One year ago today, we buried our son. When Calvin passed away November 16, 2008, I went into shock. After we held our son in the ICU and he took his last breath in my arms, we returned to my hospital room upstairs. I developed a severe headache. I threw up and started shaking uncontrollably. During the hours following our son's death, I developed a medical emergency. My bladder stopped working. I was still making urine but I was unable to release. By the time the doctor decided to take action and give me a Foley catheter, I had retained almost a litre of urine and my bladder was in danger of bursting. Once the catheter was inserted, the bag filled immediately and had to be dumped, I was crying and numb and in shock. I spiked a fever and was told that I would not be released from hospital until my bladder was working properly again. The goal was to keep the Foley in for twenty-four hours and then remove it to see if I could pee on my own. When it was removed, I was still unable to urinate and was retaining almost 800ml by the time it was reinserted. The doctors were puzzled. They told me sometimes the bladder undergoes trama during a c-section and becomes paralyzed but this was seven days later. I had also experienced a worsening of my pelvic pain and was requiring more medication to keep the pain under control. This too was puzzling the doctors. They told me I should no longer be requiring narcotic pain relief. At that point, I just wanted to be discharged.
From my hospital bed, I called my friend Carrie who was working at a funeral home here in my home town. We arranged for her boss to make the five hour drive down to Vancouver to pick up Calvin's body and bring it home for us. We would make the funeral arrangements when we moved home. Finally, three days after Calvin's death, I was discharged with strict orders to check in with MFM the following day. My doctor was afraid of letting me travel if I continued to have trouble with my bladder but I assured him that things would be fine and that I needed to go home to bury my son. Shane's mom and dad and his sister Susan were at the house in Vancouver helping us pack and looking after Lorelei. The goal was to be packed up and ready to leave Saturday morning, one week after Calvin had died. I think being around Shane and I in our grief was too much for his parents to handle, so after loading Shane's truck with some of our belongings, they set out for home on Friday, leaving Shane and I to finish packing up for the trip home Saturday.
I remember feeling detached on the drive home, wishing that we had chosen to bring Calvin's body back ourselves. Shane couldn't do it. I had suggested that I could hold Calvin for the drive back but he just couldn't bring himself to have our dead son in the van with us for the entire drive back, even though the hospital social worker had told us that several families chose to do it that way. As we pulled into our driveway upon returning home, everything felt hollow. I didn't want to be there without Calvin. I hated that we were coming home without our son.
The next week we met with the funeral home and made Calvin's arrangements. We had numerous family members who wished to come to the service from out of province so we chose to have the funeral on the Saturday of that week, thirteen days following Calvin's death. Truthfully, I don't remember much of the service. I was in extreme emotional pain and was suffering physically. During a follow up doctors appointment when we returned home, it was discovered that I was suffering from a massive e.coli infection in my uterus and bladder. I had probably taken four or five percocet the morning of the funeral. I was terrified that I would start howling great sobs during the service and that I would be unable to control myself. I don't even remember who came. All I do remember is that the chapel was full of our friends, and Shane's family. My family never came. It hurts me to this day that not one member of my family bothered to come.
Calvin's service was beautifully performed by a retired minister who is also a twin. Shane carried our son's casket out to the car to be transported to the cemetery and then carried Calvin from the car to his tiny grave. It broke my heart to watch my husband carrying our boy's casket, knowing that this would be our last good-bye. After a small graveside prayer, we returned to the funeral home. I couldn't bear to watch my son's body be lowered into the ground so we asked the minister to stay with Calvin until he was buried and we went back for refreshments.
That night I developed severe anxiety that Calvin hadn't been buried, that the minister had left him there on top of the ground. I was worried about animals or people defiling my son's body and couldn't sleep until I made Shane go back to the cemetery to make sure Calvin's body had indeed been buried. It gave me nightmares for weeks. Even though Shane assured me that everything was fine, I was still horribly worried that something would happen to him, that worry reinforced everytime I heard the coyotes howling in the night.
Today when I think of that day, I feel sad. I feel sad for all that we went through at that time, all that we've been through since. It's such a lonely, empty feeling to attend the funeral of your own child. It's something I hope to never have to do again God willing. It's something no parent should have to do. Today I remember my son one year after that sad day without the anguish, only a quiet whisper of sadness at the memories.
I have been much more at peace lately than I have ever been since Calvin died. I'm not quite sure why, but perhaps it's because that dreaded one year angelversary has come and gone. In the first months after losing our son, time was very important. I counted the days, weeks, months without our boy. I couldn't get over that x amount of time had passed and that I was still living. Guilt ate at me constantly. As Calvin's year approached, I became extremely agitated. Not only was I dreading Georgia's birthday with the cake dilemma, but I felt an overwhelming sense that I was moving further and further away from my son. It made me angry and incredibly sad. How in the world do you justify your life carrying on when your child's life does not? Some would call it survivor's guilt I suppose, that sick feeling in the pit of your stomach that accompanies the question "Why him and not me?". I don't think there is one more thing that I could have felt guilty about when it comes to Calvin's life and death, I'm pretty sure that I felt guilty over every possible thing that could have happened to either cause his heart defect, cause the trauma he suffered during surgery, cause the overdose that I'm sure contributed in some way to his fragile state, or to cause the bleed in his brain because of ECMO. The guilt has not given me any sense of peace or any answer why, nor has it changed the situation. Although I have wished a thousand times that I could go back and do this or that differently, I can't. Calvin's death cannot be undone no matter how much bargaining I do with God, no matter how much baggage I carry on my self-imposed guilt trip. I think I am just beginning to realise this. And oddly, I have felt more at peace in this past couple of weeks than I have all year.
Another thing I have noticed as of late is that I am turning off the sappy music, changing the channel from sad shows that used to leave me paralyzed in tears as I watched someone else's tragedy unfold. I WANT to feel better. And I don't feel bad about wanting to either. I'm actually kind of surprised that I am okay with this. In the beginning, I desperately searched out anything that held meaning. Books, music, blogs, movies, anything I could relate to my pain. I was seeking some form of enlightenment that would give me answers, put my fears to rest and reassure me that I would see my son again in Heaven. The more I searched, the more focused I became on Calvin's loss and the pain became insurmountable. I doubted I would ever enjoy my life again. I expected to feel empty forever.
As of late, there has been a subtle shift in my feelings, a hint of light shining through. I'm not sure why, perhaps it has come merely through the passing of time, the softening of loss. Maybe it's because I have acknowledged that I am tired of feeling sad all the time and realize that only I can find the joy within again. Maybe it's the Christmas spirit that has filled my heart with hope for my life and my family. I'd like to think it's a gift from my son who perhaps whispered in my ear as I lay sleeping, "Time to smile again Mom...you need to start feeling better." Wherever this change came from, I appreciate the respite. Grief is exhausting, sucking the life right out of you. Yes, my son is dead and I miss him so very much, miss all the possibility for his life and the dreams I held for him. However, despite the fact that I miss Calvin, I can still love him. I can still imagine his beautiful eyes and curly blonde hair and I can remember how he felt in my arms, how his cheeks felt under my kiss. The remembering him and his life makes my heart shine with joy and love for my only son. And with it brings a feeling of serenity, that although my son has flown away, my love for him lives on and will never die despite the passage of time. I think I'm done searching for peace, and instead will embrace it when it comes to me.
It is with a heavy heart that I extend a hug, my most sincere condolences and a welcome to Ben and Sara. Ben and Sara lost their sweet daughter Olivia a little over three months ago. Olivia was born with Tetralogy of Fallot with Pulmonary Atresia, which was Calvin's original diagnosis in utero. It breaks my heart to hear that another angel has gotten her wings. Please visit Ben's blog and show them some support here:
I guess it's almost a creepy feeling, like being the Wal-Mart greeter for the Dead Baby Club. I hate this club. I hate "welcoming" new members. I hate that once you're in it, there's no way out. I should be passing out sad face stickers at the door with the message that "Now that you're here, your life will never be the same again..." And it's true. Once you've had a child die, say good-bye to normal. Say good-bye to life as you've known it because it will never be the same again. Oddly enough, Lea at Nicholas' Touch blogged about this today. About how she fought against the idea that her life had changed forever when she lost Nicholas. Oh how I could relate to her post. I have hated every stinking second of being a babylost mother. I have railed in anger over the loss of my "before" life. It plain old sucks. It's been over a year for us now and I still hate it every day. I still think about my son everyday, I still miss him, still love him, still ache inside when I see things I would have liked to have bought for him. I don't know if those feelings ever go away. I know that Calvin's loss has softened a bit, instead of being a knife ripping through my heart and soul, it's become more of a dull ache in my chest, an ever present "awareness" of his absence.
I am saddened for Ben and Sara, knowing that they are soon to face the most painful Christmas of their lives without their precious Olivia. Shane and I were only 39 days past Calvin's death for our first Christmas post loss and it was an empty, hollow time for us. Not only did we have to fake it for our girls, but we were very much isolated with much of the family "giving us our privacy". I do understand that our grief at this most joyous time of the year probably made them uncomfortable, but privacy was the last thing we needed in those early days. What I have needed has changed over the course of this dark journey varying from needing acknowledgement of Calvin's life, to needing space and time to heal. Although I will never be or feel "perfect" in my grief, I have come to accept that because my feelings ebb and flow, that things will not always be okay with me emotionally and that I shouldn't expect them to. All I can hope for is a sense of peace, a coming to terms with this being my "now" life and not fighting for my yesterdays anymore. Not only have I had to learn with letting go of my son and the hopes and dreams I had for his life, but I've also had to learn to let go of my life as it was and that has been the hardest part since we said good-bye.
It would be my hope that my friends here will take a moment to visit A Dragonfly's Embrace to show support for this newly bereaved couple. God Bless....
I know I have emailed many of you with the link to this video but it made my day and I wanted to share it here too. What a fabulous way to spread awareness for breast cancer. Enjoy this fun video, it's sure to bring a smile to your face...check out the elderly man with the broom, too awesome!!!!!!!!!!!!
Christmas last year was brutally painful for Shane and I. We had only buried our son twenty-six days before it's arrival and had it not been for our girls, we would not have bothered with it at all. When I think back to last year's Christmas and being a freshly bereaved mother with a newborn and toddler to take care of, I shudder. Thank goodness for autopilot, that automatic survival mode that kicks in after you've suffered through something traumatic, otherwise I'm sure our kids wouldn't have had Christmas at all. While we did make it through the holidays last year, they were far from joyous. Shane and I overspent in an effort to compensate for what we had just been through, spoiling the girls and trying to give Lorelei something happy to focus on. Truthfully, it was excessive and awful and no amount of spending filled the void that Calvin's death left in our lives. It was a season of numbed sadness with pasted on fake smiles and empty hearts.
I was so completely out of tune with the season last year in fact that it was the end of January before I realized the wrapping paper was still on the floor from Christmas morning and that my tree was so dead I would have to snap the branches off to retrieve my ornaments. I didn't send a card or mail a gift. The only reason Christmas came to our house at all was for Lorelei and Georgia. I don't think I could have put together Christmas dinner if I had tried, in fact I did not resume cooking anything until Calvin had been gone about six months.
But this year feels different. This year I want to feel the joy. I want to spend the month of December happily wrapping presents, decorating and baking. I want to spend evenings curled up on the couch in my pyjamas with our girls watching Christmas specials on television. I want to feel at peace. Truthfully I am excited about the holidays and the hope that the new year will bring a positive change with it's arrival. I don't expect everything to be sunshine, roses and lollipops however, I know there are still some difficult times ahead for us. The recession and Calvin's death ground Shane's business to a halt and times are tight financially. But it's the hope and promise of a new year that keeps me looking forward in anticipation. It's the first time in over a year that I have anticipated anything without a feeling of dread in my heart. Yes, I will miss our son dearly on Christmas morning as the girls rip into their packages and gifts and I'm sure there will be moments in the day itself that bring a feeling of melancholy. I expect it. I also know that I have lived through the worst Christmas of my life and that it is behind me and I survived. That in itself is reason to celebrate. So for now, I embrace the coming holidays in all their Hallmark glory with hope for joy and change and acceptance in the year to come. Hugs to all....
We spent Calvin's Angel Day on Monday with Shane's parents, his brother Greg and wife Trisha who is expecting. The original plan was to go to the cemetery and then come back to our house for some lunch. I didn't have it in me to do any of the necessary planning. The H1N1 virus and it's aftermath of fatigue has simply drained any energy or ambition I might have had right now. I called Safeway and ordered sandwiches, veggies and dip and a cake platter and ran down to get them in the morning. I picked up Calvin's flowers while I was there and then came home to figure out just what exactly we were going to do at the cemetery. I had no idea. Between my lack of ambition, our kids, our colds and just dreading the day in general, we managed to make ourselves so far behind that when everyone got to our house and we're waiting to go to Calvin's grave, I ended up telling everyone we'd do lunch first.
After lunch, I printed off Kahlil Gibran's Joy and Sorrow and On Death to read at Calvin's grave and then went over to Mary's blog and stole her post "I Resolve" to also read. It was all I had. The weather was miserable, the wind blowing so hard I had to practically shout as I read the poems. The flowers Shane's parents brought we didn't end up putting down for fear they'd blow away and so after my quick words, and a small speech by Shane's dad we wrapped it up and came back home. I was just as relieved not to have had a big emotional scene, I didn't think I had it in me to cry in front of everyone.
The tears came later that night, as Shane and I sat alone on the porch talking about our son. I miss him. There's really not much more that can be said about it all. I'm weary and angry and sad and tired and not wanting to feel like this anymore. I want this year to be better and even though my son won't come back, I think I'm going to try and find a way to put some joy back into my life. I'm not sure how at this point, all I know is that I'm tired of feeling sad all the time. I need to find that spark inside and let some light burn through all this darkness. I need to start living again. I think I'm ready. Maybe.
Calvin remained unstable throughout the night. Dr. C had called a couple of times to let us know that Calvin was having problems with his oxygen saturation, a one point it was down in the 40 percentile. The doctors were fighting to get Calvin oxygenated and just as his sats began to rise, his blood pressure started to drop. On through the night it went like that, sats up, pressure down, pressure up, sats down. Finally at ten o'clock in the morning, Dr. C called to say Calvin was stable and we could come down to see him. No sooner had Shane and I arrived in the ICU than Calvin's pressure started to drop very quickly. I was horrified when I saw my baby. He was blue, his saturation levels only in the upper 60's, and his little mouth and tongue were swollen. Dr. C asked us to leave again, saying that he had to run some tests and that he would call us. Back in the room we paced. When it had been over an hour and we hadn't heard anything yet, Shane decided to run to McDonalds for some food because he hadn't eaten in a few days. He was gone maybe ten minutes when the phone in my room rang. It was Dr. C saying he needed to see us right away and that it wasn't very good news. I explained Shane was out but that I would call him and get him to come back right away. I called Shane and he had just pulled out of the drive thru and was on his way back. I called Dr. C and told him I'd see him in about fifteen minutes.
When Shane returned, we brought Georgia to the nurses' station and we walked down to the ICU. We were holding hands and I was scared. Shane told me not to worry, that he probably just needed to go back into surgery. When we walked into the ICU, we were immediately ushered into a small room. Dr. C, Dr. S and the pediatrician on call were all in there. They asked us to sit down and I started shaking. Dr. C explained that he suspected Calvin's falling blood pressure had to do with him bleeding somewhere but that when he checked his chest, it was fine. At that point, he had decided to do an ultrasound of Calvin's head and they discovered that Calvin had suffered a Grade Three bi-lateral brain bleed. I already knew that Grade Four was the most severe, so I knew right away our boy was in trouble. I looked directly at Dr. C and said, "So what does that MEAN?" The pediatrician on call leaned forward and started to explain that Calvin would most likely develop cerebral palsy, that he would be deaf, probably blind and profoundly retarded. I was crying hysterically by now and so was Shane. We asked if they could operate to relieve some of the pressure in his head and they replied yes, but that he probably wouldn't survive surgery. Suddenly, I realized what they were saying and knew they were asking us to let Calvin go. I blurted out, "OH MY GOD, ARE YOU ASKING US TO...Then Dr. C shhh'd me. He had not been able to look at either Shane or I the entire time we were in there and I realized he had tears in his eyes. Shane was shaking his head and crying as the doctors explained that Calvin would continue to bleed into his brain because of the heparin in the ECMO machine and that his heart couldn't function without it. "Please, my husband begged, Please save my boy." At that time I reached over and took Shane's hand and told him quietly, "Honey, they can't." We were both sobbing our hearts out as Dr. S passed me the paper to sign to remove Calvin from life support.
I signed the papers knowing Shane couldn't do it and then I asked the Doctors if we could bring Georgia down, because we didn't have any pictures of our twins together. They said yes, if her pediatrician would clear her to come down. We asked if we could hold him and they said yes and then I asked Dr. C if he would please sew up my baby's chest once it was over. With tears in his eyes, he nodded yes. We asked if we could donate any of Calvin's organs, only to be told no. No transplant team would take them because his chest had been open and exposed to infection. No one could have them because of the heparin. We asked them to call the chaplain and that we would go upstairs to get Georgia and Dr. C agreed to call the MFM doctor to get me some Ativan. They told us they would call when everything was arranged and they were ready. Back in my room, I told Shane that I wanted to keep Calvin's death private. Just us and Georgia and that we would phone and let his mom know afterwards. Greg, Trisha and Shane's dad were on their way back to the Okanagan to get back to work so they would have to be called later.
When the pediatrician cleared Georgia to go down to the ICU and when Dr. C called us, we headed down. Val, my maternity nurse was upset I was leaving just as I was supposed to be getting my daily checkup and when I explained that we were going to remove our son from life support, I don't think she understood that he was going to die. She snottily asked me how long it would take and was horrified when I answered back, "However long it takes my son to die." Crying, we walked hand in hand to the ICU, both of us taking a deep breath before we entered.
It started to feel like a dream as we walked over to Calvin's bedside and sat down in the rocking chairs beside his bed. They had curtained off his bed from view and as Shane held Georgia, they started to remove Calvin from all the tubes and wires that were keeping him alive and placed him in my arms. I was crying as he was handed to me. My handsome son was so blue and still. Unconscious, the only thing they left him on was the morphine drip so that he wasn't in any pain. Instinctively, Georgia reached back towards Calvin and the nurse, seeing her reaching for her twin, had Shane move closer and then joined their hands. My husband and I cried as our babies held hands and were together again for the first time since they were born. I was oblivious of the camera flashing, all I could see was my son, all I could feel was the pain. All too soon, I passed Calvin over to Shane and my husband said his good-byes. In all the years we had been together, I had hardly seen him cry. I saw him cry, I felt his heart breaking along with mine as we held our son, knowing he would soon die.
Spiritual care came and performed a benediction. We then had the heart within a heart ceremony, the chaplain tying a small heart around Calvin's wrist and then placing the larger heart around my neck. She explained that Calvin would always have a piece of my heart, and that the empty space in the centre of mine would signify the piece of my heart that had gone with him when he passed away. As I rocked our son, various people involved in Calvin's care came to say good-bye and to place a hand on Shane and I's shoulders. Many of the staff were crying with us. After checking Calvin's heart several times and knowing that our son was still alive, the doctors decided to move us to a quieter room, away from the hub of the ICU. As I carried Calvin down the hallway through the ICU, I felt the eyes of many parents on me, felt their pain and their fear as they sat beside their children's bedsides. I couldn't meet their eyes. Shane couldn't bring himself to hold him anymore, he was absolutely grief stricken so I sat with Calvin in the rocking chair in the private room. The lights had been dimmed but even in the low light, I could his face turning black from the lack of oxygen and I knew it wouldn't be long.
About an hour after Calvin had been removed from life support, he passed away quietly in my arms. As we sat there alone, Shane suddenly looked at me and said, "I think he's gone now, I don't feel him anymore." Wanting desperately for him not to be gone, I said, "I don't think so, I think he's still here..." Minutes later, the pediatrician came in and confirmed what Shane already knew, that Calvin had died. I cried and cried and cried, it was like a dam breaking, I knew it was over and that he wouldn't be coming back. Once my heaving sobs were under control, Shane and I left so that Dr. C could sew up Calvin's chest and so the nurses could give him a bath. They asked us we would like his hand and foot casts done in plaster to which we answered yes. They also asked if we had an outfit we would like to put on him when they called us back and I said yes, that Shane would go home and get something for him. He had to go tell his mother anyways and didn't want to do it on the phone.
Walking out of the ICU and leaving Calvin there alone in that room was the hardest thing in the world. I felt dazed, like my head was detached from my body, like I was outside myself. As we stepped out the doors of the ICU and into the hall, my head started to throb and within seconds I had the worst headache I'd ever had. By the time we reached my room I was shaking all over and as my nurse Val walked in to tell me how sorry she was, I threw up all over myself and the floor. I started crying like a child, I wanted my mother so badly. I just wanted to crawl into my mom's lap and have her hold me and rock me and tell me everything would be okay like she used to when I was younger. Val helped clean me up and helped me back into bed. Shane left to go tell Lorelei and his mom that our son had died and to pick him up a sleeper, we only had so much time. I lay down and cried great heaving sobs into my pillow as I watched the nurses tape a sign to my door, letting visitors and staff know to check at the front desk before entering my room.
Shane was back within about an hour with my bottle of Ativan and a diaper bag full of sleepers for Calvin. Together we walked back down to the ICU to dress our son and to say good-bye again. As I walked into the private room I saw Calvin lying on the table. It was like a miracle had taken place. He was no longer black, his colour had returned to normal and my son looked like he was sleeping peacefully. The ICU nurse Gabrielle had already started to dress Calvin and as we arrived with his sleepers she told me, "Go ahead and dress him, hold him all you want, but you need to know that he's starting to get a little stiff." Rigor mortis was already setting into Calvin's body but I didn't care. My son looked so beautiful and at peace. He was clean from his bath, Dr. C had sewn up his chest and every tube and wire had been removed. He was my baby and I wanted to hold him again more than anything. I carefully dressed Calvin and then picked him up. I rocked him and kissed him and told him how much I loved him and how my heart had broken when he died. I couldn't get enough of holding him. Shane couldn't bring himself to hold Calvin because of the rigor and he hadn't wanted to bring the camera down to take pictures of him. I wished with all my heart he had because Calvin looked so incredibly beautiful at that point, so pretty and at peace. All too soon, we left to return to my room, leaving our son behind in the ICU, leaving our hearts and hopes with him.
I woke up feeling cheerful and cautiously optimistic that Calvin was going to be okay. That feeling was fleeting after receiving a call from Dr. C that a large blood clot had been discovered in the ECMO machine. If the clot made it's way into Calvin's body, it could cause a devastating stroke. The only solution was to remove Calvin from the machine, see how well his heart was beating upon restarting it and as a last resort, putting him back on ECMO if things weren't going well. Dr. C mentioned that they would try a less invasive form of ECMO, the venous venous machine that instead of being hooked into Calvin's arteries, would be attached in through his veins. It was a light-weight version of ECMO with fewer complications. He would be going back into surgery that afternoon.
Meanwhile, Shane had gone to visit our son in the ICU and came back elated. Calvin was awake and looking around. He didn't appear to be in any discomfort and had responded to his dad's voice. We both took this as a hopeful sign that our son wouldn't need to go back on ECMO, that perhaps his heart had healed enough to beat suffiently on it's own.
All too soon, Calvin was taken back into surgery. We had been told to expect two to three hours before we'd hear anything. By the five hour mark, at eight-thirty pm, I told Shane that something was wrong, it was taking too long. Shane went down to the ICU to see what was going on only to be told there was no news. Maybe another two hours went by before Dr. C called to say that when they had removed Calvin from ECMO, his heart still wasn't healed enough to beat on it's own so they had put him on the light version of ECMO. Unfortunately, Calvin's body started to react to the new machine, producing lactates and histamines that Dr. C said was Calvin's body's way of saying it was very "unhappy" with the new form of life support and that he needed to unfortunately put him back on the original machine. Shane and I were devastated. We knew that Calvin's odds of survival had just dropped to thirty-five percent and that this second round was more likely to bring on complications. However, it was once again our son's only chance so giving the go ahead to have Calvin put back on ECMO, Shane once again signed the papers and Dr. C went back to the OR with Calvin.
Around midnight, Dr. C called to say that Calvin was having difficulty with his blood pressure and oxygen saturation and for us not to come down to the ICU. He said he would be monitoring Calvin through the night and that he would call periodically to give us updates. Worried, Shane headed home to sleep on the couch and I settled in for a restless night with Georgia.
We didn't sleep much that night. Shane finally went back down to spend some time with Calvin after I took Trisha down to see him. I tried to rest but couldn't, my mind too busy with worry over my four day old son. Dr. C finally left around eleven or twelve o'clock the day after Calvin was first brought in for surgery, finally going to get some rest after spending more than twenty four hours at Calvin's side. Shane bid him good rest and Dr. C told us he would be in touch after he'd had some sleep.
It was sometime that afternoon, Calvin still bleeding copious amounts that two things happened. A decision was made to lower the dose of heparin in the ECMO machine to try and control some of Calvin's bleeding and our son suffered not one, but two massive overdoses of antibiotics. About two o'clock that afternoon, Shane came upstairs with a grim look on his face. "I have something to tell you and please don't freak out, " he said. He then proceeded to tell me that the pediatrician on call in the ICU, who had been on duty for thirty-six hours straight, in his fatigue had accidentally overdosed Calvin not once, but twice on massive amounts of antibiotics. The doctor, after realizing his mistake, tearfully approached my husband and told him what had happened and that Calvin would need to be put on dialysis to clean the drug out of his system. We were now risking organ damage due to the overdose of drugs he had been given. It was a tense eight hours. Calvin was placed on dialysis and amazingly enough his own body had already started the process of getting rid of the drugs. He responded very well and within eight hours was out of danger. I, on the other hand was furious. I kept thinking, How? How could this happen to our boy when he's already facing so much? How could they let a doctor stay on duty for that many hours straight? Why Calvin? I was so sad for our son, for all he had been through already in his short life.
Dr. C came back to the ICU later that evening, upset by what had happened to our son while he had been gone. He checked Calvin's output and miraculously, Calvin's bleeding had slowed down. He had been through fourteen units of blood by this point, enough to entirely replace all of his own blood almost four times over. For all that our son had been through, the slowing of the bleeding was encouraging and Dr. C was optimistic. It was good news. I felt relieved for the first time since Calvin's surgery and I dared hope that things would be okay. Shane and I kept going down to check on and off throughout the night, only to be told that Calvin was holding his own, that our son was improving. We were so relieved.
After feeding Georgia at six am, I sat nervously waiting for Shane to come back from the ICU to get me. He arrived at about twenty minutes to seven and we took Georgia down to the nurses station so that we could walk Calvin to the operating room. My heart was thudding in my chest as Shane wheeled me downstairs and the tears were already starting to form. After scrubbing our hands, we headed immediately for Calvin's bed. Painfully, I rose from my wheelchair and walked over to the rocking chair beside his bedside. Wendy put Calvin in my arms and we snuggled for about ten minutes. All too soon, Dr. C came and told us they were ready for him. Shane took Calvin from my arms and we walked the short walk through the ICU to the operating room doors. We stood there for a moment, kissing him and telling him how much we loved him and to please be strong and fight for us. My heart was breaking as we handed him over to the nurse to take him into surgery. She told us to go back upstairs and that it would probably be at least four to five hours before we heard anything.
Back in my room, I broke down sobbing. Shane held me close and the two of us drifted off to sleep in my hospital bed. A couple of hours later, I awoke to feed Georgia and have my daily checkups with the MFM doctors and the pediatrician. We had asked Mandy, the cardiac care nurse involved in Calvin's case to hold a special meeting for our family at eleven o'clock that day, to explain what Calvin was facing and what was happening to him. I had been afraid for so long that he would die, but everytime I brought up how serious his defect was, I felt that Shane's parents either didn't take me seriously or were so positive that nothing could happen that they didn't want to talk about the what if's. When Mandy came to get Shane's parents and Greg and Trisha, I tried to rest and not worry about what was happening with Calvin. It was impossible to do. Both Shane and I had been existing on about two hours sleep a day since the twins were born and although I was bone tired, I was so worried about my son that sleep wouldn't come.
The hours seemed to pass so slowly. Both Shane and I were restless and anxious. At about the six hour mark, when we hadn't heard anything, Shane decided to go down to the ICU to see what was going on. At the ICU, Shane spoke with Mandy who had been told by Dr. C that everything was going extremely well and that Calvin was doing great. Shane had just come back to the room to report that our boy was doing fine when Dr. S walked in with a serious look on his face. Calvin's heart was so traumatized by the magnitude of the surgery that when they had gone to restart it, they realized the right ventricle was unable to squeeze properly enough to keep his blood circulating. He then handed over the consent forms to have Calvin placed on ECMO (extra corporeal membrane oxygenation), in other words, life support. Immediately I turned on Shane and started screaming at him, calling him a liar for telling me that our son was okay. Mandy came running into the room at that point, saying that Shane had no sooner left than Dr. C called to say that Calvin needed to be placed on life support or that he would die. Dr. S held out the papers for me and I shook my head, "No, I can't, the other doctor said that ECMO is a bad thing, " I said crying. "Would you do it if it were your child?, I asked Dr. S. He looked directly at me and very bluntly told me, "Put it this way, it's the only chance he's got," he said. Shane literally grabbed the paper and pen out of Dr. S's hands and signed. As they left, Dr. S told Shane to read through the complications so that we would be aware of what could happen and they both agreed that it would be best for me not to know at that point. I was a sobbing heap in the bed, terrified for my son.
Originally told that Calvin's surgery would take eight hours, we were at the fourteen hour mark before he came out. At eleven o'clock that night, we finally got the call to come down to the ICU to see our son and have a consult with the surgeon, Dr. C. Greg and Trisha came down with us to the consult room and we waited for what seemed forever for Dr. C to come in. I was in a complete daze by then, from worry, from the drugs I was on for pain, from lack of sleep. I was nearly out of my head. I needed Greg and Trisha there to help me understand and remember what was being said to me about Calvin's condition. Dr. C told us that Calvin's Truncus was a true case of Type 3, that his pulmonary arteries came off the trunk at a 180 degree angle. There was no black and white, he was a true rare type 3. He also told us that the bovine artery and the plastic conduit took up so much of the muscle of the right ventricle that it wasn't until they had tried to start his heart again that they realized how bruised his heart muscle was from the surgery. He explained that Calvin was bleeding alot right now and that he had needed nine units of blood during his surgery. He was very concerned about the bleeding and being on ECMO didn't help because the machine had to be continuously infused with heparin to prevent blood clots from forming inside the tubing. The blood thinners were making Calvin bleed all that much more. That said, Dr.C felt that by keeping Calvin on ECMO for a few days would give his heart a chance to rest and heal and that hopefully, when they tried to restart it again, it would beat properly. When I asked Dr. C how long Calvin could stay on ECMO, he told me that usually by seven days they know whether the patient will recover or not. He also told us that if Calvin came off ECMO and then needed to be put back on it for any reason, that his chance of survival dropped to thirty-five percent. Right now we were looking at sixty-five. Dr. C also explained that Calvin had so many wires, tubes and monitors coming off him and that with his chest left open, it may be hard for us to see him that way. He said, "Just look at his face, touch him and talk to him. Let him know you are there." He explained that Calvin would not be conscious, that they were keeping him asleep to minimize his pain but that for his sake, we needed to let him know we were there.
Shane and I finally got to see our son at midnight, seventeen hours since we took him to the operating room doors. As we approached his bedside, which had been moved beside the operating room just in case, I knew that our boy had been through so much. I felt Shane's knees start to buckle beside me and I held him up so that he didn't faint. Seeing Calvin like that was too much for Shane and he started to cry. Telling me he couldn't stay, he left to go outside and get some air. I walked over to our son's bed and looked down at him. He was bloody and lying there so still. It was absolutely heartbreaking to see him like that, but I had to see him. I had to touch him and tell him I loved him and kiss him and let him know that mommy was there. I also had to see him for me, so that my vivid imagination didn't drive me crazy wondering just how bad he looked. I had to see him just in case anything happened. I looked at Dr. C who had just spent seventeen hours operating on our son and who was now perched on a stool by his bedside. "What now?" I asked. "Now you go and get some rest and we wait, " was his reply. "What about you?", I asked. "I just want to make sure he's doing okay before I go and sleep, " said Dr. C. Thanking him profusely, and admonishing him to go and get something to eat, I kissed Calvin goodnight and went back to my room where Shane, Greg and Trisha waited. I felt like I was going to fall apart, to break down any second and I was amazed that both Shane and I were still functioning. As I walked in, I looked at Shane and said, "So now we wait...."
Shane and Calvin snuggling in the ICU the day before Calvin's surgery
Rocking our son, I spend as much time as possible with him before his surgery.
We had gotten an early morning visit from Dr. S to let us know that Calvin would be having his surgery tomorrow. He told us that we would be meeting with the surgeon, Dr. C, sometime later on that day. Calvin's condition had improved so much that he was off everything, no CPAP, no NG tube, nothing but a monitor on his little foot making sure his oxygen saturation stayed good. We spent the entire day going back and forth between our room and the ICU. During an afternoon visit when both Shane and I went down together having left Georgia at the nurses' station, I arrived in time for Calvin's feed. His ICU nurse Wendy was just about to give him a bottle and she asked me if I would like to do it. Immediately I said yes and Shane grabbed me a rocking chair to sit in while Wendy handed me my son and the bottle. Calvin drank ferociously, his appetite brought a smile to my face. He didn't look frail or sick at all. He was a hungry, alert boy, gazing at me the whole time I fed him. We didn't stop looking at each other and I couldn't stop smiling at my beautiful son. I had a tremendous amount of hope that everything would be alright. After Calvin's feed, I tried with no avail to get him to burp. I rubbed his back, patted it, put him right up to my shoulder but no burp. Shane also tried and he is the expert burper in the family but he couldn't get a burp either. When Wendy came to check on us, we mentioned that Calvin hadn't burped and she took him from me and began thumping quite strongly on his little back. I was horrified and worried she was hurting him but a second later Calvin gave us the biggest burp ever and in moments was snuggled back in my arms. I rocked him and rocked him, telling him he had to be strong for us, that he had to fight because we needed him here with us. The whole time I held him, he gazed silently into my eyes. All too soon, it was time for Shane to take me back upstairs to feed Georgia so I left, telling Calvin I'd be back to see him later.
Eyes wide open, this time with Calvin was so memorable because he was awake almost the whole time.
Happy snuggles with our boy.
Shane spent much of the day with our son. He felt it was important for Calvin to know we were there for him and that he was loved so very much. Shane spent much of that day holding our son, playing music for him on his Blackberry, telling him how much he was loved and kissing him. He would come back up to the room for awhile to check on Georgia and I but he was restless when he was apart from Calvin and the ICU kept silently calling him back.
About seven o'clock that night, we got a message to come to the ICU together to meet the surgeon, Dr. C. We left Georgia in care of the nurses in Fir, the locked down ward for drug addicted mothers, the only ward with a fulltime nursery. They knew of our situation and were quite willing to watch Georgia whenever we had to go down to visit Calvin. As we walked into the ICU, we were greeted by Dr. C who led us to a small private room. I was a bit taken back looking at him, for some reason, I had expected Dr. C to be older. He looked to be about my age, like someone I could have gone to high school with and had the most charming smile and demeanor. Instantly, I felt comfortable with him. He explained what Calvin's surgery would entail, fixing the hole in his heart, connecting a bovine artery to one of the valves and putting in a plastic conduit from the heart to the lungs. Dr. C explained that the Truncus operation was one of his "favorites" because of it's complexity. He explained Calvin would be put on ice, to lower his body temperature and give them more time to work with his heart stopped. He told us to expect that Calvin's chest would be left open to prevent the heart from hitting the ribs during swelling and that he would have basically a clear bandage over his open wound. When it was all over, they would restart his heart. At that point I asked what happened if his heart didn't restart and Dr. C said, "Well then we go to ECMO which is a form of life support that we don't like to use much, it reduces his odds of surviving if he needs to be placed on it, but basically it's the last hope." He also told us that the surgery would take about eight hours and that Calvin would need alot of blood products. "Truncus patients bleed, and not just from their chests, from everywhere," he said. Suddenly I was terrified. It was nine o'clock at night and my baby was having surgery at seven o'clock the next morning. As we got up to go, Dr. C walked over to Calvin's bed with us and looked down at him and said, "He sure is cute". I looked at Dr. C and said, "Take good care of him please." I had tears in my eyes as he said, "I will, I promise." I looked back at him and said, "I trust you." Dr. C then told us he would see us in the morning and bid us a goodnight.
Suddenly I felt the urge to pray. I'm not an overly religious person but at this particular moment, I needed to pray and I needed the whole family to pray with me. I asked the ICU nurse to call the hospital chaplain and ask him to come and pray for my son. When she called, he was at home an hour away and he asked if he could come down in the morning and do it. I answered no, because Calvin's surgery was starting at seven and the family wouldn't be at the hospital at that time. The chaplain agreed to come and within the hour, Shane, Lorelei, Greg, Trisha, and Shane's parents, Karen and Garry were down in the ICU at Calvin's bedside. We all held hands in a circle as I held Calvin in my arms and the chaplain prayed for Calvin to have a safe surgery. It was an extremely powerful moment and I could feel the love in the room for my son. Shortly after the prayer ended, Shane's parents left to take Lorelei back to the house to go to bed. Shane wanted to spend some more time with Calvin, so he asked Greg to stay with me and Georgia in the room. That way, I too could come down and see Calvin knowing that Greg and Trisha were looking after Georgia.
Shane came back to the room around three am to have a little nap. I had dozed on and off with Greg there keeping me company (Trisha had eventually left around one am), and after feeding and changing Georgia, I decided to go down to the ICU to spend some more time with my son before his surgery. Somehow, I managed to wheel myself downstairs and I spent the next hour and a half just rocking my son and telling him how scared I was and how much I loved him. As I was getting ready to go upstairs, tears streaming down my cheeks, I again told him to fight, to be strong, that I needed him to get better. Calvin was looking at me with his big blue eyes and suddenly he winked at me. It was like he understood what I had just said to him. With one last kiss before I went back upstairs, I told him again and again how much I loved him and that I would see him before his surgery.
Shane was awake and very subdued when I got back into the room. He said he needed to be with his son and that he would be back for me before the surgery time so that we could walk Calvin to the operating room. With a kiss I watched him go and as I lay down to get another hour of sleep or so before it was time to go back again, I started to cry. I was so scared. I had never been this scared in my life.
Having been removed from CPAP, taken on Shane's Blackberry.
Calvin with his soother in the ICU.
I had called my grandmother to tell her about the births of the twins and arranged for her to come and visit. I knew she would be there sometime around three o'clock when visiting hours in the maternity ward started. Meanwhile, we had another consultation with Dr. S explaining what Calvin's condition was all about and the repairs he would need to fix his heart. We still had no surgery date or time and because it was a stat holiday, the hospital was on bare bones staff and we wouldn't know when his surgery would be until sometime the following day.
Shane spent most of the day going back and forth between the NICU and our room. He spent hours visiting with Calvin, holding him, snuggling him and singing to him. In between visits with our son, he would come back to the room and show me pictures taken on his Blackberry and tell me what was going on with him. He had been put on CPAP the previous evening and his breathing was improving enough that the doctors were preparing to remove him from it. It was good news. I had been highly distressed to see Calvin on the CPAP machine (constant positive air pressure), his little face almost obscured by the mask. All around, Calvin's condition was improving and it gave us hope that things would be alright. I couldn't wait to get my catheter out so that I could go down to the NICU to visit him. As it turned out, my aunt, uncle and grandmother arrived before that would happen and we spent a happy hour in the room. My grandmother who is ninety, took great joy in holding Georgia while we talked about the births and about what might happen with Calvin's surgery. Shane offered to take her down to the NICU to see Calvin and she went happily only to tell me that he was absolutely beautiful and that she would never forget him sucking away on the big green soother the nurses had given him. For once, it was a pleasant visit with my family although very short and they left shortly after seeing the babies.
Sometime around suppertime, I got my catheter out and Shane offered to take me down to the ICU where Calvin had been transferred. All cardiac patients are transferred to the ICU when they are stable to await surgery and to receive specialized care. When we got there, we went through the ritual of washing then disinfecting our hands and then Shane led me over to the bed where our son lay. He was awake and looking around and when the nurse asked me if I wanted to hold him, I eagerly said yes. It was such a beautiful experience, even in the ICU with all the monitors and alarms going off all the time and for a few moments, it was just Calvin and I. I couldn't get over how much hair he had, curly strawberry blonde hair tufting everywhere and the biggest blue eyes. His eyes were such a deep shade of blue that in all of our pictures, they look black. He was so beautiful. I just kept staring and staring at him, looking at all his little features. His nose was all Shane, same with his lips, but the shape of his eyes, his ears, his hands and feet were all me. All my babies have been blessed to get my Dad's hands, long slender fingers and just really beautiful hands. All too soon, it was time for me to go back. There is no special care nursery for situations like ours, so Georgia was being watched at the nurse's station. I kissed him several times and told him how much I loved him and needed him to be strong and told him I'd see him later. I was expecting to hear from the surgeon that night, so I knew I'd be back to see him again shortly.
The first two days of Calvin's life were fairly uneventful and gave both Shane and I good opportunity to spend time with our son. We were left hanging on a surgery date and time however and that had made me very nervous, not knowing when our son might be whisked away. Looking back, the day he was born, and the next two days are times I treasure. Days full of love and hope for our boy, spent snuggling and kissing him and telling him how much he was loved. He was so very, very loved.
Georgia is born through my incision at 2:47pm. Calvin is born one minute later.
Georgia being assessed after her delivery.
Shane and I spending precious moments with Calvin before he is taken to the NICU.
It's been a quiet day here. Everyone in our family is sick with H1N1 right now so it was decided we would celebrate Georgia's first birthday this coming weekend. We will also be marking Calvin's passing this weekend coming as well. Today wasn't as hard as I thought it would be, while I wish with all my heart my son was here celebrating his first birthday with Georgia, maybe it's because we haven't had the official party yet with cake and presents so it hasn't really sunk in yet. We spent a quiet day at home, I snuggled with Georgia and remembered her birth one year ago with warm feelings of love, for her and for Calvin. The day they were born was truly one of the happiest days of my life....
I woke up at 7:30am after a miserable three hours sleep. I joined Shane and Lorelei in the livingroom of our rented home long enough to eat a bowl of cereal and decide to go back to bed. Because Lorelei had just turned three and wasn't very good at leaving me alone when I tried to nap, I locked the bedroom door behind me and crawled into bed. About 9:30am I rolled over and felt a "pop" inside me and instantly started gushing water. Trying to sit up in bed, I yelled for Shane that my water had broken but it was coming out so fast that I couldn't stand up and the door was still locked. In panic mode, Shane grabbed a knife and popped the lock to get into the bedroom and was instantly and completely scared out of his mind. After telling him to grab me a towel and help me out of bed, I waddled to the bathroom to finish gushing over the toilet and I told Shane to call his parents. As I was getting cleaned up, he called his parents to start the long drive to Vancouver and then called our family friend Jane in Abbotsford to drive in to look after Lorelei. I got dressed and Shane and Lorelei then drove me to Labour and Delivery and dropped me off and then went back home to wait for Jane to show up to look after Lorelei.
At the hospital, I was admitted and given a gown to put on and led to a bed. Soon, a student nurse named Brock was in with me and he had been instructed to start my IV. I'm pretty sure he'd never done one on a live person before and he was so scared that he originally stabbed me with the IV needle only to yank it out again in horror and then as I started to bleed all over the place, he blushed, apologized profusely and went to get another nurse to help him. A gazillion questions followed as they hooked me up to the fetal monitors, "How do you know your water broke, maybe you just peed, sometimes that happens when you're this far along and the baby sits on your bladder...." Well, I know for a fact that I didn't pee and was a little offended that they figured that's what had happened but I continued to answer their questions and let them poke and prod me with needles until I had to get up to go to the bathroom. As I stood up to get out of bed, another gush of amniotic fluid came out and splashed down onto the floor and all over poor Brock's shoes. Still, the nurse grabbed the little paper they use and was dipping it into the puddles on the floor to determine whether my water had actually broken. Duh. Anyhow, it was not long after that they came and told me to call my husband because I would be going into the operating room in less than an hour. I called Shane who was just getting Lorelei situated with Jane and he was on his way.
Shane and I parted ways at the door of the operating room. He had to get gowned and scrubbed and I had to have my spinal anesthetic. As I hunched over, as much as I could with my enormous belly, the student anestheseologist tried repeatedly to get the needle into the right place in my spine. By her sixth try I was sobbing and scared and tired but thankfully, it went into the right place and within a minute of swinging my legs up onto the table, I couldn't feel anything from my chest down. Shane came in and then things started to progress very quickly. We had a team of sixteen people in the delivery room with us including doctors, nurses, the anestheseologists, ICU team, cardiology and a couple of students. It was crazy. I remember lying there and finally asking if we were going to get started soon when the doctor said, "Baby A is just about out, Shane get your camera...." Shane stood up and got a picture of Georgia being born through my incision. He was shaking when he sat back down next to me. The nurses were laughing over how big she was and how none of them had ever seen twins with double chins before. Georgia weighed in moments later at a hefty 7lbs 10oz. Hearing her cry for the first time brought me to tears. One minute later Calvin was born and Shane was up going back and forth between our two babies. It seemed like forever before I heard Calvin cry and I was starting to worry. We had been told he might be blue at birth, that we might not be able to hold him depending on how his condition was and we knew they would be taking hime to the NICU right away. Within about five minutes, Calvin was placed on my chest and Shane and I fell in love with our son. He was gorgeous and pink and looked so perfectly healthy you wouldn't know anything was wrong by looking at him. I kissed him and stroked him and told him how much I loved him and all too soon, the team collected him to take him to the NICU to stabilize him and get a cardiac echo to determine what condition he was born with. Shortly after they took Calvin away, I started feeling faint and then I started shaking uncontrollably. Shane freaked out because my lips were turning blue and as I turned to look towards the blood pressure monitor, I noticed my pressure had fallen from a sky high 201/155 to 70/45. Because I was still in surgery, the doctors were still working on tying my tubes and sewing me up, they became frantic to keep me conscious. I kept being given medicine to bring my pressure back up but within minutes I was shaking and my pressure was dropping again. The doctor kept telling me to keep my eyes open, talk to her, do not faint as they frantically got a pair of pressure stockings on me. Every 30 seconds, the stockings would inflate and squeeze my blood towards my organs, helping my blood pressure stablize. Finally, I started feeling better and the next thing I knew, we were headed into recovery, Georgia in my arms.
In recovery, I got to spend a couple of precious hours holding my daughter and bonding with her. I never had that with Lorelei who was twenty-four hours old the first time I ever saw her. Within an hour of my surgery, Georgia was being placed on my breast to feed and I was incredibly happy and in love with our babies. I was still feeding Georgia when Dr. S strode into the recovery room and introduced himself. He was the cardiologist in charge of Calvin and he had come in to give us his diagnosis. Truncus Arteriosus Type 3 he said gravely. Shane and I were under the impression that Tetralogy of Fallot was the more serious of the two so for a minute we were relieved until Dr. S explained that Truncus was far worse and Calvin's Type 3 was extemely rare. So rare in fact that in his seven years at Children's Hospital, Dr. S had never seen a case of Truncus Type 3 until our son. He explained Calvin would be having open heart surgery in a couple of days, that the surgery was necessary right away to prevent pulmonary hypertension and that without it, he would die. I was terrified. He told us he would talk to us later, once we were settled into our room and he left to give Shane and I some more time with Georgia.
On the way up to our room, we stopped at the NICU to see Calvin. He was huge compared to all the other premature and sick babies. It was hard to believe that my 6lb 13oz son was sick. I couldn't believe how still he lay as they poked his feet for blood. His breathing looked a little laboured and they explained he would be getting some help breathing once he was assessed. We went upstairs to my room and settled in to wait for the family. Shane's parents and his brother and his wife showed up a few hours later. There was the most incredible feeling of joy as we passed Georgia around, everyone taking turns holding her as Shane took them one by one downstairs to the NICU to meet Calvin. It was such a surreal day, so beautiful and full of love and wonder. I remember laying in my bed that night, holding Georgia and feeling like this had been one of the best days of my life. We had gone from a family of three to a family of five in mere minutes and the love I felt for my babies was so unbelievably strong. Shane and I decided in those quiet moments in our room later that night that we would not worry just now, that we would simply enjoy having our babies arrive safely, with no complications and that today was a day to celebrate their births and our love for each other and our children.
I leave you now with some pictures of our twins at birth and of Georgia throughout her year. It's been quite the year, nothing like I would have expected. Today I am at peace remembering that beautiful day one year ago, when my babies came into the world surrounded by love and joy. I will continue Calvin's story over the next couple of days...
Georgia Leigh Mayer born November 10, 2008. Pictures from Georgia's first year.
One year ago today, Shane and I were in our rented home in Vancouver awaiting my scheduled c-section at Women and Children's Hospital for November 19th. I was anxious and feeling as if things were about to start going wrong. Four days prior, I had started swelling tremendously in my left leg and foot, so bad that I couldn't get a shoe on. That night, a Thursday, I had taken a taxi to Labour and Delivery to get checked out because I was terrified I was developing pre-eclampsia. Upon being checked over, the doctors had felt that even though my blood pressure was creeping up and that there was trace protein in my urine, that it was "normal" pregnancy swelling and I was sent home. So there we were. Sunday, November 9th and I was restless and anxious that there would be an impending disaster. I couldn't sleep. I remember getting out of bed at three am and pacing and then logging on to an expectant mother site I visited at the time and then climbing into bed about an hour and a half later, still anxious but exhausted. Little did I know that in five hours time, my water would break and my twins would be on their way. But first, a little history....
Shane and I have struggled to have children. When we married in 2003 it was with the intent to start a family immediately. I had been previously married with no children and am eight years older than my husband so at that time, my clock was definitely ticking. Almost immediately after Shane and I married and I went off the Depo shot, I became pregnant. Unfortunately, I had undergone gallbladder surgery not knowing I was pregnant at the time and had been on a plethora of medication from narcotic painkillers, general anesthetic, blood thinners to antispasmodic drugs. About a week after my surgery, I realized I was late and took a pregnancy test which turned out positive, but only faintly positive. A week later, I started bleeding and was devastated to learn I was miscarrying. Figuring the miscarriage was due to the surgery etc. we decided to wait a cycle and try again. In early February as soon as we started trying again, I became pregnant again only to miscarry within weeks of my positive test. Suspecting something was going on, my ob/gyn ordered genetic and immune testing done on both Shane and I. Shane's tests came back fine, however my tests showed I had high levels of antinuclear antibodies, anti cardiolipins and lupus anticoagulent. Not being sure what these test results meant, my doctor figured she would try me on baby aspirin for my next pregnancy and that all would be well. Four months later I was pregnant again only to begin miscarrying within two weeks of my positive test. By this time I was deeply depressed and desperate for answers so I begged my doctor to refer me to the recurrent pregnancy loss clinic at BC Women's Hospital. I waited four months for the appointment to roll around and Shane and I drove down to Vancouver in January hoping to find some answers. It was at this appointment and after reviewing my bloodwork that I was diagnosed with Antiphospholipid Antibody Syndrome, an autoimmune disorder that causes my body to make blood clots in the placenta which eventually kills the fetus. Treatment for this involves twice daily injections of blood thinner while pregnant, daily dose aspirin for the rest of my life and progesterone to support my uterine lining. It was also there at Women's Hospital that I discovered I was pregnant yet again. I was put on heparin immediately and our daughter Lorelei was born at thirty-six weeks by emergency c-section when I suffered a partial placental abruption. I was so relieved to finally have a child, and so emotionally traumatized by all we had gone through, I didn't think I would ever want to try for another child again. I was wrong. When Lorelei was eighteen months old, we decided we wanted to give her a sibling. Again, I got pregnant immediately after having my IUD removed and I had started the blood thinners at ovulation to make sure that if we did conceive, the pregnancy would be protected. I had no idea, no doubt in my mind that anything could go wrong. At eleven weeks, I went in for a routine prenatal appointment confident that everything was okay. I didn't even freak out when my doctor couldn't find the baby's heartbeat because I was sure it was just too early, however she was concerned enough to have me go over to the hospital for an ultrasound. During my ultrasound, it was confirmed that my baby had stopped growing at seven weeks four days. I was heartbroken and since I was showing no signs or symptoms of miscarriage, my doctor arranged a D&C and pathology to find out what had gone wrong. We were told that we could not under any circumstances try to conceive until we knew what had happened. Four months later, the results came back that our baby, a girl, was missing one of her sex chromosomes, a disorder known as Turner Syndrome. Had she lived, she would have been infertile, short statured and may have had some learning disabilities.
After being reassured that it wouldn't happen to us again, Shane and I started trying to conceive again to no avail. It had almost been a year since my last positive pregnancy test when I asked my doctor to prescribe me some Clomid, hoping that my ovaries just needed a jumpstart. I was prescribed the lowest possible dose and got pregnant the first time around. We were excited and scared, hoping beyond hope that everything would work out this time. Within weeks I was measuring big and was struggling to fit into my clothes so my doctor ordered a dating ultrasound to make sure my dates were correct and that I wasn't further along than we had originally thought. I was just over ten weeks pregnant when I went for the scan and I was terrified that I would hear the words that I had heard so many times..."Not viable". As I lay on the table, I was shaking and the tears were starting to form. The ultrasound tech was taking her time and when she finally put the wand down, I asked her, "Is there a heartbeat?" to which she replied "Yes, Would you like to see your baby?" Overjoyed I answered yes and was thrilled to see the little sac with the flashing heartbeat on the screen. Then moving the wand over to the other side of my belly, she said, "And here's the other one...congratulations, you're having twins!" I screamed "What!" so loud, I scared her and then I started crying so hard I couldn't catch my breath. Concerned, she asked me if they were happy tears to which I answered "Yes!". She printed out six pictures for me and still bawling, I stumbled out into the hallway, digging in my purse for my cellphone to call Shane who was at home with Lorelei. When I got out into the parking lot, I was bawling so hard Shane couldn't understand a word I was saying on the phone and finally yelled, "Are you alright?". "There's two babies, we're having twins..." I said. "Awesome!" was his reply. And so it started. Our journey to having two babies.
Our joy was to be short lived however as my doctor felt that because of my age, I needed to have special testing done in Vancouver for birth defects. I was dead set against having an amnio due to the risk of miscarriage so my doctor suggested we go for a nuchal translucency ultrasound. At the nuchal translucency, Twin A's nuchal fold measured 1.8mm and Twin B's 1.9 mm. Given my age and their measurements, the MFM doctor felt I should have an amnio to rule out Down Syndrome and Trisomys 13 and 18. Again we declined but agreed to have my pregnancy followed by Maternal Fetal Medicine in Vancouver which would mean a trip down for my fetal anatomy scan at twenty weeks and then more visits barring complications.
My pregnancy progressed fairly smoothly up to my twenty week scan, although I was incredibly uncomfortable already by the five month mark. I was huge and between heartburn and a sore back, I spent much of the beginning of summer napping and taking it easy. When Shane and I arrived in Vancouver for my fetal anatomy scan, we were nervous and excited. We were dying to find out the gender of our babies because both of us were hoping for at least one boy. I had already suspected I was carrying a boy, having had a quick peek at one of the twins bottoms during an ultrasound at sixteen weeks to check my cervical length. Sure enough, as the tech started the scan we were told that Twin B was a boy and A was a girl. We were overjoyed. As the scan progressed and I lay back watching the screen on the wall, I became concerned when I noticed that the tech was spending a fair bit of time examining the heart of one of the babies. When he left to get a doctor to check something and then suddenly five or six doctors were in the room with us, I knew something was wrong. At that point, I was sure the problem lay in Twin A, our girl. The MFM doctor explained that there was a problem with Twin B's heart and that we would be having a consultation with a pediatric cardiologist following the scan. Instantly I began to cry, suddenly terrified over what could be happening.
The pediatric cardiologist and a nurse met with Shane and I in a small conference room following the ultrasound. We were told our son had a large hole in his heart (ventricular septal defect), only one large artery coming off the valves and it didn't appear that he had a pulmonary artery. We were told it was very serious and that it could be possibly one of two conditions, Tetralogy of Fallot with Pulmonary Atresia or Truncus Arteriosus. We were booked in the following day for a cardiac echo and a consultation with a geneticist. As we called home to tell his parents we would be staying an extra day, I started sobbing, explaining to Shane's mom that there was a problem with our boy's heart. The next day I had an ultrasound with the pediatric cardiologist that lasted approximately two hours. Afterwards, we met with the geneticist and a social worker who explained that our son's defect was very complex and possibly related to a genetic disorder called Q22 deletion or DiGeorge Syndrome. We were told our twins would need to be born in Vancouver and that our son would need ICU care immediately, possibly prostaglandin to keep his patent ductus open and surgery. Depending on his exact diagnosis, he could possibly need a shunt put into his heart immediately upon birth and open heart surgery anywhere from birth to six months afterwards. It was at this point we were offered selective reduction. They explained that they could terminate our boy's life but not without risk to his healthy sister. Instantly our answer was no. We would not under any circumstance risk either of our babies' lives and that we would prepare to do whatever it took to give our son the best chance at life.
Upon returning home, and after receiving the report from Women's Hospital about my pregnancy, my doctor decided that she wanted me to live in Vancouver from twenty four weeks on in case I went into premature labour. She said that if I went into labour in the Okanagan that I couldn't be guaranteed a bed at Children's where my case was already being followed. At that point, Shane and I made the momentous decision to pack up our house and move to Vancouver to await the birth of our twins. Luckily, I found a place called Three Links House which provides housing for out of town families seeking medical treatment at Children's Hospital. We got a three bedroom top floor of a house, fully furnished with cable, utilities and phone included for thirty dollars a day. After writing several letters to the various charitable organizations in town, the Knights of Columbus and the Lions Club agreed to pay our rent for the entire time we were living in Vancouver which allowed us to keep our home here. Thank goodness for the kindness of those organizations. Which brings us to the night of November 9th, 2008 where I restlessly paced, convinced something horrible was about to happen.
Today as I recalled the events of last year and with the anticipation of Calvin and Georgia's birthday tomorrow, I went to the store to buy Calvin some flowers. As the woman walked over and asked if there was something she could help me with, I told her I needed something to bring to the cemetery and that it would have been my son's first birthday tomorrow. I started to cry. Desperately trying not to completely break down, I told her that I wanted a Happy Birthday balloon on a stick that I could put in the ground at his grave. I also wanted some flowers. The wonderful lady helped me pick out some white mums with some baby's breath, a small blue teddy bear and the owner hunted high and low for a balloon and something to put it on so that I could stick it into the ground. He came out with a Happy Birthday plastic plant stick in blue and a blue balloon which he tied to the stick with blue ribbon and then clipped on the little bear. The lady asked me what my son's name was and I told her Calvin. She wrapped up my flowers in green paper and tied multi coloured ribbons around the bouquet making it look cheerful and festive. They only charged me twelve dollars and I thanked them and wept as I paid. As I went to leave, the woman asked me if she could hug me and she came around the counter and took me in her arms and said, "God Bless you sweetie, and your little Calvin too...." It made me feel so good and so sad at the same time. I cried all the way to the cemetery and only stayed long enough to put Calvin's balloon and flowers down and to wish him a Happy Birthday. How I wish he was here as we celebrate Georgia's first birthday tomorrow....
Yup, I've got it. I'm sick as hell and it hit me out of nowhere. I woke up feeling fine yesterday but with a headache and by three o'clock yesterday afternoon my chest was burning and I started coughing. Today when I got up, I noticed my lungs were feeling horribly tight and I was having trouble breathing so I went to the walk in clinic. Within minutes I had a surgical mask slapped on my face and I was being ushered into the washroom to wash my hands and then disinfect them with isogel. We had been on the waiting list to get vaccinated because I'm in the high risk group being in my thirties and having asthma but the doctor's office never called. So I've got it, I'm pretty sure Shane and the kids have both had it, at least Lorelei because she had three days of fever and now she's got the cough. Nevertheless, the walk in clinic had me call the house and get Shane to bring the girls down to get them vaccinated right away. So they've had their shots, I'm currently on Tamiflu and antibiotics plus a couple of inhalers and we're still waiting to get our shots. It's horrible, I feel awful right now. I'm exhausted and hot and coughing like crazy. Get your vaccinations, seriously, you don't want this flu.
As Calvin and Georgia's birthday approaches, I have thought to myself over the last couple of weeks that I should write his story. I know many of the babylost mamas who read my blog know the basics of what happened to my son but there is something inside me telling me to get it all out, to write it down. It seems though that as much as I want to write about my experience with Calvin, from his diagnosis during my pregnancy to his birth, surgery and death that there is something holding me back. I'm pretty sure that something is fear. I have spent so much of the last year trying to get over the pain, the horror and the guilt I have felt in regards to Calvin's death that I am afraid of revisiting those feelings and bringing up all the pain I've been trying desperately to keep at bay. Maybe I need to. Maybe putting down our experience will help me get out some of the anguish I've been holding inside. Maybe it will help me to come to terms with some of the anger and incredible hurt I am harbouring towards myself and my body's failure to put my child together properly. I'm really scared to go there again. I'm afraid it will be like ripping off the scab on a wound that's slowly healing and that the pain will be raw and fresh as the day he died. It's very unlike me to be at a loss for words like I have been lately. There is so much going on in my head right now, it's hard to find a place to start with things. I have so many emotions about my daughter's first birthday and the guilt I feel about celebrating her life and not his. I also feel guilt about shadowing her special milestones with my grief and don't want her life to be lived in the aftermath of Calvin's death. It's so unfair. To Georgia, to Calvin and to me, Shane and Lorelei. It's such a conundrum, the do I or don't I, should I or shouldn't I. I'm clearly messed up and not sure of myself right now.
Today as I read Lea's letter to Nicholas, I could completely relate to the pain she is going through as Nicholas's angel date approaches. I'm there too. Right beside her, just a few days behind and the feeling is one of dread. How do you mark the one year anniversary of your baby's death? How do you mark the day and fill it with meaning when it hurts so much to even think that it's been a year already? I've been so preoccupied with the thought of Calvin's angel day that I almost recoiled in horror the other day realizing my girl is turning one and I have no idea where the last year has gone. While Georgia holds a particularly special bit of my love because of the circumstances of her birth and what she has lived in as a result, I realized with guilt that much of her first year was spent with me in a complete haze. I'm sure the grief has blocked out alot of my memory from her early days but it's been my numbing out with medication to escape the pain of losing Calvin that's cost me much of the wonder of my beautiful girl's first year. I'm sad about it. Sad for her that I didn't take as many pictures as I should have, didn't write her milestones down in her babybook, didn't spend as much carefree happy time with her that Lorelei got in her first year. Much of Georgia's first months were spent on autopilot, getting up to feed her, change her, hold her and put her down to sleep, repeat. I don't know how I got out of bed some days to do it and to be honest, there were days I didn't want to. I wanted to stay in bed and cry and mourn and sleep and think about Calvin without any distractions but I couldn't. But at the same time, she was my reason for carrying on with things and I am so grateful to have her to fill my arms with her gorgeous baby chub while I was so horribly grief stricken. I want desperately to give her more of myself in the next year, to not be so preoccupied with thoughts of Calvin and his death but I need to honour my son as well. It's so difficult to find a balance when you lose one of two babies.
I may or may not post his story in the coming days. I'm finding it so hard just to acknowledge the year mark that I don't know if I can dredge up those feelings of loss as if they were fresh again. I want to do it for him, so that the women I've come to know and love can read his story and understand what happened to him. I just don't know if I have it in me to do it. I do have so much admiration for those of you that have written down your baby's stories, had the courage to post their pictures after they have passed away, and have reached out to help others in the process by doing sweet things like making momentos or keepsakes for other mothers suffering in loss. I'm so self centred in my own grief I haven't found it in me to do it, although I would like to do something for the other mothers very much. I would also like to find the courage to post Calvin's pictures, after surgery and as he lay dying in our arms. I am afraid to now knowing that some of the family is reading my blog and I don't want them to be hurt by his image. I'm just so damn stuck right now and it's making me even more upset that I can't seem to find my way about this milestone in my children's lives. I need a hug and a cup of courage and an ounce or two of strength to get through these coming days so that I may both celebrate the births of my twins one year ago and that I mark a year of mourning for the loss of my son.
I've been thinking alot lately about information, medical advances, and new technology. I have wondered for awhile now what would have happened had we not known about Calvin's heart defect. I know for certain he probably would have died within his first year of life without surgical intervention but I wonder if it would have bought me more time with my son. Although I have a great deal of admiration for medical advances and knowledge, I wonder if there is such a thing as knowing too much. If we had wound the clock back eighty years and I was giving birth to the twins not knowing that our son's little heart wasn't formed properly, would that lack of knowledge have given me more unhurried time? Certainly children died more frequently than they do today, it was almost a given even eighty years ago that at least one child in the family wouldn't live past age five. Back then it was quietly accepted that sometimes mothers and children didn't survive even the birthing process, never mind being born with something as devastating as a malformed heart. I wonder if I lived in that day and age if I would have quietly accepted Calvin's death as one of those things that happens and been able to move on better with my life. I doubt if Calvin had been born fifty years ago that they would have even been able to diagnose his heart defect let alone operate on it when he was just three days old. I wonder what difference it would have made in my pregnancy, to have been blissfully unaware that my baby suffered from a life threatening condition. Maybe I would have been worried about whether or not I would have survived birthing the twins, or whether or not we would be able to feed and support two babies at once. I do know that I miss being unaware. I miss that blissful lack of knowledge that you have when you've never had problems with pregnancy or birth. I miss the innocence of believing that science can fix whatever problem is thrown it's way or that in this day and age, babies don't die anymore. I am all too aware of problems, complications, medical terminology, congenital conditions and statistics. I am all too aware of how it feels to hold your child in fear knowing that in a few hours, his chest will be cut open and that he might die. I am all too aware of the crushing pain that comes from holding your child as he turns blue, then black from cyanosis and from knowing that there is no prayer or hope or wish that can save him. I wish more than anything I lived in the state of blissful ignorance where I didn't always have in my mind the memory of my son on life support or in his tiny casket waiting to be buried.
If I could only have a little of that back, maybe I wouldn't have been so spent with trying, so crushed from all of our past losses that I would have been able to hold my chin up and say, "Let's try again". If I wasn't aware of all the problems being pregnant caused me and all the problems that could affect my unborn children than maybe I could have accepted burying one or two of them along the way to creating a family of epic proportion. Maybe, then again, maybe not. The fact is that I have been affected with too much knowledge, too many things that could happen, too much fear to try again and for that I am incredibly sad. Not only did I lose my son and the other babies I miscarried on the way to creating our family but I lost my hope. I lost the faith in my body to do it's job properly, I lost the naivety that comes with the belief that you get pregnant, you have a baby and you live happily ever after. It didn't happen that way for us and although I have learned in the last months of living without my son that we are far from being the only people that have lived through losing a child, it doesn't make it easier knowing that babies do die and that it does happen to other people too. It just shouldn't happen to anyone. The only real difference between now and eighty years ago is that it doesn't happen as often because they do have the tools and the knowledge to diagnose and cure. Maybe because of that sense of security, we've bubbled ourselves into believing that we are safe from something that was at one point common. Maybe it's the fear of talking about what really does happen sometimes that keeps us blissfully unawares until it happens to us. More than anything, I wish I was still wrapped in that bubble safe in the belief that it wouldn't happen to me.
I have decided to write about my feelings following the death of my only son in November 2008. I'm learning that grief is a process with good days and bad, a lonely road with new beginnings and unavoidable endings. It is my hope that through writing I can come to peace with what has happened to us and our beautiful boy.