Me, Brandon and our oldest son camping in San Diego when I was six months pregnant.
My name is Tricia. My husband’s name is Brandon. We met two years ago and knew we were meant to be together. A little over a year ago we knew that we would be married, and desperately wanted to have a child together. He already had a daughter from a previous relationship. I had two children from previous relationships. But our love – the deep connection we felt from the start – was a new experience for both of us. Neither of us had been married before. Neither of us had actually planned a child before. So both of those were firsts for the two of us. We were excited about our future together.
We planned to be married in the Spring of 2009. We figured it would take awhile to get pregnant because of my age (I was 40 at the time). But…SURPRISE! I got pregnant the first month we tried. We upped our wedding date to February 2009, when I was 16 weeks pregnant. We found out just before our wedding that we were having a boy! We soon settled into marriage and pregnancy. We spent the spring planning for our baby’s arrival, picking out nursery decorations, buying adorable little clothes. It was so exciting! We had this precious baby growing, moving, kicking inside me…we talked about our dreams for him, our hopes for the future. We pondered who he would look like. I hoped he’d have Brandon’s beautiful mouth and adorable ears. He wanted him to have my blue eyes.
Our gorgeous little boy, Ian Thomas, was born on July 9th, 2009. He was four weeks early. He weighed 6 lbs 12 oz and was 19 inches long. We were both surprised at how small he was. But, oh, was he beautiful! A head full of dark hair, and bright blue eyes! He spent the first 24 hours in NICU because he had fluid in his lungs due to being born c-section. I had not had a c-section before, and it ended up being totally unnecessary. The doctor was sure the baby was huge (my last child was very large). He was wrong. In retrospect, I think the doctor just wanted to schedule the birth for his own convenience.
During my pregnancy, Brandon and I discussed sterilization. We were sure we didn’t want any more children because of my age. We thought we were being responsible. I was hesitant and told the doctor that if I had a c-section I suppose we could do it then. If not, I’d wait a few months. So, because of the c-section I had my tubes tied the day our sweet baby was born. I almost instantly regretted it…I cried about it the next day. I’m not sure if it was a premonition or hormones responsible for my reaction. But, either way, I have ended up having good reason to regret the decision.
Back to our sweet boy…we went home together three days after he was born. He was perfect! He was a content baby and rarely cried. He nursed well…and oh, how I loved nursing him. I didn’t even mind getting up in the middle of the night because I loved holding him close. As the weeks went by, Ian’s personality began to emerge. He was quiet and content…sat in his swing and just watched everything going on around him. When he was hungry, he didn’t cry…he grunted at us. If we didn’t respond quickly enough, his grunting got more insistent. It was adorable. His happy disposition and sweet little spirit won over everyone who met him. Both sets of grandparents, and his older sisters and brother fell madly, deeply, crazy in love with him. Brandon and I were so happy and spent as much time with Ian as possible. We talked about his future often…Brandon is a baseball fanatic and was sure Ian would be a great pitcher. I was already planning the purchase of his first dirt bike. Either way we were positive that our beautiful boy was going to set the world on fire!
On September 3rd, 2009 I woke up and saw that Ian had thrown up early that morning. Thinking he was sick, I cleaned up and held him. He threw up one more time that morning. I called the doctor, who said to feed him again and bring him in if he didn’t keep it down. He kept it down, but acted like he didn’t feel well all day. I thought he had the flu. As the day turned into evening, Ian began getting progressively more lethargic. He began to have a funny look in his eyes…like he wasn’t quite there. As Brandon and I discussed whether or not to take him to the doctor, I began rubbing his sweet little head – as I often did. It was then that I noticed that his fontanelle (soft spot) was firm. I don’t know if it was instinct or what…but Brandon and I looked at each other and immediately knew we needed to go to urgent care. That’s where our nightmare began.
The doctor at urgent care didn’t seem alarmed at first. But when I pointed out the firmness on his head, he recommended we take the baby to the hospital. I’m not sure when it became urgent, but the next thing I knew, there was an ambulance there. I remember hearing something about an “altered state of consciousness.” I rode in the ambulance, but I wasn’t allowed to ride in the back with Ian. A block away from urgent care, I heard Ian crying and someone told the driver to use the lights and siren. I was scared to death. I could hear my baby crying and I couldn’t do anything about it. But by the time we got to the hospital, he had stopped crying and was sleeping soundly in his car seat. Once at the hospital, Ian woke up again. He started crying again, and I remember one of the paramedics trying to reassure me, saying that “crying is a good thing.” All I wanted to do was pick him up and hold him and soothe him. The doctor said Ian’s breathing was a little irregular, and they intubated him. It still hadn’t dawned on me that there was more wrong than some illness that they could fix. I still thought we would be going home that night. I was wrong. So wrong. They did a CT Scan. The doctor came out of the room and told us that the image showed a large mass on Ian’s brain. They didn’t know what it was – whether it was fluid or a tumor or what. But they were going to admit Ian, give him a room in Pediatric ICU and do an MRI. I think I screamed – I’m not sure. I know I started crying hysterically. My knees went weak and Brandon had to hold me up. Up until that point, I had never been so scared in my life. As we waited in the Pediatric ER, I sat next to Ian’s bed talking to him and telling him how much I love him and stroking his beautiful little face.
Ian was put into a room by about 3 a.m. His vital signs were good and he was medicated and sleeping. The nurses were wonderful. He was hooked up to machines, but they moved things around and I was allowed to hold him. He was wrapped in a blanket and, other than the tube coming out of his mouth, he just looked like he was sleeping. I was still hopeful everything would be okay and that the doctors would find a way to heal my baby. I sat there holding him and talking to him, telling him how much we love him. How much he was wanted and planned for and loved. I told him that Mommy and Daddy were there, and we’d never leave his side.
The MRI was done that morning. It showed that our baby’s brain had been overtaken by a tumor. The mass on the screen took up about 2/3 of Ian’s brain. The doctor didn’t know if the mass was benign or malignant. He said that he didn’t believe he could remove the whole thing in one surgery, because it would take too long and he didn’t know what he’d find once he got in. He said that a baby Ian’s size could only stand about 1 ½ – 2 hours of surgery. But he told us that the surgery was very serious, and there was about a 40% chance that Ian wouldn’t make it through surgery. He went through all the possibilities. The tumor could be benign or malignant. There could be chemotherapy. There would definitely be more surgeries if he survived this one. And, if he survived the next few days and any further surgeries, the extent of the brain damage would not be known until Ian began to grow. He could be mildly disabled, or he could be a vegetable. As I sat there listening to the doctor, my whole body went numb. Shock doesn’t begin to describe what I felt. I sat there shaking in Brandon’s arms while the doctor thoroughly explained the risks, and had us sign permission forms for surgery and blood transfusions.
We were allowed to escort Ian all the way to the operating room. Brandon and I kissed our sweet baby and told him we love him. Then they wheeled him away. The next few hours were a blur. We didn’t know what the outcome would be. We prayed and prayed. There were people praying all over the country for our sweet baby. Three hours later, Ian came out of surgery. The doctor said that he was a strong baby – he was doing so well, they kept going to get as much of the tumor out as possible. He said he removed about 50-75% of it, and they sent it to pathology to determine what kind of tumor it was. Unfortunately, the tumor had already grown tentacles into Ian’s brain. Ian had to have blood transfusions – enough to replace his blood volume twice. His body was going to have a hard time adjusting to the blood. The doctor said that later that afternoon they would do another CT scan to see how things looked.
When we were allowed into Ian’s room, we were warned about what he would look like. I still wasn’t prepared. The whole right side of his head was swollen so that his little ear stuck out. His right eye was swollen. The sutures on the side of his precious little head looked angry and mean. He had tubes and wires everywhere. He looked so little lying in that bed. We sat and talked to him, stroking his legs and telling him we love him.
The afternoon went by in a blur. We hadn’t slept for almost 48 hours. That afternoon at about 5:00 p.m. Ian’s heart stopped. The doctors were able to revive him, but had to give him a medication to help his heart continue beating. A sense of dread began to wash over me. It was finally sinking in that my beautiful baby was probably not going to live. I was not prepared for what Ian would look like as the day went on. The swelling had increased so that his head was huge. His little ears stuck straight out due to the swelling. Both eyes were puffy. The only thing that looked like him was his little nose and sweet mouth. His body was swollen, too.
We met with the doctor to see the latest CT scan. The space left by the removal of the tumor was filling rapidly with blood. The blood was not coagulating, so Ian was bleeding into his stomach. The blood in his head was continuing to put pressure on Ian’s brain. Massive brain damage was almost guaranteed. Brandon and I went back to Ian’s room and spent the evening talking to him and touching him. We told him how much we love him and how precious he is. We told him how much we wanted him, and how we had planned him. We cried together. We slowly realized that our little boy was dying. He was being kept alive by a respirator and medications that kept his heart beating. Throughout the evening, we questioned every doctor that came in the room. What would you do if this was your baby? Is there even the most remote chance of a miracle? When a neurosurgeon came to talk to us at about 9:30 p.m. we got the worst news ever. The pathology report had come back. The tumor was “very fast-growing, and highly malignant.” Even as we sat there, the ugly tumor was continuing to grow in our baby’s head. Our beautiful boy had already suffered major brain damage. He would never recover.
Our angel at seven weeks old.
I felt like I had hit by a train. How could an evil, ugly monster like that be growing in our perfect baby’s head? How could something so beautiful have something so hideous inside his head? Why was this happening? We had done everything right. We fell in love, we planned this little angel, we were so happy and felt so blessed to have him. We got married. We were so excited to raise a child together – a child with a mom and a dad. A child whose parents wanted him so much. Had we done something to deserve this? Did I do something when I was pregnant that caused this? Guilt and anger and anguish. And through it all, the only thing I wanted to do was hold my baby boy and protect him and kiss him. All a mother wants to do is keep her kids from harm. But I couldn’t help him. I felt like a failure.
Brandon and I decided that night to have the machines and medications turned off the next morning. We would spend one last night with our sweet baby Ian. Our family could come say good bye. That night we each slept for just a few minutes at a time. We shared a recliner in Ian’s room. Every time I slept, I dreamt about Ian. He was smiling. He was happy. I was nursing him. And then I’d wake up to the nightmare. Could this possibly be real? Every time my milk came in during the night, I cried. It was his feeding time. But he would never nurse again. The grief was indescribable. My breasts were engorged with Ian’s nourishment. I ended up pumping the milk, then couldn’t throw it away. It was Ian’s. My body made it just for him, and I couldn’t bear the thought of throwing away anything that was his. I kept getting up and standing by his bedside, talking to him. Telling him how I love him. How I will always love him. Stroking his face and kissing whatever body part I could reach. Stroking his precious hands, rubbing his chubby little thighs. Gently caressing that adorable head and face.
Morning finally came. One by one, those that love Ian came in to tell him goodbye. Our oldest daughter, Lexie, stayed in the room for a long time. It was unbearable watching my oldest baby grieve and say goodbye to my youngest – her sweet baby brother. Our only other son cried and talked about the things he had wanted to do with Ian. He wanted to play catch with him and teach him baseball. Brandon’s father came in and said goodbye…he cried and prayed. Ian was his only grandchild that lived close – right next door. My parents came in and kissed their youngest grandchild goodbye.
At around 9:30, the doctors came in and disconnected all the tubes and wires that were keeping our sweet boy alive. He was given morphine to make sure he didn’t feel anything. He was wrapped in a blanket and handed to us. I sat in a rocking chair facing Brandon. He sat on the edge of the recliner. Together we held our baby. The little miracle that we made together – the product of our love and our hopes for the future. We put our heads together with his and whispered how much we love him. That it was okay to let go. That we would always love him and would never forget him. We kissed him and stroked him. I kept kissing his perfect little mouth, remembering how he’d smile in his sleep when I kissed his mouth. Soon, he stopped breathing. After a few minutes, his strong little heart stopped beating. I remembered that it was just eight short weeks ago that the three of us were alone in another hospital room, in a different hospital. It was just the three of us when Ian came into the world. And it was just the three of us together again when our hearts were shattered and our sweet angel left us.
We sat with Ian for a few minutes after that. I looked at my sweet, precious baby for the last time. We went into the waiting room to let our families know that Ian had passed. I felt a pain so intense I thought I would die. I wanted to die. As we were leaving the waiting room, a nurse came out and gave me the blankets Ian was wrapped in when he passed. I was overwhelmed with grief. My knees buckled. I’ve never cried so hard or felt so much pain.
Our little slugger at his first Angels game.
That was six weeks ago. Since that time I have felt every emotion, every pain, every desperate thought a mother could feel. Brandon and I and our children are mourning our little Ian the only way we know how…crying together, talking about him, writing about him. No one writes a manual on how to grieve for your child. I have kept a journal, writing in it every day for the past six weeks. When I’m ready to share it, perhaps I will post it in this blog. I have discovered things about myself that I never knew. I have a strength I didn’t know I had…and I have a dark side I didn’t know was there.
After hours of discussion and soul-searching and gut-wrenching questions Brandon and I have come to the conclusion that the only way we will ever feel almost whole again – like we are a complete family – is to have another child. We have discussed this with our grief counselor and our children…and we all believe that having another baby is the right decision. Our dream is to have a child together. We are wonderful, loving parents…our older children are happy, healthy, loving kids. None of us desire to attempt to “replace” Ian. That couldn’t happen. He was perfect and beautiful and is absolutely irreplacable. He has a part of our hearts that will never be touched by anyone else. But we have so much love to give another child…and sharing that love – sharing it with Ian’s little brother or sister – is something that we believe will help our families heal. Which takes us back to that fateful decision to have my tubes tied.
I have done a lot of research, both on the internet and through discussions with doctors. I believe the right course of action for me is to have a tubal reversal surgery. Obviously, insurance does not pay for this procedure. Brandon and I are scrimping and saving to pay for the surgery…but time is of the essence. Because of my age, my fertility is rapidly declining. We only have a small window during which we will be able to have the surgery and, hopefully, get pregnant. Brandon and I have started a savings account just for this purpose, and are hoping to have enough money for the surgery by February 2010 – our first anniversary. The cost of the surgery is about $6000. We have about $800 saved so far.
I hope that I have touched someone with our story. As we head down this road, I plan to blog about the experience and share it with anyone who is interested or who has helped us along that path. Thank you from the bottom of my heart for taking the time to read our story. If you are a parent, please hug your children extra-tight every time you leave them. And remember how quickly life can change…never take any of your blessings for granted. Ian’s legacy to us will be just that…we realize how precious life is, how beautiful love is, and we all have a deeper appreciate for life and happiness than we ever thought possible.
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My Journey to Getting Untied 