I found out in Sept. of '98 that I was pregnant with our third child. This wasn't actually a "planned" pregnancy, but we were VERY excited about it. We like to call it, our little "surprise". Everything during the pregnancy was very normal. We had an ultra sound proformed when I was about 17 weeks pregnant, everything looked perfect. Although, they didn't get a 'good' picture of the babies heart, which wasn't a major concern since I had 2 previous children, both very healthy. I wasn't to concerned myself, I mean really, what are the chances of a baby being born with a "broken heart?" Well, the chances are a lot higher than what I had EVER thought.
Zachary was born on June 2, 1999. He was a beautiful little boy, perfect in every way. He didn't have much hair, just enough to say he had some, he had the most inquizative eyes. Even at birth, he seemed so wise, you could see it in his eyes, he had a wise soul. Poor baby did get daddies nose, but he soon grew into it. (smiles) He was perfect, perfect in everyway ... on the outside.
During the next 2 weeks, everything was wonderful. We had our little angel home with us, Alexis, (big sister) and Nicholas, (Big Brother) could not get enough of little Zachary. They wanted to hold him, change his diaper, feed him, and even bathe him. They were so proud of little Zachary, and they had every reason to be. Zachary loved them too. He couldn't say it yet, but each time one of the kids would walk in the room he would kick his little feet and get so excited. Zachary was a good sleeper, matter a fact, Dan and I were almost a bit conerned that he did sleep so well, little did we know at the time, we had reason to be. He was sleeping 7 hours a night as soon as we brought him home.
When Zachary was 2 weeks old, I brought him to see the Dr., expecting to hear wonderful news. Only, the news I was about to hear was not so wonderful. Zachary had not gained weight like he should have been, he had only gained about a half of a pound since birth. The nurse noted that, and talked with Dr. Applegate, Zachary's dr. Dr. Applegate, came in to look at little Zachary. He listened to Zachary's heart for what seemed to be an awful long time. Finally, Dr. Applegate looked up at me, and calmly explained that he had detected a heart murmur. He continued to listen for a while longer, then, he called in another Dr. to listen as well. Dr. Applegate explained that most murmur's will go away all on their own, and MOST murmurs are nothing to cause concern, but Dr. Applegate wanted to do some follow up testing just to be sure that it was in fact, nothing. I had no idea what was going on. I was so upset that I sat in the parking lot and cried. Even after getting home and hearing from everyone that a murmur is nothing, "Lots of people have heart murmurs," I couldn't shake the feeling that something was wrong with my baby. I knew something was not right, but I could have never been prepared for just how wrong things were.
We were scheduled to have another weight check done 2 weeks from that date, and then a month from that date, Dr. Applegate wanted to check on the murmur again. We never made it even the 2 weeks. Little Zachary seemed to be developing some problems breathing, and eating during the next week. Finally, when Zachary was just 3 weeks old, I knew that something was not right with my baby. A friend of mine came over, and she noticed this also. Zachary's little chest was pumping up and down with every breath he took. I undressed him thinking that he was just warm, but this didn't help. Zachary's almost looked to be panting, like what a puppy or dog would do on a very warm day. At about 3 in the afternoon, I called the Dr.'s office.
I talked with a nurse at the office, at first, she thought that the breathing was just a "normal" baby thing. I informed her that this was not my first child, and that what Zachary was doing was NOT a normal baby thing. I wanted to believe she was right, but I knew in my heart that she was not. The nurse discussed what I had told her about with Zachary's doctor, the doctor wanted me to count Zachary's breaths per minute and take his temp. I never even got the chance to take his temp. After I told the nurse that Zachary was breathing over 120 breaths a minute, she told me to bring him in right away.
I took Zachary in myself, (big mistake) Dan stayed home with Alexis and Nicholas. I arrived at the office, and Zachary was seen right away. Zachary had gained over 1 pound in a week, I thought or maybe I was trying to convince myself, that this was a good thing. The dr. came in and examined Zachary, the first thing I said was, he gained weight, that is good right! Dr. Applegate just smiled, calmly saying, "It is probably mostly water weight." The Dr. listened to Zachary's chest for quite a long time. After what seemed to be an hour, the dr. looked up at me and informed me that the murmur Zachary had was now worse. It was at that time that the dr. thought it best for Zachary to go to the hospital. Our family dr. is a wonderful dr., and I believe that he knew something more serious was wrong, but he was trying to comfort me by telling me that it was probably nothing. He said that the reason for sending us to the hospital was to get some much needed testing done that night. Dr. Applegate informed me that if he were to schedule tests to be done in the office, it could be another 2 weeks before we had any results, by going to the hospital, we could have the test result the next day.
I went home to pick up Dan before going to the hospital. I was a nervous wreck. I honestly don't remember driving home. It was all a daze, like a dream. My vision was blurred from crying, and my head was spinning. My mom was waiting for us at my house when we arrived. She had come to take the other kids to her house. We rushed around the house, trying to get things ready, we figured we would be at the hospital most of the night, and wanted to be prepared.
We first went to St. Mary's hospital which is a wonderful hospital for the normal things. After arriving at St. Mary's a few dr.'s and nurses checked out Zachary. They hooked him to a few different machines, one to check his blood oxygen level which is supposed to be at 100%, Zachary's was less than 70%. We didn't stay at this hosital for more than an hour before we were sent to Devos Children's Hospital, which was only about 10 minutes anyway. Devos Children's Hospital is more equiped for more seroius cases having to do with children. We were admitted as soon as we walked in the door at Devos. Zachary's was put on the PICU floor. That is when all the testing began. He had his blood oxygen levels, his breaths per minute, his heart rate, and his blood pressure monitored constantly. He also had chest x-rays done, and many many doctors coming in and checking him and listening to him breath. They were asking all sorts of questions, questions about heart disease ... Why were they asking us about heart disease, Zachary was 3 weeks old, babies DON'T have heart problems! Dan and I had no idea what was going on. Dan was trying to stay very calm about the whole thing, he kept repeating over and over,"Nothing bad has happened yet." Me on the other hand, I was a nervous wreck. I just had that feeling that I couldn't shake. I knew that something was wrong, I just knew it, all I could do was cry, cry and rub my babies head since I couldn't hold him.
The cardiologist arrived up at the hospital around 10:30 PM, shortly after my dad had gotten there. We were a little unsure why they had called a cardiologist, there couldn't be anything wrong with Zachary's heart, he was 3 weeks old. Or at least this is what we thought.
The cardiologist asked us to step outside of the room for about an hour while he did an echocardiogram on Zachary. Reluctently we left, we did need the break, even though we didn't want to leave our babies side.
We went outside for a breath of fresh air, I paced the hospital grounds for 45 minutes, wondering, waiting and crying a lot. Luckily for Dan, my dad was there, he was talking with Dan about other things, trying to keep Dan's mind off what was going on. Finally, I couldn't take it anymore, and we had to go back to the room. When we got back up there, the cardiologist, Dr. Schneider, was just finishing up. I can remember everything about the next 5 minutes, like it was yesterday. They turned the lights back on (they had them off while proforming the echo), Dan was on one side of me (my right side), and my dad was on the other side of me. Dr. Schneider walked towards us, with 2 nurses. Very calmly he said, "After doing the echocardiogram, I found that your baby had been born with 2 congenital heart defects..... both requiring surgery but they can be repaired." Zachary had been born with an Artrioventriular Canal Defect (AV), this a large hole in the heart that exists where the walls between the upper chambers join the walls between the lower chambers and the valves in the heart are not formed correctly causing major leakage which enlarges the heart causing it to be over worked. Sometimes this defect can be mild and surgery can be put off with medication until the child is a little older. In other cases, like Zachary's, the defect is so severe, surgery is needed in infacy, usually between 6-8 months of age. Zachary had also been born with a Coarctation of the Aorta. This is when the aorta is pinched or constricted. Congestive heart failure may occur which was happening with Zachary causing all the problems. It obstructs blood flow to the lower part of the body and increases blood pressure above the constriction. Zachary's aorta was almost pinched shut causing major problems, high blood pressure in the upper half of his body, low blood pressure in the lower half of his body, and his heart and liver were both enlarged.
We found all of this out on a Thursday night. The rest of the weekend is pretty much a big blur in my mind. Through tears and confusion, we were asking question after question, none of which could be answered. Currently, there is no known cause, cure or prevention of the #1 birth defect. No one knew why it happened to Zachary, no one knew why my little 3 week old baby had to go into surgery, surgery on his little heart, no one knew what could have been done to prevent all this from happening. At about 2 in the morning Zachary's nurse convinced us that we should go home and TRY to get some rest. The nurse unsured us that she would not leave Zachary, Zachary was her only patient that night, and all her attention was going to be on him. She also gave us a phone number to reach her directly if we wanted to check up on things. I think that I got about 2 hours of sleep that night. By 7 the next morning I had taken my shower got a few of Zachary's toys around and made plans for the Alexis, Nicholas and our puppies to stay at people's house, and I was ready to go back to the hospital.
Zachary's was scheduled to go into surgery the following Monday to have his coarc. repaired, only 4 short days after our lives turned upside down. Zachary just laid in his big hospital bed with machines all around him. We couldn't even pick him up on our own. He had so many I.V's and wires hooked up to him, that in order to hold our baby, we had to call a nurse in to help us. I remember sitting beside his bed, and rubbing his soft little head. He just looked at me with those eyes. Those big beautiful blue eyes full of wisdom. He held so much wisdom in his eyes, far more than we will ever know. He looked so helpless laying there, I had so much guilt running through my body. I felt so responsible for what was happening. I carried him in my body for 9 months, I must have done something to cause this all to happen. I wanted to lay on that bed for him, I wanted to go through surgery instead of him, I wanted to grab him and run away as fast as I could, I just wanted to wake up from the horrible nightmare. I wanted my healthy baby boy back.
Zachary did have wonderful nurses with him. They not only made him look and hopefully feel like king, but they also helped to ease our minds as much as they could. They assured me that nothing I did caused this to happen, it is just something that "happens" sometimes. This didn't make me feel much better, but at least they were trying. We talked with Gwen Fosse, one of the surgeons nurses. She was very helpful in helping us to understand what was going to happen, she told us about Families At Heart, a newsletter put out by herself and other hospital members and volunteers to support those faced with a CHD. She explained that Zachary would tend to be a little slower than most babies, physically. She also expained to us about congenital heart defects, a term we had never heard up until the Thursday before.
Monday morning came to fast. All we could do was pray, we had people all over the US praying for little Zachary. An old manage of mine said to me, "Zachary is in the best hands possible, he is in the hands of God. " This statement has brought me so much peace to this day.
Zachary was schedule to have surgery at 1:30 PM. We were counting the minutes until that time. One of Dan's sister's were staying with our other children, and his mom, another one of his sister's and his brother were at the hospital with us. My mom, dad, grandma, and aunt were all there with us as well. I wasn't much company to anyone, I just sat there with my baby in my arms, held him, kissed his little head, and cried. I held him until my arms were numb, but I just couldn't give him to anyone else, I wanted to hold him forever. Finally, the dreaded moment came, the nurses were there to take our baby. I couldn't give him up, I couldn't, I just kept saying, "One more minute please, one more minute." Finally, they couldnt' give me anymore minutes, and they had to TAKE Zachary from my arms. I couldn't give him to them, my arms would not move upwards to hand them MY baby, I didn't want them to take my baby. Inside, I was screaming, "NO, YOU GET AWAY, DON'T TOUCH MY BABY." I have never in my life wanted to run so fast, I just wanted to get out of there with Zachary. I wanted to go far away where everything would be all better. BUT, the I knew that the only way for things to be all better, was to let Zachary go with the nurses to surgery. Dan stayed with Zachary until they brought him into the surgery room. I couldn't, I didn't want to see a machine breathing for my baby, I didn't want to see what he was going through, I couldn't. The surgery lasted about 4 hours. Everything went wonderful. He was still out when we seen him for the first time. He was on a ventilator, that was doing around 40% of his breathing for him at the time, but he was soon off the vent., and breathing on his own, with only a small amount of oxygen. I could not begin to discribe the feeling of relief that we had knowing that our baby was now 50% better. He was still breathing very fast, but now he was only around 60-70 breaths a minute. Zachary stayed in the hospital for a week after surgery, and was released on July 5th, 1999. Zachary was put on 3 different types of medicine, digoxin to slow his heart rate and make it more productive, Lasix to get rid of extra fluid in his body, and captropril to open the capilaries going to the lungs to make breathing easier.
It was so wonderful to be back home, our whole family was together again, life could not have been any more perfect. Alexis just adorded little Zachary. She was like a little mommy to him. She treated him like a king, she loved/loves that little guy so much. She would just hold him in her arms, just like me, and kiss that soft little head of his. Nicholas couldn't wait for Zachary to get bigger. He was so excited to "teach" him how to play with cars and trucks. Nicholas and Alexis would often argue who's turn it was to hold Zachary. They both were so proud of their little brother, and would tell everyone about Zachary's "owyee heart."
Zachary in my eyes was the perfect baby. I know, I am his mom, I am supposed to say that. But it was more than just a "mom thing." Total strangers would come up to us in the store and comment to us about him. He never fussed, even with everything he went through, and all the discomfort that he was in, he never fussed about it. He would sit/lay there, and look around as if to be taking in everything. He loved everything and everyone, except when mommy would leave. He was a mama's boy, and didn't like it to much when mommy wasn't around even if only for a minute. He loved to swing in his swing, I am convinced that little Zachary saw angels all around him. He would look up to the corner of the room and just stare. He would "talk" to the corner of the ceiling. I believe with all my heart that Zachary knew his time was to be short, and he wanted to make the best out of the time he had. Zachary was a loan from heaven, an angel sent by God to show us, and all who knew him just how beautiful like can be. Our summer together, our only summer together, was perfect in everyway. Zachary grew to LOVE Tigger. I had this little bouncy Tigger doll, and Zachary pretty much took it over. He would lay there and laugh everytime Tigger would start bouncing up and down. Zachary also started rolling over. Something that the Dr.'s said he probably wouldn't do until after his surgery.
On Oct.15, 1999, Zachary was scheduled to have a heart catheterization to further evaluate his condition, to see when the next surgery would be done. Dr. Schneider had found from a prevous EKG that was done that the coarct. had started to close slightly again. So during the heart catheterization, they were going to open up the aorta again using a small balloon. Zachary did wonderful during the test. He did have to spend the night in the hospital for observation, but everything turned out great. I couldn't believe how much improved Zachary seemed to be after having this done. He was eating without much of a fight now, and doing beautifully.
Soon after this, Zachary developed a serious cold. A normal everyday cold for most people, but since Zachary heart condition was so severe, this cold was critical for him. He was admited to the hospital for a week. It was at this point that we really realised just how fragile Zachary really was. Zachary had been on high calorie formula with a dietary supplement called poloycose from the time we found out about his defect. Now, the doctors wanted to increases his calories even more by adding cereal to his formula, and kero syrup.
Zachary was scheduled to have his open heart surgery on November 30, just a short 2 weeks after we were released from the hospital. We were so scared and so nervous about this surgery. They would have to stop his heart with this one, and I was just not comfortable with this, but it was something that had to be done. We were so nervous, but we were also excited. This would make him all better, this surgery, would be the end of surgeries.... If all went well.
Zachary was at his strongest point ever, and he was in perfect shape to go into surgery. We had to have Zachary at the hospital the day before surgery so that he could be admitted. They put him under almost right after we got to the room, they had to put his central line in. He was only out for about 2 hours. We left to get some lunch while they were doing that. When we got back, he looked like a different baby. He was hooked up to all of these machines, again, with an I.V in both arms and legs, and then he had his arms and legs taped to a board so that he wouldn't pull out any I.V's. He was still s small, I wanted to grab him and run, again, I couldn't bear to have him go through it all... again. I wanted to do it for him, he was only a small baby, at 5 months, and 28 days old, he weighted only 11lbs, 7 ounces. It was so hard to see him that way, again. Zachary was so miserable the day before the surgery, he was fussy and that wasn't like him, but who could blame him in this situation. His heart rate had started to increase again since we had to take him off all medicines two days before the surgery, at one point, his heart rate was up over 200, that was when he got very upset. We went to sleep that night and only slept about 2 hours, Zachary on the other hand slept all night long, I thought that was so wonderful, he needed his strength. Once again, I prayed that God would be with my baby. Praying was all we could do. I have never talked to God as much as I did in those 5 months. God is good, and He did answer all of my prayers, in His own way. Which is so hard to understand at times. I know that God was with my baby the day of his surgery, I know that this prayer was answered. When we brought Zachary down for surgery the next morning, he did nothing but smile. From the time he woke up he smiled at the nurses, the doctors, all of our family that was there, at Dan and I , and he smiled at what seemed to be nothing at all. I will never forget those smiles that day, it wasn't his normal sly, I know a secret grin, it was a smile, a big beautiful 'I'm going home' happy smile. I know that he knew what was going to happen. This was the last time that we seen Zachary's precious smiles. Things in the beginning of the surgery went well, but they just started goin down. The 6 hour surgery turned into 9 and a half hours. We were told that his blood pressure was extremelly low. Then I got a call from the cardiologist and he said that things were looking better, he was optimistic Zachary was going to be just fine, "He is a little fighter, he is not out of the woods yet, but he is a fighter, " that is what he said. About one hour after that phone call the surgeon and his nurse, Lisa Barr walked in the room, both looking down at the floor when they walked in. The surgeon said something, I am not sure what he said, I guess I chose to block it out. Then Lisa repeated it, "The baby died." God was with him that day, Zachary fought to hold on, for us, but finally, God said that was enough suffering for Zachary, and He called him home, to a place where Zachary will suffer no longer. God was with him, and so were all Zachary's little angel friends, but Zachary knew that they were not there so he wouldnt' be alone, they were there.... to guide him home, and he was happy, so I can't help but TRY to be happy for him. I will forever miss and love Zachary, but I have to try and be happy for him. I still cry when I talk about it, I probably always will, at night when I go to sleep, I pray that I will wake up and it will have all been a horrible dream. I miss holding my angel in my arms, the one that God so generously gave me to hold and love. I miss waking up at 6 AM and the first thing I seen was his angelic smile, there is so mcuh that I will miss, and so much that I will never understand. But we did what we could here on earth, Zachary had the best care possible, and the most love he could have had, but it wasn't God's will. I will never understand why it had to happen to Zachary, but one thing that I do know is that he is happy. I know this because of those smiles I seen that day when our Lord came to bring Zachary home. WE went in to hold him one last time, I wasn't sure if I wanted to do this at first, but I am so happy that I did now. He looked so beautiful and so peaceful. I could feel the presents of our Lord there with us as well. I knew that Zachary was and always will be safe in the arms of Jesus. Until the day that we meet again, and I am able to hold my baby once more, only this time, for eturnity, he will be safe in the arms of Jesus. Zachary was our earth angel, and now, he is our little guardian angel. Watching over us, in a world free of pain, and place where no one will suffer, a place where there is nothing but love, he is watching over us from heaven above, and he will be there to guide us home when our Lord calls us home .