Remember when?

Most people I know like to speak about the past, reminisce, build nostalgia. Every now and then I do the same as it relates to Patrick and Maggie. Remember when things were good? Less awful? I can be sent down memory lane at seemingly nothing, or more in-your-face reminders. For example, we drove past an RV sales location and I found our old shopping list that we started when we learned we were having twins. 

In the summer we camped with my family and then on our own for about a week. Our tent, which is marketed to sleep about 8 people, barely fits the three of us. To be fair, we sleep on a large, queen sized inflatable mattress... but still, we were squished. We went for a walk one day and started to talk, "how will we camp next summer, with three young children?" EllaGrace would be just three and the twins, about 7 months. Lee's answer, as a terrified Dad-of-twins-to-be, said we would no longer camp, or leave the house. We laughed, I reminded him that he would adjust. We agreed that in the long run we would want a tent trailer, something to fit everyone comfortably for sleep and a safe place to hide when it's raining. Not really roughing it, but hey, with three young little people in our family, we were okay with it! 

The day we found out we were having twins, I was thrilled. Ecstatic. I have wanted twins forever. Just ask my cousin - we named our children when we were about 11 years old (my list included boy/girl twins). When I told Lee, he was immediately terrified and I slowly followed. We talked about sleepless nights, strollers, carseats, vehicles, leaving the house, parental leave, daycare for EllaGrace... with twins it was all so much more complicated. My biggest concerns were how to get the second baby to the breast and latched without dropping the first and how I would meet the needs of all three of my children in the way that I felt I had been able to with EllaGrace up to that point. On top of that, we no longer fit into either of our vehicles. And we needed a vehicle wherein it would be easy to manage all three children on my own. We made a list - it was not long, but it was certainly expensive. We even went to look at one van. I maintained that I did not want to be a van-driving parent, but it was so practical given the challenges I was anticipating. If only I knew that I would no longer need a van at 25 weeks, I never would have complained. I wish I needed a van. 

In fact, I wish I was still complaining about the daily appearance of new stretch marks, water retention, possibility of medical interventions in birth,... all those things that I was negative about. 

I think to myself often, "Remember when we were excited?" I had no idea that my pregnancy could go so wrong. I did not even know that one could have ruptured membranes early in a pregnancy. I never prepared myself to be a statistical outlier, having ruptured membranes and no surviving children after such a strong start to the pregnancy. I never, never thought that I would have this level of life experience before I turned 30.

O Christmas Grief

Today we ventured out in the -20c weather in search of our Christmas tree. Our daughter picked a tree, had a candy cane and did a wonderfully youthful job of decorating our tree. We also had a wood stove installed just yesterday which allowed for the Christmas tree decorating to be just picture-perfect. We danced to the carols playing in the background between choosing decorations. Afterwards we all cuddled under a Christmas blanket and read Christmas stories, with rosy cheeks from the warmth of the fire, no less. And certainly, moments of the whole process were wonderful. 

But, if someone were to look a little closer, they might have seen the photographs of two babies whose colouring is slightly off; those are my dead children. Their images watched as we prepared for a season of love, joy and celebration - and as much as I believe that, right now all I have to say to such a notion is "What a joke." If that same person looked closer still they would have seen the tears brimming in my eyes, on and off, all day. All week. Actually, for the last 7 weeks and 2 days. 

Now, late at night, my living daughter and husband tucked into bed, I have a moment of quiet by the tree and the fire. And I cry. There is not any particular thought triggered by the tree. I am not crying because this is the first Christmas tree, or Christmas, or fireside bedtime story that they are missing; that's simply icing on the cake. I am crying because deep in my body, I still have that ache and longing. I am crying for Patrick and I am crying for Maggie. They should be in my body, still growing, kicking and causing general physical discomfort. At the very least, we should be planning the logistics of a NICU Christmas. Instead, I am wondering if the engraved snowflake ornaments I ordered with each of their names will arrive before Christmas. I just miss them. I miss the idea of them. I miss anticipating them. I miss seeing them. I miss the bloody incubator in which Patrick lived for four days... I cuddled that incubator and sang to it. Now, I say goodnight to ashes and snuggled their stuffies. My days are so occupied that I do not have time to sit and cry. I spend them avoiding people, anticipating difficult situations and noticing my emotional reaction to a million things. The whole world, literally, is a trigger: babies' slippers, car rides, other people, fun places that EllaGrace and I go.... 

This Christmas we began the tradition of having EllaGrace fill a bag of toys to share with other children who may be less fortunate then herself. We were to deliver them at a community centre which houses programs which she and I attend. I noticed genuine anxiety as I approached the building my car, my heart rate and butterflies in particular. EllaGrace did a wonderful job of donating her toys and then asked me if we were to stay and play. I began to cry as I tried to explain to her that I am not ready to spend time here. I am not sure what it is about the centre in particular that I find upsetting. I was pregnant the last time we were there? Lee and I spent time trying to plan how I would go there with three children? I was supposed to do prenatal yoga there? Perhaps a trigger for many thoughts, but I know it is upsetting and I also know that it is upsetting that my own grief is impacting EllaGrace's activities. 

I am finding grief a fascinating process - awful, obviously - but my clinician side tries to assess and analyze my behaviours and thoughts. In particular as of late, I have noticed that I am not crying much. I often tear up - Patrick's health card arrived on Wednesday - but after the tears arrived I changed my activity and did not cry. I am sure that if I had sat down holding it and contemplating it, I could have had a long cry but this is not how I have been responding to triggers. Am I in denial? Is it avoidance? Is it 'normal' - even though there is no wrong way to do it? Am I accepting their deaths and moving on? (The latter would have to be subconscious because as I write that I think, God, I hope not. Not ready for that). 

Regardless of how much I cry, I continue to avoid (sometimes really hard, sometimes just dissuaded by other barriers) certain social situations and people. My days and nights continue to be filled with thought and dreams relating to Patrick and Maggie's deaths. Yet, I continue to conduct my days with my family with relative normalcy. Then, late at night, I blog and cry while they sleep.... 

Torn

I am sitting in my living room while my eldest daughter, EllaGrace, sleeps. I am struck by how many things can go through one's mind at once. I set out to write about feeling torn, always, between: life and death, happiness and sadness, appreciation and anger, excitement and fear, peace and torment... But I wrote my first line and was reminded of another dilemma I will now face - how will I answer the question "how many children do you have?" - torn between privacy and truth?

EllaGrace is my eldest daughter. She is my firstborn. I used to call her 'my daughter', and cognitively I know this is still true. However, I used to use this language as a title, Daughter, my one and only. The truth is, she is no longer my only daughter. I knew my second born child, a daughter, for only a short time outside of my womb, but she was real. It seems as though I negate her existence when I call EllaGrace 'Daughter' now. On the other hand, writing 'while my eldest daughter sleeps' seems to suggest that my second one does not, as if she is awake, with me. I wish so much that this was the case. Some how, once again, language fails me or tricks me. Maggie's death has taken with it the use of the word daughter... perhaps not forever.

If I cannot sort out how to use the word daughter, then likely the answer to outsiders' questions "how many children do you have?" or "do you have children?" will continue to evade me. Maggie and Patrick were so small, innocent and their lives so short that the only word with which I can describe the experience is intimate (outside of horrific, awful, heart wrenching, etc.). That being said, although they died 36 and 32 days ago, I continue to attempt to maintain that intimacy. Few people knew them, have seen them or their images and the story of their lives and deaths is mine (and Lee's) story to share. It is intimate. Yet, I am the mother of three beautiful children. Sadly only one is living. That is the true answer and I do not want to exclude Maggie or Patrick from the answer because their lives were so precious and have had such an impact on me/us. I am torn between privacy and truth.

As I am writing this, as I began to say, I am sitting in a quiet room. there is sun, blue skies and snow outside but I am warm and comfortable. EllaGrace is sleeping. We have just been shopping where she chose one, very large and very pink Christmas ball ornament which we have hung in her bedroom window. We are preparing to decorate for the holiday season. And I am listening to peaceful music. It is a peaceful moment. The holiday season brings excitement and with it family and joy.

Imagine if you will, peeling a layer away from that image - happy, peaceful - the music that I am listening to is the music playlist compiled for Maggie and Patrick's goodbye. I am listening to "I dreamed I held you in my arms, when I awoke dear, I was mistaken, and I hung my head down and cried..." - who knew that "You Are My Sunshine" could be so accurate? Many of these songs are ones that I have sung to EllaGrace. They are now songs that I connect to all my children, but in the worst and perhaps best way possible. I can still hold EllaGrace and sing to her in order to offer her comfort, distraction and connections. I sang to and played the music for Maggie and Patrick in the last moments of their bodies' existence. I know that with the music, they also felt my love, saw my tears drop on the floor around their casket and heard my pleas for forgiveness. It is so important for me that they know how I mourn for them and how much I love them. I know that I did my best in those moments so the music brings me that peace. And yet, this music brings me back to their goodbye - I can walk myself through the entire, awful experience from seeing the casket brought into the space, others' tears, and the casket being taken away. I can feel the pressure that was building inside me as I waited to be alone with Lee so that I could fall to the floor and wail. Scream for them. Try to get the inner torment out although it will never be completely soothed.

The fascinating thing about the human experience though, is that we can experience opposing emotions. My joy in EllaGrace and planning Christmas are real. My appreciation for having carried Maggie and Patrick as long as I did and having the moments and days that I had with them is entirely genuine. When I laugh with my husband over dinner or dishes, it is a real laugh. But, I also fear a first Christmas without Maggie and Patrick and feel completely saddened that they will not be here with us. I am very angry that infection set in so early and regret that I did not have more time with Maggie and Patrick and that I did not examine and memorize every inch of their bodies. I never thought to look at their bums - and this may seem silly to others, but the truth is we take for granted diaper changes and bath times... I just imagine how tiny and perfect their bums would have been! And that fills be me with happiness and heartache, conflicting experiences, once again.

For now, I will just listen to the music...

"And you should always know
Wherever you may go
No matter where you are
I never will be far away

Goodnight, my angel
Now it's time to sleep "

A Double Whammy

Today is a double whammy: it is both a Thursday and the 28th. Thursdays are the day by which my pregnancy weeks were being counted. I am meant to be 30 weeks pregnant today. And it is the 28th. It was the 28th of October when Patrick died. When better to try to resume blogging than a delightfully emotion-laden day like this?

I keep thinking about being 30 weeks pregnant. I would probably not have been able to even reach the laptop upon which I write this very minute due to a huge belly. But, I would still be feeling Patrick and Maggie move around. Patrick had his head to my right side and bum and feet to the left and he often stretched out. I can imagine how much more uncomfortable that would have been as he grew bigger and stronger. And my Maggie, who was all squished up, her bum sitting right above my cervix. Her movement was so limited that in my last weeks of pregnancy all that I felt was a light wiggle very low in my abdomen, as though she was trying to shimmy her body around. At 30 weeks I would have been able to see much of their movements too.

Most important of all, if I had lasted until 30 weeks gestation, the odds of survival for both Patrick and Maggie would have been significantly improved. I would have had all the reason to hold on to hope by this point. They would have needed NICU of course, but their stories there would have been less tumultuous.

I ask the universe this: why? Why could I not have avoided infection for 5 more weeks? I had already done so for 10 and I would have been happy to remain on bed rest growing Maggie and Patrick. Why have infection set in at 25 weeks? I have done my research and heard the stories, miracles/good luck happen in situations like mine, so why didn't that happen for me? Why is it that I am sitting here on a maternity leave with no children to hold? My arms are empty and my heart broken. Five weeks would have felt like no time at all, in fact, it seems as though it was only a couple of days ago that I woke up shaking and went into labour. And it seems like only moments ago that I had hope and held my children.... I was not asking for much then, just more time.... now I have all the time in the world to remember them and try to move forward but truly I would prefer that time freeze.

As I mentioned above, today is not only the day that I am meant to be 30 weeks pregnant. It also marks one month since Patrick died. I think about him every day. I picture his tiny, knobby knees and his perfect nose. I picture his blonde hair. I can still see his tiny tongue suckling on the breathing tube. Even his tongue was beautiful and perfect. I can remember how he moved. But I can also remember how much his movement changed when he began to experience pain; he did not rest, his long, thin arm waving about. And his tiny little face, beneath tape and tubes, could be seen grimacing and crying. I never heard him cry but I did see it - and I thought that was heartbreaking.... but holding him while he died and missing him was god-awful as well.

One month ago today I woke up with fear. A doctor had told us the night before that Patrick had severe bleeding in his brain. We woke up and went directly to the NICU to find his specialist. The information we gained was bad. But the doctor, like us, clung to hope and suggested we wait for the latest results and manage his pain. I am devastated to recall the moment she ran into my hospital room and explained that it was much worse: that there was more bleeding in more places. My tiny son, such a fighter, was suffering. So, one month ago, Lee and I decided for the second time in four days, to let one of our children die, rather than prolonging the inevitable. We phoned our families and went to Patrick.

I hate to relive the 28th and the 24th. I hate to think of Maggie and Patrick dead; their tiny ashes now in a hand-crafted urn by a dear friend in my bedroom. But, the comfort of thinking of those days is that at least they were still alive then. On each of those days I had some hope and I like that part. The hardest part is remembering that those were also the days that hope for them was taken away.

People often say to me that they can only imagine the pain of losing two children. I have thought about this some, and here is my response: don't. The pain, loss, sadness that I feel is all-encompassing of my emotions, energy and physical self. Patrick and Maggie are the last thing I think of at night, the first in the morning and are often in my dreams. My holidays are planned through a process of imagining that it was supposed to be different - a pregnant Christmas. a NICU Christmas - and then finding a way to include Patrick and Maggie in the celebration. I sleep with each of their stuffed animals in my arms or on my chest; the very places I would have held them if they had survived. When I cry I can feel the sorrow coming in waves from my core. It is awful. So, please, don't imagine it. Do not try. Not because you can't possibly imagine (indeed, perhaps you can), but it is simply too distressing of a thought process. Do not picture losing your child (real or imagined), do not picture their death, or funeral, or your own emotions afterwards. Just know that it is awful and appreciate that your children and family are with you still.

Our Babies' Goodbye

I want to write this before I forget. I am listening to the playlist that was playing at the small gathering that we had to celebrate and say goodbye to our children, Maggie and Patrick. Dixie Chicks singing "Sweet dreams, little man. My love will fly to you each night on angel's wings." I am not religious, but I hope that my love finds its way to both Maggie and Patrick each day and night. I could not miss them, or long to hold them, more than I do. 

On Monday November 4th, just one week after Patrick died, we gathered with family. It was not a funeral or a service, but it was a goodbye. Our intention in planning it was to have one last opportunity to parent Maggie and Patrick. To be present during their cremation, to offer them comfort and love in the last piece of their passing. 

Many people talk about babies who have died as 'angels' or as 'sleeping'. We don't necessarily use this language, but we had treated each of their deaths as a quiet time. As each of our children died in my arms I/we sang our family's lullaby. With that in  mind, we first decided that we would read to them before singing them to sleep. We would have done the same for Maggie and Patrick and this was our last chance to do so. We read "I Love you Through and Through" and "Love you Forever" to them that day. We also played music, the vast majority of which were lullabies: Brahm's Lullaby, Twinkle, Twinkle, You are my Sunshine. We also included some songs which spoke to our love and loss - messages we wanted them to hear. 

We also wanted them to know us, our family, the lives we had planned for them. I printed photographs of us during the pregnancy, our extended families and of EllaGrace. We wrote on each of the photograph, telling the babies about how much we loved them and were excited to meet them, who they would have played with and what life might have been like for them. Then we wrote each child a long letter, reassuring them that we could never forget the precious few moments or days that we had with them and that we will love them and mourn for them forever. Writing this, although it was the best solution I could find, my heartbreaks because a letter to an infant is just so insufficient. I wanted to give them so much more, daily representations of my love as their mother in the currency of snuggles, playtimes, giggles and kisses. 

Outside of these plans, we brought photographs of the babies, prints of their hands and feet, stuffed animals which belonged to them so that others could get to know them as much as possible. 

Planning and imagining the goodbye for one's own children, in my experience, cannot truly prepare you for the experience. We entered the chapel, which is above the crematorium. There, in the centre of the room, was a small white rectangular box. It could not have been more than two feet in length and was quite thin. It stood alone on the metal frame accustomed to carrying much larger caskets. It was covered in a soft, felt-like fabric - much more suitable for babies. The moment I saw that box my legs buckled and I believe in that moment I felt my heart be ripped from my chest and my lungs collapse - perhaps my whole self and soul. I can never be the same again, my identify and my everything has changed since losing children and the moment I saw their casket - alone in a big room and world. I could not move, I just starred at that small box, which they share. I remember weeping and repeating "no, no, no... please.... no, no".  After all of it, I could not believe I was in that room, facing that small casket and another awful day. I will never be able to describe the all encompassing grief, fear and devastation that I experienced like a wall of bricks in that moment. Recalling the moment is nearly as painful, and finally my tears are flowing again, after days of avoiding it. Will my tears ever stop? 

Some how I found my physical strength and began to arrange the props we had brought with us. I laid out the photographs and letters for Maggie and Patrick on top of their casket. I stroked the casket, as though they could have felt my touch once more... I spoke to them. I can only wish that they heard me that day. 

The goodbye seems to have been an appreciated time by my family. They also said their goodbyes to Maggie and Patrick. If there was a part of them that ended that day, then they must know that the entire chapel was filled with love for them - not just my own, though I know it could have filled the space without any help. We listened to music and family members looked at the photographs - either a reminder of the short moments that they met the babies, or a first introduction. EllaGrace enjoyed handing out Kleenexes and playing with toys. She said a short goodbye to Maggie and Patrick's casket with me and blew them one single, sweet kiss. She was their big sister - is? - and she would have been so wonderful in that role. It is not just a loss for me or Lee, but it is a loss for our family, the one we were planning with EllaGrace. I read the stories as planned. 

And then the casket was removed.... my last moment of being with their bodies, a physical, real representation of my children. It was not wheeled away, or carried by pallbearers, but picked up in the arms of a single funeral home employee because it was small and light; it held the bodies of two, small, entirely loved infants. My babies. Somehow each time that someone takes them away from me - when I gave up the body of each of them after holding them, and this experience - it feels like a new, final, awful goodbye. And as I think of those moments I can feel my body tremble, I feel my heartbreak and my chest hurt and know that I am inconsolable - again. Grief is as much physical as it is emotional.. I feel them, I feel my loss...

After that I sat and stared. I stared at the metal carrier that had held the casket moments or minutes before. I waited for everyone to leave so that I could crumple to the floor beneath me, curl up, weep and never leave. I wish that I was still there now. I wish I could rewind time. Luckily, cousins and my husband distracted me enough that it didn't happen exactly like that. Now I just have to live in the present... feel the loss and find a way to move forward from something that I have no desire to leave behind. 

Change in Blog and a Change in Me

I have decided to try to start blogging again. I guess the dismal prognosis part was accurate, but I have so many lost hopes, tears, and memories to process. I think that some posts - like today as an example - my writing will be scattered, much like my own thinking. I have so many thoughts running through my mind...

Most of all, I want to acknowledge that Patrick's one week passed on Monday. I am days behind recognizing this, but the universe knows that I thought of him all day on Monday. Truth be told, I think of Maggie and Patrick all day, everyday. I keep thinking about watching him. It's amazing how much I can cherish and recall the tiniest of things: the day he and Maggie were born, while we held Maggie's body in our arms weeping, I put my hand in his isolette to touch him for the first time and he gripped my finger. I am terrified that I will forget how that felt on my skin and in my grieving heart. Or when he was one and two days old and we could watch him sleep and move his arms and legs around, so congruent with how he had felt inside me. He was so tiny, but he had the nose of a little person already. And he had all his fingers and toes, and he could wiggle them. I am certain that he would have developed into a baby who looks like a little old person, and imagining that brings a small smile to my face. But it is usually followed by deep, deep heartache and grief. My word, they were both such wonderful, beautiful children.

As I approached viability in this pregnancy I became increasingly concerned about my breastmilk. I knew that I wanted to provide it for the babies but felt so uncertain I would be able to do so when they were in isolettes, untouchable, for the first months of their lives. So, as soon as I was able after delivering, I started pumping and trying to stimulate in order to provide for Patrick. I had the lactation consultant come in to see me several times. I sat beside Patrick in his isolette and spoke to him and imagined holding him, while I held the pump to my breasts and tried to get them to produce milk. Expressing colostrum was frustrating because it was so little, but it was enough for Patrick. One day I did not produce enough and they had to give him milk from the breastmilk bank. I worked harder. And when he was three days old I felt my milk coming in - I was so glad to be providing more milk, knowing that one small bottle could feed his tiny body for days. Cruelly, my milk came in fully the day that he died. It was the one thing that I felt I could do for my tiny son, the one thing that might have been within my power or control. And I succeeded. But I lost him anyways. The discomfort of having a large milk supply with no baby but lots of grief was difficult to manage - I wished it away. But now I have barely anything left and I am heartbroken... it's as though my children are farther and farther away from me as my body heals and returns to normal.

It's Been One Week

About a half an hour ago, it was exactly one week since my sweet Maggie died. The heartbreak and the intensity of the loss has not subsided in the least. I think of her tiny body and her sweet face and I weep. And I remember pieces of that time. I remember the physical feeling of delivering her. I remember screaming in panic and fear when she was born "Please. My baby. Please." - begging the doctors, the universe - someone for a miracle for my second born child. But I didn't get that miracle. My daughter died in my arms hours later. 
Now I sleep with the stuffed animal we gave her and stare at her pictures and weep. I think of the things we would have liked to do with her as she grew up. She looked like she would have been petite and maybe a bit shy. She would have had fun playing with EllaGrace - or maybe tired of what I'm sure would have been EllaGrace's bossy, big sister tendencies.

I'm so sorry Maggie... and I love you.... My Maggie...... 

Patrick's Story

Patrick, my first son, although born so early was doing surprisingly well. He responded to all treatments being administered. In fact, in his first days his oxygen levels were close to room air. But, par for course, his needs varied hour to hour as he adjusted to life outside the womb. Given Maggie's passing, I did not actually meet my little Patrick - about 800g - until later in the day. We placed Maggie in his isolette so we could have photos of our children together. The image of them together was heartbreaking - these are two children who were meant to grow up together. 

Patrick gave us hope. I touched him on the day he was born and he reached our and gripped my finger - one of those magical moments. He might be tiny, but he was clearly a little person. My littler person. I would fight tooth and nail for him. Over the following days I began expressing milk which he was given in small doses. We would watch him sleep or squirm around in the isolette. His movements were so easily linked to what I felt while I was pregnant. The nurses and doctors were always supportive and informative as we hoped for Patrick and grieved for Maggie. 

Routine scans at that point had been going well. His brain looked healthy, his lungs were responding well to treatments and although his heart had an open valve, he was being treated. 

On Wednesday morning the nurse and I noticed that Patrick was moving around more than usual, as though he was agitated. It was later discovered that his hemoglobin appeared to be low which the doctor explained may be a sign of internal bleeding in the brain. We sat on edge, watching his heart rate, oxygen, and blood pressure all change. He was given two transfusions and a platelet transfusion. Later that evening a doctor came to explain that severe bleeding could be seen on Patrick's brain. She explained that it was in both hemispheres and that this could affect speech, mobility and cognitive processing. Lee and I wept and spent the night discussing what our options may be for our dear Patrick. Dignity, comfort were paramount. 

The following morning, October 28th, we went to see Patrick. He was receiving increasing doses of narcotics to ease his irritability. We met with a specialist who explained that she had seen that there was grade 4 and grade 3/4 bleeds in his brain, as well as swelling in the surrounding ventricle. We discussed palliative care but agreed to reconvene once she had a full report about his ultrasound. Later that day that doctor came in and explained that he had actually had a second bleed, which had moved down into other areas of the brain as well as caused swelling so much as that the placement of his brain had shifted. She indicated that given his high heart rate she was uncertain that this was a reaction to discomfort and that he may not live through the night. 

We phoned my family members to come with EllaGrace. Patrick came out of his isolette and was cradled in my arms while he continued to received breathing support and pain medications. EllaGrace held his hand and kissed his head and talked to him. She gave him one of this toys. It was such an important moment for us as a family. She then left with my sister so that Lee and I would be alone with Patrick when medical interventions were removed. The moment of unhooking him, and loss of all hope and miracles, was an awful one. We sang him our goodnight song, and told him many of the same things we had told Maggie. He continued to breath on his own. He sucked on my finger lightly. I placed him against my skin to keep him warm. Given that he lived for so long on his own (30 minutes, perhaps), we allowed family in to see him. His grandparents, great aunt and aunt were there, surrounding him with love and tears as he exhaled his last breath in my arms. Patrick was then held and cried for by each person in the room. We wept and wished him well. He and Maggie are together again. Our family left, and after one more visit from Auntie Christie who gave him so much love and reassurance, we were left alone - parents and child - to say goodbye. We kissed him and gave him to a nurse, our last moments so precious. 

Now, we are left with nothing but blankets and photos of our daughter and son. We were a family of 5 for two hours and a family of four for four days. Now we are a family of three once again, but with broken hearts and memories that will be with us always. 

I weep for my children and my heart breaks for them both every moment of the day. 

Maggie's Story

Our sweet Maggie, named after her Nana Pom, was Baby A. She had had ruptured membranes since 15 weeks gestation. This meant that her lungs had very little opportunity to grow. Moreover, at our 24 week appointment we had decided not to have steroids, which help lung development, in hopes that the pregnancy would continue and that they would be more effective later in the pregnancy. This decision, although based on fair information at the time and unlikely to have changed the outcome, will be one that I dwell on for years to come, I am sure. 

Once I was stabilized we asked to see our children. It was at that time that a member of the Neonatal Intensive Care Unit (NICU) team informed us that both babies were still being tended to and that Maggie did not appear to be responding to their attempts. I was helped into a wheelchair and we were taken to the small table where Maggie was. The doctor quietly explained that they had administered several doses of medications to help her lungs but to no avail. She indicated that she was concerned that after two hours of attempts to save Maggie, that she would have sustained brain damage. We decided to end the doctors' attempts. Maggie was placed into my arms, nestled against my chest, where she died. I have never known such sorrow or heartache. She was wrapped up in a receiving blanket that we had purchased for her while I was pregnant and we gave her a small stuffed bunny toy. We spent quite a bit of time with her in my hospital room. She was held by her aunt Laleah and by her honourary aunt Christie. I sang her our goodnight song. I tried my hardest to memorize every inch of her body and the feel of her tiny body - about 400g - against my own. I knew at that moment that I would never be the same person again, nor would our family every be what it was prior to such a loss. 

I have no words to explain how I feel when I think of my Maggie. I physically ache through my body for her. I will love her forever.

The Beginning of the End: October 24th 2013

I am devastated to be writing this post. But, here is my account of the worst time of my life. 

At about 4:20 a.m. on Thursday October 24th 2013 I awoke my in cousins home shivering. I had had the shivers once before during this pregnancy. But when I struggled to go to the bathroom and really struggled to get warm, despite having put on several layers I became worried. I took my temperature and it was normal. I decided I needed to wake my sister in order to go to the hospital. Yet another orange flag for me, I struggled to be able to go wake her. I did not want to call for help because my daughter and my cousin's daughter were both sleeping. 

Eventually my sister and my cousin were both with me. My temperature had risen slightly and I began to have back pain. We arranged for an Aunt to take my sister and I to the hospital. The shivers would not stop, nor would the back pain which was migrating to my hips and legs. 

I was admitted at triage by 5:30 and shortly thereafter my temperature had reached 40 degrees. My pain was coming in waves - likely contractions - but the back and leg pain persisted. I informed the team that I did not have steroids on board for the babies. The nurse and my sister noticed that I had developed black eyes and that my pain was worsening. A doctor checked my cervix and indicated that it was only open "a finger tip". My pain, contractions and illness continued. In a two hour time span I dilated completely and was preparing to deliver Baby A. 

Lee, luckily, made it to Ottawa in time to support me through the hardest part of my labour and delivery. I was hooked up to fluids and magnesium for the babies' brains. We were told that I could not have steroids because it would risk my own health, which was obviously quite poor at the time. All of a sudden I felt something, Baby A, so small, was coming out without much pushing on my part at all. A beautiful baby girl, Margaret Laleah Lynn (Maggie), entered this world at 07h45. She was taken away so quickly by the doctors that no one was actually able to confirm if she was a girl or boy. 

Our hope had been to have a delayed interval delivery. I was exactly 25 weeks pregnant and we knew this meant grim outcomes for our Maggie but also for Baby B. The OB supported this attempt. However, she noted that as my contractions continued, Baby B's heart was dipping dangerously low. She indicated that the Baby was telling us it was time. She broke my waters and I delivered a perfect baby boy, Patrick Lee Brian at 8:04 am. He was whisked away by the neonatal team just as quickly as Maggie had been. But we were told shortly thereafter that both babies were doing well.

The team then turned their focus to me. Having delivered the babies much of the pain and even the fever began to subside. They explained that this is common, as the infection is like an abscess that must be removed. However, upon further investigation it was discovered that I had an infection throughout my blood - sepsis. They explained that this was quite dangerous and Infectious Disease was consulted in order to treat me appropriately. Over the following days the specific infection was identified. I was on an IV for five days while in the hospital and have been sent home with a 2 week order for continued IV antibiotics. It has been explained that if we had come to the hospital any later I might have ended up in the ICU or worse. Evidently, I was quite sick. And in all honesty, while I know it does matter, in the grand scheme of things my own health has been the least of my concerns since that morning. 

No more Facebook Status updates, because I have no words that do justice to my experiences.

Sometimes I Play Pretend

Picture a beautiful fall day: the sky is blue, the leaves are turning on trees and crunching under your feet. My toddler walks ahead of me, commenting on all of the new fascinations of autumn in our small town. My husband walks just behind me, as though he is admiring his little family and I feel admired, loved, and lucky. And we both smile because we know our family is growing as we walk on that perfect day. I reach down and rub my big, round belly and send a quiet message of love to my unborn babies. I already love my family so much and I know that this is just going to bring more joy and laughter into our home. I picture putting up Hallowe'en decorations and getting ready for the first snowfall. Maybe we can decorate my belly before going Trick or Treating. I am reminded that I should start looking for warm things for the little babies who will arrive in the cold days of winter. What a beautiful life I have. I cannot ask for anything more than this. 

Reality sets back in: the walk from the car to the front door is over in 30 seconds. I consider myself lucky for having left the house that week. That precious moment with my family existed, but only for a moment. It was not nearly long enough. And, truth be told, it was too far from reality. I imagined my dream, my wish. If I am being totally frank, I do this often enough. On a walk to the bathroom when a friend is visiting I imagine that we are having a visit talking about how to paint the nursery or my birth plan and then smile at myself in the mirror, thrilled to be in the midst of a happy, healthy pregnancy. I have these short moments of transition in my bed rest world that allow for me to imagine away the truth. 

I reflected on this tendency recently with my midwife. In truth, I know that this pregnancy will end too soon for my children and that their fates, especially that of my beloved Baby A, are far from predictable. We spoke about milestones: 24, 26, 28 weeks. I shared with her that I have a vivid imagination. Prior to this pregnancy I loved imagining that I won the lottery. I would ask Lee to imagine with me. I would picture us showing our children the world, maintaining our life but without debt or worries. But since rupturing I have not thought of the lottery, I have my own personal lottery. I imagine maintaining my pregnancy until 34 weeks, to be precise, 33weeks and 6days: Christmas Day. Lots of folks will say that a birthday on Christmas is no fun for the individual who has to share 'his/her' day. But, in this situation, I cannot think of a more amazing gift than to have reached such a far point in a pregnancy. It would be my own little Christmas miracle. My midwife laughed with me, but it is nice to dream. 

Facebook status of the day: What are the chances of winning the lottery?

Hello Viability/Update IV

We made it. We made it to the day that doctors told me we would not. At 24 weeks babies are considered to be viable. But, what does that mean really? Where are we now that we are on this side of viability? 

So much stress and fear has gone into the time spent getting to this point. But, as I have said before, we are not 'there' yet. 26, 28, 30 weeks are all of our upcoming benchmarks. And after seeing our MFM specialist as well as a Neonatologist, we have been asked to begin making some really difficult decisions. For example, do we want to do delayed interval delivery (potentially sacrificing Baby A for the long term benefit of the healthier, Baby B) and if one or both of the babies arrive, do we want to see them resuscitated or to be given palliative care. 

I do not know how one begins to make these decisions. My entire basis for refusing termination was to bank on hope and mother nature. If I did not offer resuscitation, then have I not given up hope and forgone the fight for the baby/babies? And, to pick one baby over another based on statistics? How cruel. And, how cruel to ask a mother to decide. 

We are trying to take into consideration some logical information in making these decisions: A pPROM baby at 24 weeks is not the same as a healthy baby at 24 weeks. Chances of survival without complications are lower. On the other hand, the NICU staff are happy to attempt resuscitation if we so choose. 

In the mean time, we are also trying to decide when to take steroids. It will help both babies, but works best within the first week after which the positive effects start to wear off. Many women have them administered at 24 weeks, but our doctor pointed out that if we are not confident we would take all measures to save the babies at this stage, that it might be more helpful until we reach that point. It is such a gamble and there continues to be no predictability in terms of the end of the pregnancy or the outcome for either child. 

Facebook status of the day: Please mother nature, give us more time so these decisions are unnecessary
 

Overwhelmed?

The welcome distraction of Thanksgiving is over: back to the ol' grind. It was so nice to be surrounded by family, laughter and storytelling that did not relate to my pregnancy. By the end of the weekend I was exhausted, though who knows why since my routine of sleep-shower-couch did not change much! 

Now we are a couple of days from Viability Day. As recently as last week I thought that I would have some level of release once having reached V-day. But, now I am doubtful. As I have written before, that finish line just keeps moving. Yes, viability is better than having doctors say they can do nothing. On the other hand, when I look at others' stories of pPROM it seems that 26 weeks is proper viability and really, 28 and 30 weeks are where you start to have some proper luck. That's one month plus. The road never seems to end. 

In the mean time, we are in the ethical dilemma/Sophie's choice boat. If I went into labour the professionals would recommend delivering Baby A vaginally in order to provide a chance for Baby B to stay in utero for as long as possible. But, if we wanted to give Baby A a chance at life, we would need to request a c-section. I am confident that as the pregnancy progresses, the more likely I would be to make the decision to have the c-section. But, until we get to a point where the chance of survival is pretty high, how does one make that decision? After all this time on the couch, begging the universe and having others do the same, how do I give up on Baby A? How do I choose A over B? But, how can I risk having to bury two children? It is such a crazy thought process and decision to make. I loath the moments it crosses my mind. 

Alas, I cannot spend all of my time dwelling on ethical dilemmas and the like. I am now in the throws of yet another difficult, heartbreaking change. We made the decision that I should relocate to Ottawa so that I am closer to a hospital. I have only two more sleeps at home. Then I leave behind my young daughter and husband - the people that keep me going at the end of the day - in an effort to make the best decision that we can for the babies inside me. It brings tears to my eyes to think of not seeing my daughter regularly. I have been away from her for about 5 days before but this is indefinite. In fact, the longer I am away, the better it is for the babies. I will miss out on her funny stories and faces, seeing how she changes and grows in the span of one night, her snuggles and kisses,.... it does not even sound bearable. And my husband... I have lived separately from him before but certainly not under these conditions. It is my late-night conversations with him that have helped me cope with so much of this pregnancy, and helped me to fall asleep at night. What will I do without that?  

Facebook status: I may cry less frequently, but it is not any easier. 

A Thanksgiving Post

Today I am celebrating what I can and being thankful for what I do have. For now, I have this pregnancy - something to celebrate and be thankful for. I am also thankful for my amazing friends and family who are helping to celebrate this pregnancy and this Thanksgiving Weekend. 

I do not know how long I will be pregnant and I do not know if either of these babies will get to survive past birth. For now, I thank the powers that be that I do have them now. With this in mind, we decided to do a little family photo session with those supporting me. Here are a few that we got. 
(Note: All photos taken by Beckie Kenrick, dear friend and photographer extraordinaire)

 The people that keep me going on a day to day basis: my husband and daughter.

My Darling Daughter - the person who can put a smile on my face on even the hardest days.

My Sister and I: she has completely changed her autumn's plans in order to support me and my family while I am on bed rest. She is such a rock star.

Another amazing friend pulled through: HB made these micro-preemie sized hats for the babies

My family: endless support and love - something to be truly thankful for

 

The Struggle to Stay Positive (Update 3)

Yesterday we attended our bi-weekly appointment with the specialist. Although far from "out of the woods" and still riddled with anxiety, I think we approached the appointment feeling pleased that we have reached 23 weeks. We have beaten the odds so far. We are preparing for my relocation to Ottawa so that I am closer to the hospital and went into the appointment equipped with questions about how to manage the pregnancy when/if I reach 24 weeks. 

When we were given the information from the ultrasound we noticed that the approximate weight disparity between the two babies was larger than it ever had been. In the past the difference was about 3 days, or 2-3 ounces. However, this time the difference was 5 ounces. Unsurprisingly, this disparity was raised by the specialist who indicated that it may be indicated of growth restriction for Baby A. Can this poor child not catch a break? What can I possibly do differently to help it?? The doctor acknowledged that this may be because of the difficulty to see the baby on ultrasound but that it required weekly monitoring to determine if this is a pattern or a fluke. 

The good news, is that Baby A has grown some. It has good flow from the cord, a good heartbeat, had some fluid in the bladder, a little pocket of fluid and had actually significantly changed positions and could be seen moving on the ultrasound. So, it is not all bad, but it sure is scary. That baby just does not need anything else going against it. Twin A is now breech, essentially sitting on my cervix with its head beside that of Twin B, who is still transverse. More than anything, I hope that stay in there for longer. Baby B continues to look healthy and happy. 

Unfortunately, when we began speaking about the future of the pregnancy the doctor we saw yesterday was quite negative. She spoke often about forfeiting Baby A to try to protect Baby B. She kept repeating that no matter when I deliver, Baby A has very poor prospects for survival and high likelihood of disability if it survives. She essentially dismissed the 24 week mark as any type of accomplishment and said that really 27 or 28 weeks would be a better baseline. I am acutely aware of this, as I have tried to articulate in previous posts. But having a doctor who does not acknowledge any level of success was so disheartening. 

She did say that she would recommend a course of steroids for the babies next week, contrary to our usual doctor's recommendation. She also indicated that if I relocate to be close to the hospital, they will send a nurse to my home a couple of times a week for monitoring and see me weekly at the hospital. I at least liked that. 

Facebook status of the day: So exhausted and so filled with love. Let's keep going, Little Peas.

A Shot at Optimism - or maybe just Distraction

Over the past two - three years I have completed my graduate degree and moved to a small town in which it has proved difficult for me to develop new friendships. However, in that same time frame I have met some incredible women. I believe that I am at that stage of life in which the friends that I have wonderful people and that I am certainly a better person because I have them in my life. I should not be surprised then, that these same women have been unfailingly supportive of me through this pregnancy. They show up with food, they talk about the 'outside world', they let me cuddle their own young children, they remind me how to laugh and they shed a tear with me sometimes, too. 

One such friend, BK, visited me yesterday. She came bearing food, interesting stories and then whisked away to have her hair done (insert my own enviousness of the latter here). She mentioned that she and her sister each follow my blog - which I had figured out about her since she always seems to know my latest update before even visiting (one more demonstration of her friendship fantastic-ness). She also noted that generally negative over-tone of my blog. And although I cannot say for sure, I do not think that she is the first friend or family member to say this. So, I brainstormed for a bit and came up with something that is less negative. 

If I had not ruptured, but for some reason had started to blog about my twin pregnancy, I would write a couple of things at this point (22w5d). 
- I am in belly button limbo. With my first pregnancy my belly button stretched out as I neared the end, but it never popped out. But last night my sister and I agreed that I no longer have an innie, but it is not quite an outie. The inner part is making it's way out, leading me to belly button limbo. My belly button, my sister says, is not longer a button! Identity crisis! 
- My pregnancy 'bump' is larger than I realize. I have loads of maternity clothes from friends. I often take out shirts or camisoles and think to myself that it just looks too big. I cannot imagine my friend ever having worn this, but it is certainly too big for me. I put one on today: it's almost too small. And if I was expecting a full term pregnancy, I would only be just past halfway! 
- My chest is so vein-covered. I know this happened last time, but I swear it is more, sooner, bigger this time around. I look like a water-way map of Canada when I wear a low-cut shirt.
- I am no expert, but my sister and I also measured my fundal height (size of belly) last night. Compared to the midwife's measurement a few weeks ago, I have expanded by about 5 cm. Eek! But, then I remember that I had been in a slouching position, not standing, when she checked. So, I assumed the same position: it only brought me down by about 1cm! I think I am measuring to the equivalent of a 35 week singleton pregnancy! No wonder I have heartburn. 

I am sure there is more, but these were the fun things that I could think of. There you go, BK! 

Facebook status of the day: Distracting self from the countdown - 9 days to viability 

A Scary Night

Disclaimer: this blog may have too much information for some readers.

Last night I noticed that I was bleeding while in the bathroom. I calmly (on the outside, freaking out on the inside) phoned my spouse and asked him to come home immediately. I paged an MFM Specialist and waited for a call back. In those few minutes that I sat on the couch alone I heard myself begging aloud. Please don't let this be it. Please, please, please don't be the end. Please...

The Specialist informed me that this may be the beginning of a late miscarriage and that I should attend the nearest hospital for confirmation and to determine if I can travel to the city hospital. Lee, my sister and I ensured that our hospital bag had everything we needed, including the little blankets and toys we'd purchased for the babies. We grabbed the camera and Lee and I headed to the hospital, trying to mentally and emotionally prepare ourselves for the end. Thanks to adrenaline, I was able to do all of this without crying much; I shook like a leaf, but got myself to the hospital and through triage. 

One of my biggest concerns was that we could be wasting time in a hospital which is not equipped to support me during a miscarriage, which I communicated to the nurse. As minutes passed while we sat in our small room, we calculated how far we could have been in relation to the High Risk clinic. Unfortunately the staff did not seem overly familiar with their own procedures. They had us wait for the ER doctor for about 30-40 minutes at which point he paged the OB - which could take another 40 minutes. Luckily, this doctor did acknowledge his own limits. Who does not appreciate some humble honesty? I strongly discouraged a digital examination to determine if my cervix (to try to avoid infection) was dilated and he respected this and said it would be better to have an OB who has experience in this if there is risk involved. 

Up to the OBS section of our small town hospital, we found ourselves the only patients. I do not mind that I did not have to hear others celebrate the safe arrivals of their full-term bundles of joy. They monitored babies' hearts and my bleeding and decided to keep me at the hospital for observation for the night. The bleeding seemed to generally subside over night, thankfully. The nurses were supportive throughout the ordeal and this morning it was decided that it was likely cervical bleeding for which nothing could be done. Before leaving one nurse assured me that I am never an inconvenience and that if I need some reassurance at any time during the pregnancy, I can attend the unit and have some monitoring done. 

Am now back home on bed rest hoping, praying... that this is not the end.

Facebook status of the day: Thankful, desperate for another day

Questioning Strength

Since beginning this blog friends, family, Facebook friends and acquaintances have praised the strength that I have had or demonstrated through this experience. I have challenged this once or twice with close friends and have otherwise expressed thanks. But last night, while I was not sleeping, I started wondering: what is strength? What is it that others are seeing in me that is identified as such? And really, why is strength important?

In one such discussion it was suggested that the mere fact that I have continued through with this, despite the odds against us, is a demonstration of strength. But I look back at the first days after Baby A ruptured - during which I was a complete basket case - and thinking about terminating the pregnancy. And in some sense, I guess I decided that I was not strong enough to make such a decisive decision. To open myself up to all that second guessing and uncertainty. Could I not argue that I have put my personal and family's well-being at risk because I was not strong enough to make that decision? Having said that, I do not doubt the decision to wait for mother-nature.

Looking outside the actual decision-making process, what is strength? I consider myself... surviving (not thriving!). I go day by day. My blog posts are largely filled with negativity, but more than anything, complete fear. Where is the strength in that?

I looked at some definitions of strength (physically strong) and emotional strength online. The Free Dictionary defines it as "emotional stability and resiliency, characterized by assertiveness, caring, coping, and stress-management skills" (http://medical-dictionary.thefreedictionary.com/emotional+strength). Maybe I have demonstrated this by researching pPROM, changing doctors, getting out of bed everyday despite the nightmare I am living,...? Maybe I am selling myself short, but that does not sound that strong. 

I have read on other women's experiences of a sense of failure: a failure to have carried a child to full term, a failure to be fertile, etc. I have never considered myself as a person who holds this level of ownership. I generally have accepted that bad things happen to all of us and that I can only to my best to face or overcome those obstacles. I did not do anything to cause my infertility. Nor did I cause this rupture. BUT, then I look at my refusal to consider myself as demonstrating strength and it begs the question: do I believe that I deserve praise? Maybe not, if I have self-blame. Or does the language of being strong for the babies and fighting for them inherently entail ownership that I simply do not want to have? I beg the universe to keep me pregnant, not myself. So, do I blame myself for what is going on and count on myself to prolong my pregnancy or do I just view this as a nightmare that me and my family have been thrown into and I am just along for the ride? Am I powerless? Where am I in all this?

I do not have the answers to these questions. Something new to ponder...

Facebook status of the day: I am only sure of two things: complete fear and love 

An (un)Milestone

I am 22 weeks pregnant today. That means I have continued for 7 weeks after rupturing. Is this a milestone? Something to celebrate? I do not know. Much like my previous posts, it does not seem to mean much to have made it to 22 weeks. I have beaten the odds, yes. I am still pregnant, yes. But, I am not far along enough to have a chance to have the children I am trying so hard to grow. I am too scared to allow myself to think that because I have been alright thus far, that I will continue. So, on this (un)milestone day, I ask that others that have the capacity for hope without the fear of jinxing, to send that hope/wish/prayer/positive thought (I will take anything!) to my babies today and in the coming weeks. 

In the mean time, without completely jinxing everything I hope, we have started to look at the October calendar. If I could make it to November, I would be past 26 weeks pregnant.... sometimes it looks not that far away, but then, it is. Anyways, we were looking at visitors, bed rest supports, etc. My Aunt, who has offered to request a leave from her work in order to support me/us (she's an amazing person, to say the least) and I discussed dates that she could visit. And it is in conversations like that in which time seems to fly - all the weekends are covered until the last one in October. We will get me moved to Ottawa/closer to the hospital sometime before then... crazy. It is so scary to try to plan ahead, but the little piece of me that I allow to hope gets excited that if we can just make it to the time we are planning for, then maybe, just maybe, these little peas have a chance. 

Facebook status of the day: What's a milestone anyway? Only time will tell.... 

I am a bed rest athlete

The notion of being on the wrong side of mercy has stuck with me since I first posted about it a couple of weeks ago. In fact, it had been on my mind so much that I forgot that I had posted about it before and began planning a blog about being on the 'wrong side of mercy'. Then I realized I had already done as much. 

I have seen other pPROM mothers identify the first week post-rupture as the worst one. And certainly that week was filled with shock and grief. I never want to go back there. But I am not sure that the 20 - 24 week stress is any easier; they are both the worst! I have had time to adjust to our new reality, but I have invested six weeks in getting this far. I am so much closer than I was all those weeks ago to viability, but I am still far enough away that if I went into labour I would have the same outcome. My spouse and I have both talked about the anxiety that we are each feeling and the conversation keeps happening, night after night. 

This got us thinking about the stressful nature of these weeks of gestation and we each found an athletically-based comparison most helpful to describe our current experience. I explained that it seems as though I am running a marathon in which the finish line keeps moving: it never seems closer and I know that as (if) I approach it at 24 weeks, it will move to 26 weeks. I am exhausted and have no idea how far I will make it in the marathon. I have never worked so hard while having no tangible finish line while simultaneously having the threat of complete loss hanging over my head. When and how will this end? I could never have prepared myself for such an emotional, heart-wrenching marathon.

My husband, on the other hand, explained it seeming like he is in a series of races. Perhaps this is slightly more optimistic. He described running a race which will end at 24 weeks but that he will immediately be thrown into the race for 25 or 26 weeks. Equally as exhausting, but at the very least, crediting the milestones he attains.

Either way, we are both exhausted by the prospect of having come this far but knowing that we might have only loss at the end of the journey. We want so desperately to have these two children.... sometimes I end up feeling like I cannot even see a finish line at all, I just feel lost, desperate and exhausted. 

Facebook status of the day: Two hearts breaking without having even lost... the running continues.

The Failure of Language

I consider myself to be somewhat academic. Through my undergraduate and graduate degrees I enjoyed examining language: sexist, misogynistic, violent, ambiguous, labelling, accurate... 

For example, given that my profession is in social work, I discourage the use of the "I feel" as a colloquial, and slightly passive way of describing a desire or preference. "I feel like a hamburger." or "I feel like you do not like x". These are not emotions, they are opinions. I was guilty of this for a long time, but now tend to use "I would like" or "it seems to me" in place of "I feel like". I digress... 

My slight over-analysis/totally reasonable fixation on language has added to some of my difficulty with pPROM and blogging. I want these children. Saying that does not do justice to the truth and sentiment therein. I pray to have these children. I beg the universe for these children. I hope, I wish,... none of these words sufficiently describes the desperation, love and fear that I feel when I think about the end of this journey. 

Every night I lie in my bed beside Lee while he sleeps and place my hands on my belly. I can feel kicks and movements within and outside. I channel every bit of love I have to them. I take deep breaths and visualize them going to my womb and each child. I think about how much I want these little Peas in a Pod to become my babies, children... I want to nurse them, play with them, see them learn to speak, go to school, have friends... Lee and I have a life and a lifestyle we hope to share with our children. We want to take them on trips, laugh, have morning snuggles, decorate Christmas trees, rake leaves... everyday stuff and out-of-the-ordinary stuff. 

And to be extra clear, I want happy, healthy children - because, who doesn't? I want my children to have quality of life. I want the world to literally be their oyster. 

Losing a child, when it has become a child (at this point they are likely to live for an hour or more before dying) but before it is strong enough to survive as a little person for long, I am not only losing a family member, I am losing everything I planned and hoped for that individual, us and our family. I will grieve the way our family used to be. I am losing any 'getting to know them' - I will never know about their sounds, facial expressions, preferences that can be seen so early in life. I will never know their personalities. 

So, saying "I want these babies" or "I want them soooooo much" or anything else simply does not, cannot, come close to accurately depicting the strength of that desire and love. This whole blog does not articulate what I feel deep within my core: that thing that has given me the where with all to continue this fight in the face of awful odds. I am so terrified of losing these children - one or both - but I already love them too much to not give every inch of my body and self to trying to bring them into this world. 

Facebook status: Never has language failed me so hugely and never will I take for granted my children

Update

So yesterday I made it to 21 weeks. We spent the day at the MFM clinic getting an update. The ultrasound revealed that Baby A and Baby B are both still gaining weight and have healthy heartbeats. The internet tells me that the average weight for a baby at 21 weeks is about 12.7 oz. Baby A is 12oz and Baby B is 14oz. I am hoping that next time we go both babies could be above one pound. 
Baby A continues to have cysts on the brain and had no measurable fluid. The membrane being stuck to the arm was not visible in this ultrasound, so fingers crossed that it was just a fluke last time. 
Baby B looks well, no concerns noted. 

We went over some of the things to be considered around viability and I was surprised as my MFM specialist's responses compared to what I have seen with other women. In the next few weeks I will have to do some research so that Lee and I can figure out what we are most comfortable with.  

Facebook Status: Keep on hoping, keep on coping...

In my Grandmother's words

Lee has been away for two nights now and I have barely slept for those nights. Instead of sleeping, I toss and turn, thinking of blog posts, ideas.. my time before sleep with Lee is usually used to debrief and when I am alone I tend to have circular thinking that keeps me awake. Along with my typical hope and doom thinking last night, I also thought of two things: how scary new symptoms are and how much I have changed (perhaps I will leave that latter for another day). 

Part A
To quote my maternal grandmother: "What new hell is this?" That is what I was thinking last night. I noticed on Sunday evening, the one time that I decided to leave the house in weeks, that I had more fluid leakage than that to which I have become accustomed. I was then distracted by all that pain Sunday night and Monday. It was last night that I realized that each day since Sunday I have lost more fluid. I am now leaking twice per day and each time it is more fluid. And if that's a new pattern, then honestly, what new hell is this? I am not ready for this to be over. While I remind myself frequently that this is out of my control and I have given it my best, there is a side of me that insists that I make it to viability or beyond. But, more fluid loss? Where is this fluid coming from? Does this mean Baby A is having less (perhaps imagined) time spent with some fluid around? Was there something else floating around in there that we do not know about? Or, God forbid (and I do not consider myself to be religious), is Baby B now losing fluid too? Baby B's health has been something I've relied to keep me going, but what if it is now compromised as well? Please, make my brain stop thinking. Stop guessing. Go to sleep! 

This morning I posted on various support groups and have been informed that as babies get bigger they can produce more fluid and that it is typical to notice an increase in fluid loss as the pregnancy progresses. My fingers are crossed that this is the case. Ultrasound and MFM appointment tomorrow will hopefully shine some light. 

Facebook status: Every day seems to be a new hell, but each with at least the hope of having had one more day

Scary Moments and Magical Thinking

I am not sure that I have any regular followers, but some may have noticed that I did not post yesterday - or on the weekend for that matter. I tend not to post on weekends simply because EllaGrace is home and there is generally more comings and goings. But yesterday I did not post anything because I was scared. On top of which, Lee left for a work trip to Toronto yesterday afternoon, a separation that I have been quite anxious about in general. 

The thing about Lee leaving is that half of my brain really believes that this could jinx us. If something is going to go wrong it is bound to happen while he is away. Then I will say "I knew something was going to happen... you never should have gone." The other half of my brain that functions more on the basis of logic is aware that this is not exactly how things work. But it is scary nevertheless. He would be four hours away: he could miss the birth, I might have to make big decisions without him, he could miss his only chance to meet these babies. Jinx-y!!! So, my fingers are extra crossed that I will be okay (more so than usual? Maybe..  but not sure that I can hope more than I already do)

Funnily enough though, the night before he was scheduled to leave (Sunday night) as I was getting ready for bed I started having this dull pain in my lower abdomen. I tried sitting and lying down but it would not let up. We figured it was a baby and Lee decided to try to sleep while I tossed and turned, searching for a comfortable position. An hour later I had not found any relief and my mind had run the gamut of possible complications: labour, infection, something I've never heard of... the usual. I woke Lee around 12h30 and said I wanted to call the midwives for their opinion, mentally preparing myself for a trip to Ottawa. The midwife said it did not sound like infection, since I had a specific moment wherein I began to feel the discomfort and that since there had not been any ups and downs it was inconsistent with labour. She suggested that a baby may have lodged itself somewhere strange, that I should go to the hospital if anything changed and that she would have her co-worker, K, come by in the morning. 

With a little bit of relief, but still filled with doubt, I revisited our discussion. If the baby is 'lodged' in an uncomfortable, low-lying area of my abdomen, then it may need gravity to help it out. Taking a page from my dear friend Christie's pregnancy solutions, I decided to try to get myself in an upside-down position. I had three pillows under my bottom and my feet up on our headboard: immediate relief! I took a Tylenol just before this and stayed up like that for about 20 minutes before shimmying myself back into a normal sleeping position. Needless to say it was a long night; I didn't get any sleep before 02h00. I was able to sleep on my back after that, but if I turned on my side the pain would occur on that side, but more fiercely. 

The following morning I was able to take my normal short shower and make it to my couch/station in the family room before the discomfort returned. I was propped up and whiny until K came by to check on me. She stayed for about 45 minutes discussing the pain and monitoring how it evolved while she was there. She talked about all sorts of delightful things relating to the pregnancy (ie. If they babies live for a few hours, do I allow EllaGrace to meet them?). She indicated that she believed the experience to be round ligament pain. I have had round ligament pain before, but it was more textbook, whereas this was more debilitating. Awful! She did hear both babies' healthy heartbeats and they were both moving. Later in the day I was fine when immobile but the pain was near excruciating if I tried to walk to the bathroom. I was packed with heating pads and consoled with back rubs until Lee left for Toronto and EllaGrace came home from daycare.

I know that my in-laws were fairly worried - my mother-in-law wished we would have also called the hospital (which we didn't for fear of too many opinions) and decided to take EllaGrace for the night and ensure that she and her spouse both had car seats ready so that they could get me to the Ottawa hospital and care for EllaGrace without trouble. And, to be fair, I did have a big emotional breakdown about the pain and my fear of Lee being away when my mother-in-law was here, so.... But, I wanted Lee to go to Toronto because we finally chose a couple of little things for the babies at Pottery Barn Kids that he could pick up. So, I told him to go shopping and hurry back - which he agreed was his priority! (Don't tell his boss). 

Anyways, I felt much better by bed time and have had very little discomfort today. Anything that I have felt has been when I was using abdominal muscles which is congruent with K's diagnosis. So, for now, I will stay on my couch with my fingers crossed and my head down. 

Facebook status of the day: Magical thinking is taking over me... logical me, where have you gone?

My Dark Side

So, I almost feel as though this post will need a disclaimer: Readers be aware, the following includes bleak, hopeless thinking, morbid humour, and too much personal information. 

I reached 20 weeks yesterday and instead of having that function as a milestone achieved, a halfway mark, I feel worse. My mood is lower.. I feel more down than I have in recent days. Getting this far was miracle enough, what are the chances I can really double it? Or more? And on top of that, the chances of two babies coming from this pregnancy seem so low, why have hope for both? Why think about the pregnancy as a 'twin' pregnancy when it is more like a complicated singleton pregnancy? I continue to feel movement (positive) but I am generally unable to tell who is moving. At the last ultrasound we were told the babies were transverse with both of their heads to my left. We also saw Baby B basically kicking Baby A in the head. Jokes about sibling rivalry were made, but it put a lot of doubt in my mind. If Baby B has so much range of motion, then no matter where I feel something, it could simply be Baby B. On top of that, I have been leaking daily. Basically sometime between 06h00 and 09h00 while I am sleeping I lose what I assume to be the amount of fluid accumulated in a 24 hour period. It is so disheartening every time it happens. Little Baby A must have been blocking the major area of the rupture a few weeks ago when I was able to retain just a little bit. But losing it regularly... my poor little Pea is unlikely to have the opportunity to work on those little lungs if the fluid is leaving every 24 hours. Between that - which in my mind is worse lately - and all the other strikes against the baby... it is so hard to have hope for it at all. 

I noticed yesterday that my mood was lower. My sister noticed too. I didn't attribute it to much, but it was upon reflection this morning that I started noticing other changes. For example, about 3 days after I ruptured in August Lee and I talked about taking a trip. I framed/tried to sell it to him in three different ways: 1) I will be turning 30 in November, why wouldn't we go somewhere with our daughter and celebrate the big 3-0? 2) The pregnancy will have ended by then and this can serve as a marker of us moving forward as a family and recognizing that we still have one another or 3) I've lost two children - it's my 'Dead Baby' trip. Who's going to say no to that? Anyways, Lee, the positive man that he is was only swayed by #1 and #2, but I have continued to make reference to my 'Dead Baby' trip nonetheless. In our first days back home and on bed rest I did lots of searching and put together some ideas for an extravagant, EllaGrace-friendly, somewhat affordable trip. I haven't actually looked at trips since then. Until yesterday. Yesterday I looked at time share opportunities (through my in-laws) and resorts... getaways.. ways to forget. The fact that I have restarted thinking about my 'Dead Baby' trip seems to be a clear reflection of how hopeless I am feeling. The statistics and the time we have to go for real viability is daunting, overwhelming and paralyzing. 

In the mean time, I (we) have been wrestling with names. We still have our original short list of names. We now have a list of names which are reflective of the journey of this pregnancy, whether or not the little Peas have long lives outside of the womb. I have a couple of unisex names. But, you know what? I cannot settle on names without knowing the actual sex. I come up with names that I think I like, but then I end up trying to put them into full names and they become gender specific. It seems like giving them names would be helpful to build an identity for each of them, to feel as if I know them.. but then, they just seem like arbitrary names that I might not have chosen had I had more information. Add that to the list of things outside of my control that I torture myself with.

Now that I have written out how I am feeling, I can hear friends and family reminding me that thinking positively is better for both the babies and I. I remind myself of the quote "where there is life, there is hope". I try to balance my thinking... at the very least distract myself... but you know what? That's damn hard. I believe that I have to prepare myself for whatever outcome. I have information in my email about a funeral home that will cremate my children's bodies and I have a friend designing and making an urn. That's a dark email account. My babies still have an awful prognosis. They do not have names. They do not even have an article of clothing or a toy to call their own. I am stalling and slow on all of my decisions - nothing is good enough or easy enough. I do not even get a break in my rest - my dreams are bad dreams, nightmares of having my children die, disappear or, on a good night, just your run-of-the-mill axe murderer dreams. 

So yes, I do need to balance my thinking. But yesterday and today, I have been unable to do so. And that too, is a part of this journey. Acknowledging the possible outcomes, trying to prepare myself for the unimaginable. Better days will come, or it will end. This is where I am at today.

Facebook status of the day: Stuck, powerless, alone... but honest

My first pregnancy photographs

I have been nervous throughout this pregnancy and, to be fair, have spent most of the summer away from home and my husband. As a result I did not take any pregnancy photographs documenting my belly. Once I ruptured I decided against it - why would I want to remember how I looked in the worst days of my life? Over the past five weeks I have reconsidered this and today, at 20 week gestation, had the first photos of my belly taken. It is fun to compare my belly from a singleton pregnancy and my current pregnancy... see below.

                                          20 Weeks with EG       20 Weeks with 2 Peas

The Wrong Side of Mercy - 20 weeks gestation

Shortly after we made the decision to continue the pregnancy my partner, Lee, made a plea for mercy. He said that he hoped that we were shown mercy one way or another. Essentially, we agreed, that mercy would be to miscarry soon or to have a long, viable pregnancy which resulted in babies. (Would one live baby be considered mercy? I don't know).

Today I am 20 weeks pregnant. I can safely say that we both agree that we have passed the 'mercy mark' on the miscarriage/infection side. At this stage of pregnancy, if born the babies may live for a couple of hours before passing away in our arms. They will look like babies. And for me, it will not be a 'miscarriage', but then, perhaps that has been true for a while. Either way, 20 weeks seems to make a mark for me that infection or spontaneous labour is no longer merciful: I have waited to long, hoped to hard, begged too loudly and cried to hard for the loss of the pregnancy to be anything but cruel.

Sadly, we are a long way away from the other side of mercy. Viability is technically set to be 24 weeks gestation, but the statistics/anecdotal evidence I have read suggest that 26 weeks is really when the babies start to have a fighting chance (look at the stories at http://www.inkan.se/pprom/). Four or six weeks (or even better, longer) still seems so far away. I have already done five weeks of bed rest and it has been manageable but it just seems to me that the chances of infection or other problems just continue to grow as we move slowly along the gestational calendar.  

I have never been a patient person. This long, drawn-out, emotional rollercoaster is just killing me. I seem to be edging nearer and nearer to the line where hope is reasonable, and yet I am just not there yet. It's like an ever-moving target. 

Facebook Status: I'm begging you for mercy...