Tristan

Mom to Gabriel

October 8, 2009 – November 5, 2009

Rockford, Michigan

I woke up early on the morning of February 27, 2009. It was my husband and my first anniversary, and for some reason, although we were not actively trying to become pregnant, I felt compelled to take a pregnancy test even though I wasn’t late yet. I sat there waiting, and honestly terrified. I was 20 years old, and my husband was 19. He had just lost his job, and it was nearly impossible to find work in our area. I pondered what would happen if I was pregnant, and how we could support a child. Finally, I couldn’t take the suspense anymore. I looked and saw two lines. Two. I felt like screaming with happiness, but I just walked into our bedroom where my husband was still sleeping. I woke him up, and told him I had found something important, and handed him the test. He didn’t trust the test, so we went to the local grocery store, and bought a digital test. Almost immediately “pregnant” popped up. We couldn’t have been happier.

I had a fairly uneventful first trimester. I did become sick, and ran a high fever around ten weeks. Both my general practitioner and OB told me not to worry, the baby would be fine. I accepted what they told me, and went about with my normal routine. My belly began to stretch, and I loved being pregnant. I dreamed about my child every night, and couldn’t stop talking about how excited I was to meet my little one. The baby’s heartbeat had been strong, and I had no cause for concern.

When I was 18 weeks, I began spotting while at work. It was bright red, and I remember running out of the bathroom and sobbing in the break-room. I was terrified I was losing my baby. I couldn’t get a hold of my husband for nearly an hour because he was at a birthday party for a friend’s son. My friends comforted me until he finally arrived and took me to the hospital.

Once we were there we got settled in a room almost immediately. We waited for quite some time for a doctor, but once he arrived he got right down to business. During my exam, there was no source found for the blood, and he asked if maybe I was confused. I assured him that I had indeed found blood in my underwear, and he decided to do an ultrasound. He was stern and silent the entire time. He had the screen on the old machine pointed away from us, and called several other doctors in and pointed at it. Once the other doctors left, he turned the screen toward me, and I could see my baby dancing around and waving at us. He said everything looked good, but since the machine was so old, he thought it might be best that we go downstairs and have an ultrasound tech do an ultrasound, because they would be able to confirm that everything was fine.

During the ultrasound I joked with the tech about it being ok if she slipped me a piece of paper with the baby’s gender on it. She was nice, but after a while, she had stopped joking, and looked concerned. She quietly said that although she wasn’t supposed to say anything, there was some shadowing around the left ventricle of my baby’s heart. I was scared, but she assured me that it was probably just the way the baby was positioned, but I needed to follow up with my OB. I accepted that everything was fine and called my OB the next morning. They referred me to a maternal fetal medicine practice, and I set up an appointment four weeks away.

When we arrived at the appointment I was scared, but excited that I would finally get to learn the gender of my baby. After a few moments in the waiting room, a woman who couldn’t have been much further along than I was wheeled through the waiting room, clutching her belly and sobbing. She was wheeled across the pedestrian bridge into the hospital, and at that point, it really hit me that something could be horribly wrong with my child. By the time they called me back I felt like I was going to become physically ill. I held my husband’s hand so tightly I thought I might crush his fingers. I lie down on the table, and the tech began the ultrasound. She was chatty, and very nice. We talked about our hopes and dreams for the little one, and how we didn’t care what gender the baby was, as long as it was healthy. At that point she went to work trying to find out the baby’s gender, which she found quickly – we were having a little boy! I was so excited, and my head filled with little blue outfits, cars and hopes that my son would look like my husband. After a few moments the ultrasound was done, and she stood up. “I need to go get the doctor to come take a look,” she said. Something about her had changed, just like with the tech at the hospital. “Is everything ok with him?” I asked. She dropped her eyes to floor “No,” and with that she walked out of the room.

The doctor that came through the door next was cold and distant. She told us our son was going to die, that there was no hope. She yelled at me for sobbing, and told me that we were holding up the room for other patients that needed it. I was forced to walk through the hallways of the office, still sobbing, in front of all the other people there. They sat us in a room full of pamphlets, and we were there for what felt like hours. The doctor came back in, and started telling us that our best option was to end the pregnancy, and to just try again. I tuned her out, and after a while we left. When we got back to our apartment I got into bed, and stayed there for two days, until I had to return to work.

I returned every two weeks, then once a week, then twice a week. My belly continued to stretch, and our little boy was growing bigger and stronger. His heart rate was always great, and he always looked perfect on the ultrasound screen. They switched his diagnosis various times, until they finally said there was no name for what he had, it was a form of cardiomyopathy they had never seen. I was told my body could realize how sick he was and that I could go into labor at anytime, so I just waited. I waited for him to come while I was at work, and in the middle of the night instead of sleeping. I was given steroid shots to help his lungs develop and then I waited some more.

After going out to dinner on October 7th, we returned home, and something didn’t feel right. I was queasy, so I went to bathroom. Once I got in there I decided I might as well use the bathroom, otherwise I’d just be back in there in a few minutes. I looked in the toilet, and there was blood. I called my OB, who told me to come straight to the hospital. I was 35 weeks, so my son’s chances were very good, considering he had gotten the steroids for his lungs. On the way there I realized that everything was out of my hands after this, and I prayed that God had made my son a fighter. We arrived at around 11:30 pm, and were admitted and put in a labor and delivery room. I knew this was it.

I honestly don’t remember much of my labor. At some point they told me I needed to calm down, and I was given something to help. I drifted off and had bizarre dreams, and when I awoke they told me it was time to push. There were probably 30 doctors and nurses in the room with me, which for some reason I thought was normal. I pushed for twenty minutes, and he was here! I looked down, and saw his face for just a moment. He was gorgeous, and looked just like his father. He weighed 7lbs 3ozs.They did an echocardiogram in my room, then wrapped him up and gave him to me. They told me the team from the NICU was coming to get him, and to cherish these few moments. I held him, kissed him, and cried. I let my husband hold him, and he cried. My parents were given a quick chance to hold him too. My dad tried to give him to me, and I was too distraught to take him, and refused. I regret this decision, and will for the rest of my life. I wish I would have known that this was the only chance I would have to hold him while he was alive. They put him in an incubator and whisked him away from me.

He spent 5 days total in the hospital near our hometown, and they were awful. The cardiologist was rude, and said that we shouldn’t medicate him, that he was suffering, that we were making it worse. I spent all my time in the NICU with him, and I knew in my heart that he wasn’t ready to give up yet. After days of pressing we got him transferred to Children’s Hospital of Michigan located in Detroit. He was loaded into an ambulance, and we followed.

When we arrived in Detroit, they had no details about my son’s transfer, and he could not be located within the hospital. I was so scared that something had happened on the way. It took them nearly an hour, but when we finally got to see him he was settled in his room in the PICU, sleeping peacefully. We spent about an hour with him before the hospital social worker encouraged us to get registered at Ronald McDonald House, just in case they might get full for the night. The transplant team caught us on the way out, and told us to be back bright and early for his exam and to talk about the details of what lie ahead. They were nice, and I was so happy to be out of the first hospital. Things were looking up for Gabe for the first time in his life, and I was able to sleep for the first time since he was born.

The next day when we met with the transplant doctors we were told that contrary to what our doctors at the other hospital had said, Gabe was a perfect candidate for a heart transplant. We signed the paperwork, and were given a beeper. Then we played the waiting game. Everything is a blur after this, so bare with me if things seem strange or possible out of order.

Over the next week, Gabe got worse. While we ran to the store we received a call that his breathing became too labored, and he had to be intubated, and we rushed back. I was scared to go anywhere after that. Later in the week he had to be put on ECMO, which is basically a giant machine that acted as his heart. Blood was pumped out one vein in his neck, cleaned and oxygenated, then pumped back into another vein. We were told this could either save his life, make him septic, or cause a brain bleed, but without it, he would most certainly die then and there. Without a viable heart of a baby close in size, we had no choice. A few days later Gabe started to show signs of an infection in his blood, and he had to be removed from ECMO, and fast. He was removed from the transplant list as he was no longer healthy enough to go through the process. We decided to opt for an experimental treatment, called the Berlin Heart, otherwise known as a Left Ventricular Assist Device (LVAD). We had to sign papers from the FDA, and wait for them to approve the only choice we had left for our son. After they approved we had to wait for it to arrive, and then a free day for the surgery, which ended up being November 1, 2009. They told us that if the surgery went well he would be off the ventilator and in our arms soon. I couldn’t wait.

We got to the hospital at 4:00am and kissed our little boy, and told him he was going to beat all this. They wheeled him off, telling us we would be able to see him probably in 4 or 5 hours, as they had to attach the LVAD, and close 4 holes in his heart. It was 8 hours until we finally got word of what was happening. The surgeon had gotten the holes closed right off the bat, but instead of finding a tough muscle like he had expected his heart to be, he found it had the texture of tissue paper. This made attaching the tubes almost impossible. Along with that, while on ECMO Gabe’s right ventricle had become useless, so he now needed and LVAD on both sides of his heart, which had never been done on a 23-day old baby before. They assured us Gabe was in capable hands, and disappeared for another 8 hours. When they came back they told us everything had gone according to the newest plan, and we would be able to see him. I couldn’t believe the boy I saw was my son. He was puffy, red, and all of his little fingers and toes had plumed up and looked like sausages that were about to burst from their casings. I kissed him and told him and told him how brave he was, and he was wheeled back up to his room with two artificial hearts powering his tiny swollen body.

Things began to look better for Gabe. The infection was gone, and he was losing the excess fluids at a great rate. We decided since he was doing so well, a quick trip to visit friends would be ok, as long as we were not gone long. We were gone for a total of seven hours, and as soon as we walked into Ronald McDonald house I received the call. The nurse on the other end was very somber, “Mrs. Augustine? We need you and your husband to come up to the hospital as soon as possible. Things are not going well.” My husband was parking the car in the hospital’s parking ramp, and I remember running through the dark screaming on the phone to him. It was snowing and raining at the same time. I had to use the hospital’s night entry, which was the service entrance, and I was forced to make small talk with a security guard in the slowest elevator I’ve ever been in. Once I got to Gabe’s floor I was at a dead sprint to get to his room, and what I saw shocked me. The nearly normal looking child I had left was swollen even more than I had ever seen before. He had not been urinating, and was almost orange in color. My husband arrived, and we sat by Gabe’s side. He was awake for the first time since he had been intubated three weeks before, and he just stared at me. I asked if they had allowed him to come out of sedation, and they said they had been trying to keep him under to no avail. I spent the next 5 hours staring into my little boy’s perfect blue eyes. My husband and I would switch sides every few minutes just so he knew we were both there with him. After pumping him full of diuretics, he began to pass urine, and the nurse suggested we go get some rest, promising that even if the slightest thing changed she would call. We got back to Ronald McDonald house, and I fell asleep almost immediately.

I woke up early the morning of November 5th, and just knew something wasn’t right. I woke my husband up, and we quickly dressed and went to the hospital. As we walked in, they were wheeling the little girl that shared Gabe’s room out, and I just assumed that she had a surgery or test of some sort. We were greeted by the transplant team we had grown close to, the heart surgeon, and various other doctors. Gabe had stopped breathing in the middle of the night, and they had to place him on a high speed ventilator just to keep his lungs stimulated enough. He was even more swollen, and in that moment I knew. They drew the curtains past the glass sliding doors, and told us that our poor baby boy was struggling to stay alive even with the life support he was on. They asked what we wanted to do, and I asked if he was suffering. They said that they believed he was. Without even looking at my husband we both said it was time. I broke down, and my husband had to hold me up so I didn’t land on the floor. We sat by his side and cried together, telling our sweet baby how much we loved him, and what a good fight he put up. We told him about our family members he would meet in Heaven, and we had him baptized by the hospital’s Chaplin. I was too upset to take any photos of his baptism, and now, I really wish I had. I stepped out into the hall to use the phone to call my parents, and could barely whisper, “We’re letting him go…” My dad is hard of hearing, and asked me what I said, and I began screaming irrationally at him. One nurse took the phone from me and gave me a bear hug to try to calm me down, and another gave the phone to my husband, who had to calmly explain everything.

When we came back, Gabe’s nurse had him wrapped in a blue blanket with yellow rubber ducks on it, and asked if we wanted anyone to stay with us. We asked one of the girls from the transplant team who we had grown close with to stay, and a few Gabe’s nurses who had grown close to our little boy. They laid him in my husband’s arms, and began to take him off the ventilator, and unhook the tubes connected to his two Berlin hearts. They handed him to me, and I heard the laptop that controlled the settings on his Berlin hearts clink. He was so much heavier than when I held him the first time, and prayed that I was dreaming, that someone would wake me up and I would still be pregnant. A doctor walked over, and put his stethoscope against Gabe’s chest. He looked into my eyes, and simply said, “His heart’s not beating anymore. Take as long as you need,” and excused himself with everyone else. We held him for another hour, and then decided it was time to let him go.

To this day, we don’t know what caused Gabe’s heart defects. The doctors in Detroit guessed that whatever I had early on in pregnancy was a virus, and had attacked Gabe’s heart while it was in the process of forming.

My dad came to pick us up the next day. I refused to go into our house once we got home. I didn’t want to see Gabe’s things, or even think about him. My husband and his friend packed everything up, and we closed the door to his room, and I didn’t go in until we moved out two months later. I tried to kill myself, but my husband managed to break the door down to our bathroom before I could do any serious damage. I went through counseling, but I still struggle with depression, I still cry about my baby almost every day. My counselor suggested maybe another child would help me to cope, and I became pregnant again in February 2010, and delivered a healthy baby boy named Gideon on November 8, 2010. I credit my son with saving my life, and I never take a moment with him for granted.

Even though I only have one son with me here on earth, I will always have two smart, strong willed, and handsome sons, it’s just that one happens to be the others guardian angel.

You can contact Tristan at tristan.augustine@gmail.com.

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Comments

  1. Hannah says:

    I’m so sorry for your loss. Your story is so sad.

  2. Megan O'Malley says:

    I’m sorry for your loss. Your story sounds very similar to mine. The only real difference is that we didn’t know about my daughter’s congenital heart defect until she was born. I am due in April with a little boy and I’m hoping her little brother will finally be able to bring some peace to our family.

  3. Emma says:

    Hi hun i am so sorry u had to go threw all that. I can relate so much 2 ur story as my son was also born with heart problems. my son Aaron had TAPVD which wasnt diagnosed until after he died. My little boy was really weak wen he was born and was only with us for 25hrs but everything that you went through is exactly the same as what me and my partner went through just in a shorter space of time. Im sitting here crying while i write this because there is just so many similarities with ur story and ours and i dont like 2 think that someone had 2 deal with the same pain as we did. my heart goes out 2 you and your family and im sure u will live the rest of your life making your little man very proud. lots of love and big hugs 2 u hun and floaty kisses 2 Gabe ur angel in the sky xxxxxxxxxxxxxxxxxx

  4. joanne says:

    I am so very sorry you lost your precious little boy,life is so cruel, i too had a little boy called jakey who was born with a very rare genetic disorder and was told he would die,my jakey fought for 5 & a half months and passed away in my arms on the 16th september 1992,i still cry every single day for my little boy who i miss terribly,i too have another son called sammy and he saved my life just like your son did for you,the pain never goes away,sending you and your family love and prayers joanne xxx jake jordan george fletcher 30/3/1992 to 16/9/1992 xxxx

  5. Katy says:

    I am sorry for your loss Tristan. I am so glad your husband broke down the bathroom door and that you had an opportunity to experience the joy of another baby. I hope that you continue to heal and find happiness.

  6. Savana Williams says:

    Our stories differ but our very similar, I felt you pain in every word. You should find me on facebook. My name is Savana Williams <3 Heart hugs<3

  7. Vicky says:

    I’m so sorry, I cried while reading your story, it took me back to losing my own son. removing life support is so difficult and yet it shows such strength and how great a parent you truly are. And I had to read the last paragraph a few times – Gideon was my boy’s name, he went to heaven last year. I don’t come across many Gideon’s :) xx

  8. Kellie M says:

    Tristan,
    What a heartbreaking story. So sorry for your loss. Thank you for sharing your story. <3

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