, and Ben and I RAN into the ER. We were told we were in the wrong place, and had to run to the other side of the building to go in the main doors. We didn't even know where to go, but my dad's sister, Aunt Linda, was there, waiting for us. What a blessing it was to see a familiar face. My dear cousin, Laurie, arrived to be with us a short time later.
Trey was up on the fourth floor in the NICU (Newborn Intensive Care Unit). It seemed like we had to wait an eternity for the elevator to come. I think I nearly had a panic attack- being so close to where Trey was, but having to wait so long to get to him. The elevator finally came.
We made it to the NICU, but had no idea what to expect. We had to remove our rings and watches and scrub up to our elbows before we were allowed in to see Trey in his private room. Trey did not look like the same baby I'd taken to the ER that morning. He was so puffy- he looked liked he'd gained several pounds. He was intubated (had a breathing tube), and was unconscious.
Two doctors (Dr. Cowley and Dr. Frank) took Ben and I into a private room to give us the news. Trey had what was called Hypoplastic Left Heart Syndrome (HLHS). In very simplified terms, the left side of his heart was severely underdeveloped- unusable. Dr. Cowley was wonderful. He was so kind and caring. Ben and I were so young- I was 22; Ben was 25. We had no idea what was going on. We had no idea about heart problems. And I, of course, had thousands of questions. He was wonderful and explained everything.
What about his 18-week ultrasound?- the lady had showed us all four chambers. Although many cases of HLHS are detected in utero, at times it is unnoticed. The left side must have stopped developing soon after the ultrasound. And the blue fingers and toes, sleepiness, purple color when crying, and poor eating habits- classic signs of a "heart baby." On their own, each of those traits can be normal, but when added together, they can be signs of a very serious problem.
Why was there no real sign of a problem until he was 5 days old? A very simplified answer: The right side of the heart pumps blood to the lungs. The blood receives the oxygen, then the left side of the heart pumps the oxygenated blood to the body. When a baby is in utero, its heart functions differently. The baby has a "ductus arteriosis"- which is a tube that basically allows the blood to bypass the unnecessary routes, or take a shortcut through the circulatory system. This PDA (patent [or open] ductus arteriosis) is no longer needed once the baby is own- he has to breathe on his own, and his heart has to do the work for his own body. The PDA normally closes within a week. Trey's PDA remained open until the night he started screaming- it was basically his lifeline, and what was keeping him alive. Since the left side of his heart was useless, his open ductus was allowing the right side of his heart to compensate somewhat. When his ductus closed, his body and brain were no longer getting the blood flow that they needed, and his lungs were being flooded. (Knowing this makes his screaming and hiccuping make a little more sense- his hiccups were probably him actually gasping for air).
Dr. Cowley told us we had three options: 1. Compassionate care. We could take Trey home and love and care for him until he passed away. 2. Heart Transplant. At that time, they didn't do heart transplants on children at Primary's (they do now!). In order to get a transplant, we would have to move to California or Colorado, (where most transplants are done), and get on a waiting list. We were told that children often die while waiting for a heart, and there was no guarantee that Trey would get one. 3. Three palliative surgeries (I had no idea what that meant at the time...)- Three different operations to make Trey's half-a-heart somewhat usable. Each surgery was just a temporary fix...basically to buy some time. Twenty years earlier, HLHS was a death sentence. Repairing a heart like Trey's was a relatively new thing, and they weren't sure what the long-term outcome would be. We asked the doctors what Trey's quality of life would be if we decided on the three surgeries- they didn't make it sound very promising. They gave us the statistics- the mortality rate and the chances of surviving surgery. Nothing was sugar-coated.
We, of course, did all the research we could in a very short amount of time. My family had arrived at the hospital at that point. My brother and sister went down to the hospital library to research HLHS. My parents met a family who was waiting for their newborn HLHS son to get out of surgery. He was one day younger than Trey. Their baby had been diagnosed with HLHS half-way through the pregnancy, so they had spent several months researching. They had decided that the three surgeries was the best route to take. My mother-in-law spoke to Trey's Life Flight nurse, who told her that if she had a child with HLHS, she'd take that child home to die rather than make him endure through all the surgeries, since he would have a terrible quality of life.
Ben and I decided that as long as Trey was alive, we needed to do all we could to fight for his life. If Heavenly Father wanted to take him, he would. Waiting for a heart transplant did not sound like a good option, so we decided to go for the three surgeries. Surgery was planned for two days later, Friday, October 3, 2003, when Trey was one week old.
We were overwhelmed by the outpouring of love from friends and family. It was such a crazy time, but we were supported by so many family members who came to the hospital. My grandparents had an apartment in downtown SLC, and let us come and told us we could stay as long as we needed.
At the hospital only two people were allowed at Trey's bedside at a time, and no one under 16 was allowed in his room. We had to get special permission to have a baby blessing for Trey the day of his surgery. All our family members were allowed in the room- even Tyler, who got to see Trey for the first time. Trey's blessing was a few hours before his surgery was scheduled. Most of our families were able to come. It was a wonderful experience- everyone dressed in Sunday clothes. We all had to scrub our hands and arms. Even though Trey's hospital room was crammed with people, it was peaceful and quiet and very reverent. Ben gave Trey a beautiful blessing while he slept peacefully in his bed. [Trey loves to hear the story of his blessing day- I tell him he got to wear a very special blessing outfit- a nice white diaper. He thinks it is so funny!]
Tyler did not like seeing Trey, and was very upset. He had no idea what was going on with his life or with his baby brother.
After the blessing, Ben and I got to hold Trey for the first time. It took two nurses to lift Trey into our arms to keep all the tubes and wires in place. We held and talked to Trey- and had no idea if it would be our last time holding him alive. It wasn't long enough- all too soon we had to walk him down to the operating room.
The first of the three surgeries for a HLHS baby is called "The Norwood Procedure." Trey was not able to have "The Norwood." His heart had tried to compensate for his heart problem by creating coronary sinusoids (extra blood vessels attached to his heart). Normally, during open heart surgery, the body is cooled and the heart is stopped. The patient is put on a "heart-lung machine." The machine oxygenates the blood and pumps it through the body while the heart is being repaired. Trey's coronary sinusoids made it impossible for him to be hooked to the heart-lung machine, and the doctors had to figure out a different approach to fixing his heart. In the cath lab, Dr. Cowley put a stent (a wire tube) in Trey's PDA- to keep it open. Then the surgeon, Dr. Hawkins, opened Trey's chest and put bands on his pulmonary arteries to limit the amount of blood that traveled to Trey's lungs (remember- his lungs were being flooded, while the rest of his body wasn't receiving enough blood). They had never done this combination of procedures, but we were very hopeful that it would work, as it was really Trey's only hope.
While Trey was in surgery, a nurse came out every hour to update us. Each time she came out, we just hoped she would tell us he was still alive. The whole procedure took several hours. We were finally able to see Trey in the PICU (Pediatric Intensive Care Unit) about an hour after the surgery was complete. We weren't really prepared for the way he would look. Besides the big incision down his chest, he had tubes and wires and monitors everywhere. He was still very swollen. The best heart nurse- Judy- was assigned to Trey for that first night. We were given a "sleep room" at the hospital that night- the rooms were reserved for the parents of the most critical kids. They wanted us at the hospital in case something terrible happened that night.
The next day, Saturday, October 4, 2003 was General Conference. We spent the entire day at the hospital with Trey, waiting and watching by his bedside. That night, after the priesthood session, BYU had a football game. My grandpa Holman invited Ben to come watch the game with him at their apartment. Ben was excited to have a break from the hospital, but I wanted to stay with Trey. A while after Ben left, Trey actually woke up. I couldn't believe it!!! The nurse and I were so excited! I called Ben, and he got the the hospital in record time! I hadn't been sure if we'd ever see Trey awake again. We really had no idea what to expect. Trey had been in really bad shape when we took him to the ER in Tremonton. His oxygen saturations had been so low for so long that the doctors feared he might have some brain damage, although they had no way of knowing at that point. Needless to say, we were thrilled to see him finally wake up.
My sweet cousin Laurie, her husband, Chris, and their family (the Funks), graciously offered their basement apartment for us to use. They lived near the hospital, and my mom stayed there so she could help us and take care of Tyler (when he wasn't away with my mother-in-law). I stayed at the hospital with Trey as much as I could. Eventually, Ben had to return to take care of our dairy in Bear River City (his brother, Greg, had been staying at our apartment and taking care of the dairy). Every evening, after he finished at the dairy, he drove an hour to the hospital to visit Trey each night. Every night, from 7 to 8 p.m., all parents had to leave the PICU while the nurses gave report. We'd go to dinner at the "Rainbow Cafe" (the hospital cafeteria) with my mom and Tyler.
Trey was in the hospital for just over two weeks. He was slowly weaned off his medications and monitors, and moved out of the PICU and onto "the floor" (where the parents learn to take care of their kids by themselves). Ben and I had to take a CPR class and learn to place a feeding tube down his nose in case he pulled it out (which he did MANY times at home). Finally, they told us he was ready to go home. I was shocked...they wanted us to take care of him??? We didn't know anything about taking care of a "heart kid." It scared me to death. How on earth did they expect us to keep him alive? The majority of his care would fall on my shoulders, and I knew n-o-t-h-i-n-g.
Although we were worried, we were so happy to be going home. We didn't know what to expect, but we went with faith. If Heavenly Father had preserved Trey's life so far, he would certainly bless us to know how to care for him. The first few days at home were absolute madness. Luckily, my mom came along for the fun.
Trey had a check-up at Primary's a week after his surgery. His oxygen saturations (how much oxygen was in his blood) were very low, and he had to go on oxygen. That took some getting-used-to. We had to have a very long oxygen cord for our two-story townhouse so that I could carry Trey everywhere. Tyler was very good, at least for a one-year-old, to watch out for Trey's oxygen cord so he wouldn't pull it or trip on it.
Trey had tons of meds to be given all through the day and night. He was too weak to breastfeed, so I had to pump, bottle feed what he had energy to drink, and pour the rest into his feeding tube. Gradually, I taught him to nurse again. We couldn't pick him up under his arms because of his incision (to this day, I have to remind myself that it's okay to pick a healthy baby up like that). He was still a very sick little boy. There were many times that I called a doctor in the middle of the night to ask questions and many trips to the Emergency Room. We had so much to learn.
We eventually started to get the hang of things and feel more comfortable with Trey in our care. Trey was so fragile and sick that we didn't take him anywhere. We didn't have many visitors- anyone who came over had to scrub their hands. Any kids that came had to stay far away from Trey. Tyler couldn't go to nursery at church. If he got sick from the other kids, it could be very dangerous for Trey. Ben and I traded off going to church. One of us would go to the first two hours of church, then go home so the other could go to sacrament meeting. We decided that the person at home should have a "home nursery" for Tyler, and spend some time teaching him. Ben's version of home nursery was a little more relaxed than my own. :) I will add- life was exhausting at that time!
Every few weeks, we'd drive to Primary's for a check-up with Dr. Cowley, Trey's cardiologist (heart doctor). We also had to see Trey's pediatrician frequently. We were always going to the doctor to weigh him or check one thing or another (with all the time I
had to be away, can you see why I became such a homebody???).
At one check-up at Primary's in December, Dr. Cowley was worried about Trey, and wanted to do a heart catheterization. (FYI- For a heart "cath," a small catheter, or tube, is interted into the patient through an artery in the groin. The catheter is guided up to the heart to do different tests and procedures.) Trey's heath cath was scheduled for December 23, 2003. We weren't excited about that date, but it was the only one available. Trey's heart cath went fine, and he only had to stay in the hospital for one day. He was released on Christmas Eve. We got home late in the evening. We made a simple Christmas Eve dinner before putting the kids to bed, and enjoyed a very quiet Christmas at home, though we were sad that we didn't get to celebrate with either of our families.
During the cath lab, Dr. Cowley had noticed some blockages in Trey's heart and determined that he would need his next surgery right away. Trey's second surgery was scheduled for January 4, 2004. We tried to prepare ourselves for another difficult surgery. We had a photo shoot with the boys together. I learned to take LOTS and LOTS of pictures...I wanted to preserve every memory of our family together, never knowing how long it might last.
Tyler and Trey- December 2003- a few days before Trey's second surgery)
Thinking of putting Trey through another surgery was very difficult. He was alive, and doing okay. Our biggest fear was that he wouldn't make it through his surgery. We knew that if he did make it through his surgery, he would, at least temporarily, be worse off than when we brought him in.
This second surgery was much more risky for Trey than the first. Normally, a child with HLHS has what is called "The Norwood" procedure. Trey wasn't able to have this surgery initially because of his coronary sinusoids. So for his 2nd surgery, since his sinusoids had corrected themselves, he had to have The Norwood procedure AND The Glenn procedure (the normal 2nd surgery). The two surgeries together would be very difficult and risky, but there was no other way.
On January 3, 2004, the night before Trey's surgery, my family met at the Funks' house. They had once again invited us into their home while Trey was in the hospital.
Trey's second surgery was very rough. The surgeon, Dr. Hawkins, came out after several hours through and told us that things were not going well. He basically told us that he didn't know what else to do, but he was going to go back in the OR with Trey and would figure something out. Not very comforting words from the man who holds your child's life in his hands! We sat there, waiting and waiting for him to come back. It was getting very late. More than two hours had passed since anyone had come out of the OR to talk to us. We could only imagine the worst.
Finally, when I could wait no more, I called the PICU and asked if they had any news about Trey. The nurse told me that Trey had been out of surgery for several hours, and they had been wondering where the parents were. We could not believe it! The surgeon had forgotten to tell us he was done, so we waited and waited, thinking Trey's life must be hanging by a thread. Well...he was alive and well in the PICU, and the nurses had been thinking we were deadbeat parents- not wanting to see our son after his heart surgery.
Recovery from his second surgery was much more difficult than the first. We knew him now. It was so difficult to see him so miserable and in so much pain. Trey also had a strong personality. He was very stubborn. The nurses wanted him to drink from a bottle so they could monitor how much fluid he was getting. But he would NOT eat. He just wanted to nurse, but they really wanted him to take a bottle. A speech pathologist came many times to work with him to get him to take the bottle, but he would not take it. Finally, they let him nurse (when he had the energy to), and he did great and was happy (or, happier, at least).
Trey had to stay in the hospital for less than two weeks after his 2nd surgery. Taking him home afterwards wasn't nearly as frightening as the first time. This time, however, he had a much more difficult recovery. He had contracted RSV in the hospital, and was completely miserable. My mom came to help us once again, and taking care of Trey was a full time job for the three of us. This time, he had to be fed and have medications every few hours, day and night. He was miserable when he was awake, and we were very grateful for his feeding tube so that we didn't have to wake him up to feed him at night. We were all completely exhausted every night, and had different feeding and sleeping shifts. One night, Trey was asleep in his bed in our room, and my mom was taking one of the night feedings. Ben and I were asleep, and my mom was exhausted. After she fed Trey, she collapsed on the bed next to me. [I'll bet none of you have slept in the same bed with your mom AND your husband! :) ]
Trey had a very slow, very long recovery. Gradually, we started to see a light at the end of the tunnel. Trey got better, little by little, and stronger. When he quit feeling miserable, he became quite a pleasant, happy baby.
A lady in our ward knew he'd been blessed in the hospital, but she was kind enough to make this beautiful blessing outfit for him afterwards, just so he'd have one).
Trey's physical development was very delayed. We didn't know if it was because he had brain damage (we no longer think he does) or because he'd spent so much time flat on his back in the hospital. (Now, we figure that late physical development runs in the family- Luke didn't walk until he was 18-months old.) At nine months, Trey wasn't even rolling over, so he started physical therapy. He also had a speech therapist start coming, as he was behind in that area as well. Curt and Kathryn did a wonderful job- Trey was walking by 14 months- quite a feat for a kid who was constantly being pulled to the ground when his oxygen cord was caught on something (which it often was).
When Trey was in the hospital for his first surgery, by some miracle, there were three other HLHS babies there at the same time. Three of the boys were born three days in a row- Kyler (Sept. 25), Trey (Sept. 26) and Jaxsten (Sept. 27). Dallin was four months older than the other boys, and has since had a heart transplant. We have kept in touch with these friends, and have been a great support to each other.
HLHS friends reunion- June 2004
September 2004
Trey's first birthday was on National Heart Day (yes- that's really a holiday!). It was a wonderful, happy day. Lots of our family members were able to come help celebrate. We had a big heart-shaped cake. My friend, Rachel, and her brother, Travis, helped me make a DVD with music and pictures of Trey's first year. It was a wonderful, happy day.
Trey's birthday party
A few days after his "real" birthday, we had another birthday party at my parents' house in Cedar City with our heart friends. It was a happy time for all of us- all three boys had made it to their first birthday! [All three boys made it to their 5th birthday, as well!]
In April 2005, when Trey was 1 1/2, we moved from Tremonton, Idaho to Declo, Idaho. I was pregnant, and in June of that year, we had an ultrasound. We found out that we were having a baby girl- and that she had HLHS and Turner's Syndrome. The doctors at Primary Children's told us that we were the only family who has had TWO kids with HLHS. Although it was very unlikely that baby Sasha would live to be born (the combination of TS and HLHS gave her a 99% chance of being stillborn), we were very hopeful that she would live. By then, we felt like we knew enough about heart babies, hospitals, doctors and insurance to be able to take good care of her. We were devastated when they could no longer find a heartbeat at one of my regular prenatal check-ups. Sasha was stillborn on July 21, 2005.
In November 2005, we got together with the other "Heart Moms" and decorated a tree for the Festival of Trees- a fundraiser for Primary Children's hospital. We dedicated it to our HLHS children: Trey, Sasha, Dallin, Kyler and Jaxsten. It was a wonderful experience to give back to the hospital we all loved so much.
Early the next year, I was pregnant again. We were hopeful, but very anxious to find out about our baby. Two of our 3 children had been born with HLHS- we didn't have any idea if the trend would continue.
In February 2006, Trey had a terrible ear infection, so I took him to the evening medical clinic in Burley. They checked his oxygen saturations- they were low, and they sent us to the ER. I just needed an antibiotic for his ears, but they wouldn't let us stay- no one wanted such a high-risk patient- even though he only had an ear infection. We were able to get an antibiotic in the ER.
Because his oxygen saturations continued to decrease, Trey had to go back on oxygen and was scheduled for another Cath Lab in March of 2006.
We had planned to go home that same day, after being observed for a few hours in the hospital. However, things did not go as planned. The doctor had trouble getting into Trey's heart the regular route (through his groin), and had to put a catheter in through his neck. Trey's juggular vein was accidentally pierced, and he almost bled out completely. The doctors acted very quickly, and were able to save his life. We were so grateful Trey's life was preserved. He had to go to the PICU and stayed in the hospital for a few days.
The results of Trey's cath showed that he needed his 3rd surgery- the Fontan, and it was scheduled for April 5, 2006. After two surgeries, we'd learned a lot about hospital life, and decided it would be best to park an RV at the hospital. That way, we'd be close by at all times. When Tyler was there, I'd be able to spend time with him. We'd be able to cook our own meals instead of having to eat in the cafeteria all the time. My Grandma and Grandpa Holman were so kind to let us borrow their very nice RV- and even drove it down and set it up for us.
The night before Trey's surgery, my cousin, Laurie, arranged to have her friend, a professional photographer, take some pictures of our family together. She donated her time and took some wonderful family pictures.
Trey was doing so well, and was such a fun and happy boy. He was 2 1/2, and at such a wonderful time of life. It broke our hearts to think of knocking him back again, but we knew we had to do it. There was no other way.
I didn't sleep much the night before Trey's surgery. I dreaded the morning, when we'd have to hand Trey over to the surgeons and wonder if he'd make it. All too soon, morning came, and we watched, helplessly, as Trey was pulled down the hall in a wagon to the Operating Room.
Everything went very well with Trey's surgery. When we went to see him afterwards in the PICU, he was breathing on his own and looked amazing! He had never looked so good coming out of surgery! He was even somewhat pink!
The Fontan surgery changed the pressures in Trey's lungs (that's what it was supposed to do), but it was very uncomfortable for him. In order to keep his lungs dry, he was not allowed to drink for a long time, and even then, he was only given a VERY small amount (a teaspoon) every few hours. Trey was 2 1/2 and could talk and ask for things, and all he wanted was a drink. We had to keep telling him "later." I honestly wondered if he would go insane. He was SO thirsty, and no one could help him. Once in a while, the nurse would let him suck on a sponge sucker- a tiny sponge on a stick that she'd dip in water. Instead of helping quench his thirst, it just made him more angry. That was probably the worst part of recovery...that and not being able to hold him. During heart surgery, they inserted "heart wires" directly into his heart. Afterwards, they kept the wires in place in case they needed to jump-start his heart. He had to keep them in for several days, and we couldn't hold him until they were out- pulling them out accidentally could be fatal for Trey.
Although he couldn't be held, he could play basketball in bed. The day after surgery, all he wanted to do was shoot hoops. We knew he loved basketball, and had brought a little hoop and ball. When he was awake, he wanted to play ball. Ben was so proud!!!
The hospital record for the shortest stay after the Fontan was one week. For a while, it looked like Trey was going to beat or tie the record, but fluid kept accumulating in his lungs, and going home was ALWAYS a few days away. He had chest tubes inserted several times to drain his lungs, was given very limited liquids, and was on several diuretics (medicine to help rid the body of excess fluids), but nothing seemed to work. His lungs would not dry up! He was very dehydrated, yet his lungs stayed full of fluid. The days kept dragging on and on- and home was still a few days away. It seemed like now we were competing for the record of "longest hospital stay after the Fontan."
Ben stayed for several days, but once Trey was stable, he had to get back to the dairy. He drove the 2 hours and 45 minutes from Declo as often as he could.
I stayed with Trey in his room at the hospital. I think I didn't leave the hospital for 10 days straight. That's enough to drive anyone insane! Ben came and took me out for a nice night on the town. We took Tyler and rode Trax (the Polar Express, according to Tyler) and had a great time as a family (minus Trey).
Another night, my family was all going to a wedding dinner for my cousin, Debbie, at the Joseph Smith Memorial Building. I really wanted to go, but I knew I couldn't leave Trey at the hospital alone. My dad came to the hospital and insisted on staying with Trey so I could go. It was wonderful to have a night out see my relatives. Trey had the time of his life with my dad. He was allowed to leave his room, but it was a complicated process to transport him. He was pretty weak, and had to sit in a wagon. He had chest drainage tubes [small tubes that had been stuck through his skin, into his lungs (to help drain them), and they were stitched into place]. The tubes each drained into collection boxes, which had to be hung on each side of the wagon. He also was on oxygen, and a large oxygen tank could be placed in the wagon with him. Trey also had an IV pole, which could be hooked to the underside of the wagon and pulled behind. I hope you have a good picture in your head- a very sick little boy, sitting in a wagon, with all sorts of medical equipment inside of and hanging from the wagon, and an IV pole following behind. So my dad, the babysitter, took Trey and his wagon with every sort of medical equipment OUT of the hospital, and walked him up and down the sidewalk on the busy road outside of the hospital. Trey LOVED it! I was going crazy after being in the hospital for 10 days straight- and I wasn't even having terrible things done to me. I can't even imagine how thrilled Trey must have been to have an adventure outside of the hospital. I can picture the two of them, and it makes me laugh. I'm just surprised that the security guards didn't stop him and that people passing by didn't call the police. I'm sure it looked like my dad was running away from the hospital- with a very sick patient. Who goes on a walk with an IV pole? My dad was wonderful, and Trey was a much happier boy. :)
One of our heart friends, Kyler (who we'd known from the start), came in for his 3rd surgery while we were still there. Kyler's room was right down the hall from Trey's, and the two boys often got together for play dates in their rooms or for walks around the hospital! :)
Trey finally was released after 2 1/2 weeks. He was home for about 10 days, then we had to go back to Primary's for a post-surgery check-up. His lungs were filled with fluid, and he was admitted to the hospital once again. I wasn't packed for another hospital stay- we had planned to go home that afternoon. I had been at the hospital for 8 days straight when my wonderful mother-in-law came to "babysit" Trey for me so I could go shopping and out to lunch with some of my sisters-in-law. Trey was in the hospital for 16 days before he was released to go home (again!).
All this time, I was pregnant with Luke. At that point, we had no idea how he was doing. We had an ultrasound scheduled, and I was going crazy, wondering if this baby had heart problems as well. By some wonderful blessing, Trey was released the day before my ultrasound was scheduled. He was thrilled to be home again, and went on lots of 4-wheeler rides with Ben and Grandpa Andersen. Trey's first night at home was terrible. He was getting all his food tube-fed through his nose, directly to his intestines, but he threw up all night, and we knew he needed to go back to the hospital. We went to my ultrasound the next morning...found out we were having a boy and that he was healthy (that baby is now known as crazy Luke). Immediately afterwards, Ben left for Primary Children's with Trey. I could not go back. I needed a break from the hospital. Trey was there for just two days, and was released just days before my sister's wedding, which was a great blessing.
Trey was sick all that summer- he was having a terrible time with his recovery. He had constant diarrhea and no energy. Finally, he was diagnosed with PLE (Protein-losing enteropathy), which is a rare but serious side-effect after the Fontan Surgery. Basically, he'd lose all his nutrition through his constant diarrhea, and at the same time, he retained a lot of water, which made his stomach and face quite puffy. The condition is very similar to the pictures you see of starving children in Ethiopia- very skinny kids with a big pot belly. All summer long, Trey had to go to the hospital in Burley for frequent blood draws. We tried to manage his condition and stabilize his protein levels through medication.
Trey's condition continued to get worse. In July, I was worried about Trey's complete lack of energy, loss of appetite, vomiting, and possible dehydration, and took him to a local doctor in Burley. He thought Trey just had the flu, and prescribed anti-diarrhea medication. Not trusting our doctor, I called Dr. Cowley, Trey's cardiologist, at Primary's, and described the problem. He wanted us to bring Trey to Primary's to be admitted right away. We got there around 10 p.m., and were surprised at how quickly his condition had deteriorated. His heart rate was sky high (near 200) and his oxygen levels had dropped a ton (into the 70's). Even getting 15 liters (that's a LOT!) of oxygen through a breathing mask, Trey's saturations didn't get much above 80. There was talk of moving him into intensive care, but he calmed down and was able to be turned down to 5 liters of oxygen.
The IV team came up to Trey's room. No one told Trey who they were, but he screamed "Not an IV!!!" as soon as he saw the lady. She said she'd never been told that by a 2-year-old before! Trey got some albumin (a form of protein) through his IV and that immediately helped lower his heart rate and improve his oxygen saturations.
Trey was finally diagnosed with Bacteremia, which was basically an infection in his blood- it was literally poisoning him. The PLE had depleted his body of protein, which depressed his immune system, and allowed him to become very sick. Once he was released, he had to receive IV antibiotics at the local hospital for six weeks.
Trey's PLE continued to cause problems. He was constantly in the hospital in Burley, having his blood drawn. The ladies there knew him so well that they'd buy treats for him from the hospital gift shop if they were out of suckers. Finally, in February 2007, his condition suddenly got very bad. He was put on steroids to manage his condition. We had been told that he would probably get puffy and bulk up a bit. But he was VERY puffy- he was so swollen with retained water that he weighed a ton and looked terrible. He didn't have any energy, and was miserable. I took Trey to a basketball game in town, and one person there asked me if Trey was dying. He looked so awful...I couldn't help buy wonder it myself.
My mom had come for the weekend for Tyler's birthday, and watched the boys one evening so Ben and I could go on a date. I worried about Trey the entire time we were gone, and put him in bed with us when we got home. He was so sick that I wanted to be with him during the night. His breathing was so labored that I started to
really worry. I called his cardiologist, at home, in the middle of the night. He told me what medications to give Trey, and how much to give (luckily, we had everything on hand). His medications had been out of balance, and he was basically drowning from the inside. It was terrible, but he looked so much better within a few days of changing his meds.
The above picture was in February 2007, when Trey was 3 1/2 years old. Seven months later, in September 2007, when he turned four, he looked like a different person. He was weaned off his steroids in July 2007. The steroids completely fixed his problem with PLE.
[Post edit: the steroids temporarily fixed his problem with PLE. In the summer of 2009, the PLE came back, worse than before, and caused all sorts of serious problems for Trey. He took three ambulance rides from Idaho to Primary Children's hospital that summer- it was very serious. In October 2009, he started taking a combination of steroids and Viagra- to improve blood flow to his lungs, and to date, he has not had any problems with PLE.]
Trey's last check-up at Primary's was in June 2008. Dr. Cowley was amazed at how well he was doing. He said he'd never seen anyone recover from PLE like Trey has. He also said that Trey looked healthier than many people he'd seen that day that didn't even have heart problems! :) Right now, in October 2008, Trey is doing better than we could have ever expected. He has 5 doses of meds a day (at times, he's had over 20 doses of meds every day). We can't even remember the last time he needed oxygen. He is happy and sweet and kind and wonderful. He loves riding on the 4-wheeler with Ben and playing basketball. He is finally "average" weight and height, after being in the 5th percentile for most of his life. He is happy and has a wonderful sense of humor. He loves to dress like a Superhero and "fight" with Ben and Tyler. Early in his life, we were told that he might have brain damage and that he might be a slow learner. We no longer worry that he might have brain damage- just this week, he started reading- he sounds out words all day long, and counts everything. He counted to 600-something for my mom on the phone a few days ago. He can stand on his head while he counts to 126. He does everything a normal five-year-old should. The only difference between Trey and "healthy" kids is that Trey tires out quite easily. He puts himself down for naps (short rests) several times a day. He is enrolled in preschool two days a week, but often stays home because he is too tired to go.
Trey is amazing and wonderful, and we are so thankful that we didn't listen to the Life Flight nurse who told us his quality of life would be terrible. We think he looks like a pretty happy kid, and we are so thankful that Heavenly Father has allowed him to live for FIVE WONDERFUL years. Thank you to everyone who has prayed for him and for those of you who still continue to. He has been watched over and protected, and we couldn't be more grateful.
And the future for Trey? We're not sure. We didn't know if he'd live to his 5th birthday. Yet here he is. The doctors say that for a HLHS kid, the best time is normally from 3 to 8 years of age. [We're right in the middle of that time, and we're loving it.] After that, many kids have a more difficult time. Some need heart transplants, but some keep going and going with half a heart. A few months ago, I met a beautiful 17-year-old HLHS girl. She plays soccer and seemed very happy and healthy. It gave me a lot of hope to see her. Trey is not on the "list" to receive a heart transplant, nor do we hope for one anytime soon. We've been told that getting a transplant would just be trading one heart problem for another. A transplant would only give Trey a new set of problems. That might be his only option at some point, but for now, we'll deal with what we have. Right now, this is a pretty manageable heart problem, and Trey is doing very well.
We have no idea what is in store for Trey, but each day is a blessing. Every day, I make sure to take lots and lots of pictures. Every night, I check on Trey at least twice before I go to bed- something I've done since he was a week old. Sometimes, I place my hand on my heart to make sure it's still beating. It still is. And hopefully, one day, Trey will get to wear the missionary tie that my dad bought him when he was just a few days old. None of us (except my dad) knew if he'd even make it through the week. And he's still here...five years later!
