Wednesday, January 26, 2011

December 2010... One bummer, three brothers, many blessings

In early December, I noticed a sudden surge in my girth. We went swimming one week and my bathing suit fit fine. The following week, there was a vast expanse of exposed belly protruding from underneath the top. I was having trouble breathing, especially when sitting, and eating made me terribly ill. This sounded to me like the beginnings of polyhydramnios, an excess of amniotic fluid that is common with CDH babies. It usually starts about 28 weeks, right where I was, since that's when babies start to swallow and digest amniotic fluid. A CDH baby may have trouble doing this because of digestive organs being squished up into the chest. 

My next ultrasound confirmed that there was an excess of fluid. Anything over 18 cm was polyhydramnios and I was at 24 cm. I was told a severe case was 30 to 40 cm so not to worry. By 2 weeks later, I was at 35 cm and that is pretty much where I have stayed since then. While this was typical of the third trimester with a CDH baby, I had pushed it to the back of my mind in the hopes it wouldn't happen for us. Now I had a much higher risk of premature labour, as well as a higher risk of uterine rupture because of pressure on my previous surgical scars. It was the first time I worried about me and not just about Samuel. Of course I wanted him to come out okay. But how could he be okay - not to mention the rest of my family - if I didn't come out okay?

The weekend after I found this out was the last of my Hakomi training. I had completed my two years of this amazing professional learning and it felt like a wonderful accomplishment. While others were grieving the loss of the group and the experience, I felt nothing. I was all full up on grief. I could barely sit in the room. It represented a part of me for which I no longer had any space. My intellectual energy was diverted, my emotional self unavailable. That was when I decided to wind down my counselling practice early. I needed my entire attention to be with my family. By Christmas I was done with my two days a week of clients and had just some transition work to be completed.

Many more blessings came to us in this time. Our friend Marijan stayed with us for a few days and took over our kitchen, cooking and baking to fill our freezer before returning to Ottawa. My brother-in-law John came to visit from Vancouver and tuned into the pain of our family so that he could become another person holding us close. My Hakomi colleagues made me a bracelet, each adding their own bead to give me something tangible that represented their combined care and support. My friend Susan in Virginia sent me a beautiful quilt that she made on behalf of my mamas group. A mum from the playschool wrote me a beautiful card and gave me the candle that she'd been lighting for me for nine days while she prayed novenas for my famly.

One enormous blessing was the connection made to a friend of a friend, a woman who lost her baby when he was born terribly ill at 30 weeks gestation. Our circumstances were quite different and yet we were finishing each others' sentences within a half hour of our coffee shop meeting. We spent two hours together talking about our experience with tears and deep understanding. I had amazing support all around me but this was a unique bond to be able to talk about the death of a baby, the funeral, the reactions of others, the heartbreaking decision to let go, the impact on the rest of the family with someone who just "knew."

There was no greater blessing through all of this than Samuel's three big brothers. They saw me cry too often. They watched too much television when I was ill. Jakey had enough playdates that he started to balk at them by mid-December. He wanted to just be with me. We watched movies together or read books in bed. During the times when I had to leave him for an appointment he couldn't attend, he became anxious. Once I got called home from Christmas shopping because Jakey was crying hysterically and worrying that someone would take me, something would happen to me.

We talked regularly about what was happening; I didn't want them making up their own version of the added stress in our house. They knew by mid-summer that I was pregnant and we talked about having a 4th child in our family. This inspired a talk between Daniel and I about how I got pregnant. I unsuccessfully dodged going the whole nine yards on this one. But HOW did the sperm get IN there with the egg? My answer yielded a shocked, "Why on earth would anybody want to DO THAT?!!" Good boy. Hold onto that for another decade or so.  

After we knew how sick our baby was, we talked to the boys about that too. We told them that he had a difficulty that meant he would have trouble growing lungs, that babies didn't need lungs in utero but that he would have a very hard time once he was born and he would die if he couldn't learn to breathe on his own. Daniel got more of the technical information about the diaphragmatic hernia. Zachary and Jacob understood what they were able to.

Their responses to all of this were beautiful, funny, and inspiring. Daniel is quietly thoughtful. It is clear when he does talk that there is a lot of processing going on inside that eight year old introvert mind of his. He's wondered what it would be like if Samuel dies and, if he lives, what it would be like to have a brother with severe disabilities. His questions are often technical; when he came to the ultrasound, he was fascinated with the equipment and how things worked and what they could see. I see him watching Chris and I, trying to discern what else might be going on. When we talked on new year's day, his hopes for 2011 included "getting really good at soccer and seeing mommy be well again."

Daniel seems torn between being interested to feel the baby move in my belly and being utterly freaked out by it. Who can blame him?! It is like Invasion of the Body Snatchers in there, especially because he has so much extra room to move with the additional fluid. By 10:00 each evening, Samuel frequents the Fetus Nightclub circuit and his crazy gyrations freak me out as well.

Zachary is the one who will run from across the room to feel Samuel move. His interest in the baby is emotional, almost spiritual. He hugs my belly and talks to Samuel through my belly button, which he imagines is some kind of audio port. He says, "This is your big brother Zachary. I hope you are alright in there." He can be very protective of me; just as Jakey's anxieties were abating, Zachary became glued to me day and night. He said he worries that Samuel is hurting me or that I won't be okay. He often comes up with questions out of the blue so I asked him if he thinks of the baby a lot. He said, "Oh yea, all the time. Well, not ALL the time because I do have work to do. Like sometimes Question of the Day is quite challenging and I need to focus."

We told them they could ask the doctor a question at the ultrasound they attended and Zachary wanted to know if and how and when the baby was going to die. My heart broke just a little. Now if we ask him about the baby, he says, "We just have to wait and see. God will decide." My wise six year old.

With Jacob being just four years old, it is hard to know what he understands. Given the same opportunity to ask a question at the ultrasound, he asked "Is the baby naked in there?" The Perinatologist, with his years of experience and education, straight-facedly assured Jakey that the baby was naked in there. Jakey was horrified. "Not even a DIAPER?!" That's right, the doctor affirmed, not even a diaper.

Jakey is my chatterbox and Samuel is often the topic of choice. We have deep talks like the following: "Mum, if Samuel met the Hulk in a fight, that would not be a fair match, do you sink so? But if Mr. Incredible met Hulk in a fight, that would be a fair match. But if Samuel met Mr. Incredible in a fight, that would not be a fair match, do you sink so? But if Iron Man met Hulk in a fight, that would be a fair match, right Mum?" It is important, but not always easy, to participate meaningfully in the hours and hours of this type of conversation.

His talk about Samuel is embedded in our every day together. He goes to school three mornings a week so we have lots of time just hanging out. One day he told me he had three thoughts. They were, in sequence: "First, when do I get to play soccer again? Next, maybe God will think it's okay to give us another baby after this one dies. Next, mama your legs are keeping my feets warm." He is currently gestating a baby of his own, a wee fetus by the name of Timothy. No word on the expected when and how of Timothy's birth.

Yummy sweet little men I have. I know my boys are affected by this experience in some ways I would rather they not be and in other ways that I think will ultimately make them stronger, wiser, more empathetic little people. I went to extra lengths to make sure Christmas was normal and fun - and my mom did her usual overboard Nana schtick. Santa came through with a Wii at last and there was much food and excitement. If I worry too much, I look at this picture from Christmas day and decide that, no, these are not traumatized children. :)

Tuesday, January 25, 2011

January 2011... A hopin' and a prayin'

We are into the final weeks of our time with Samuel safe in my belly, with a c-section birth scheduled for Thursday, February 17. I savour every kick and roll, although the little bruiser can sometimes double me over with a punch to some organ that is not meant to be punched. We are "cautiously optimistic" at this point. He may die within hours or days of being born or he may live in the NICU and then the Children's Hospital for six months to a year before we can bring him home. My prayers are as they were back in September... for peaceful journey for our little boy, whatever that means and however long he has.

I am not officially on "bed rest" but it feels like that some days. I closed my counselling practice for now and, while it was tough with some of my clients to refer them or put things on hold, it is a good thing all around. I still give my kids breakfast and make lunches and take them to school. I still stay on top of the banking and laundry. I'm not much fun for chasing and wrestling but we go swimming at the therapeutic (read: warm!) salt water pool near our house and it's fabulous to play with my boys and not have to hold up my own belly. 

Too much being on my feet or walking makes it feel like things are falling out that should not be falling out - as evidenced by my most excellent sense of judgment when I went to Zoolights with Chris and the kids and then got to debate all the way home whether it was real labour or false, if we should go to hospital straight from the zoo or try going home. So I am in bed a lot trying to stay comfortable and, much more importantly, trying to stay pregnant to the optimal 39 weeks.

I have weekly OB appointments and ultrasound appointments now. I had another meeting with the Neonatologist and a tour of the NICU. The doctors are consistently quite encouraging at this point. It's like they know that I am in the home stretch and it is hard, that I know all the dark stuff and really just need a pep talk wherever I go. My favourite nurse at the clinic hugs me and tells me that I am looking beautiful and won't get any pity if I don't tone it down. The Perinatologists tell me I am doing a great job keeping him cooking and giving that lung the best possible chance at maturity. The Neonatologist is very excited that he is so big and fat because that means the rest of him will be strong and healthy. One of my OBs said that I can come in every day if I just need encouragement to get to the end. I soak this stuff up, but it is seeing my wee baby on the ultrasound screen every week that bolsters me the most, reminds me why I am doing this.

I am tired, achy, and scared. I've done "end of pregnancy" stuff before and it's not this. I am sure this is the cumulative physical and emotional depletion of the past many months. The polyhydramnios is severe but holding steady and baby is big and growing; the combination means that I am really big and have yet to get bigger. I caught myself one day thinking what every woman thinks at some point near pregnancy's end; thank goodness it's almost over. I sucked in my breath at that. When the pregnancy is over, there is another kind of struggle waiting for us. We don't know how Samuel will do and how long we might have him for. Me staying pregnant means he is safe and mine. And it gives him the best possible chance when he does make it to the outside.

How did I go from running 20-30 kms a week and resolving to stay fit and healthy throughout this pregnancy to spending hours a day in bed?! Who knew I was even CAPABLE of resting this much?! I am a busy, competent person! And now my parents have given up their winter in Arizona to come over a couple of times a week and entertain my kids and do the vacuuming and cook. People are bringing us food several times a week and taking my kids for playdates. And I don't even have any fight in me. The kindness still makes me cry but I can't turn it away like I once might have.

What activity I do plan is quiet visiting with friends and "nesting." I was finally able to pick out an outfit for Samuel with the help of Chris, Lori (shopper extraordinaire) and my mum. I'd been told by several people to have an outfit for him so that we could dress him and take pictures, and then have the clothes with his smell on them to take home if we lost him. I'd gone to the store several times and just ended up crying and leaving. But now I have a bag with a freshly washed shirt, pants, socks and hat, along with some receiving blankets that my mum made and two bears, one from my parents and one that the boys picked out for him.

We went for pre-natal (belly) photos - all six of us - with Julie Marwood. She thought it would be fun to have the boys paint handprints or messages on my belly towards the end of the shoot. So I brought all the stuff we would need thinking, "Julie, you have boys. Have you lost your marbles?!" After an hour of my boys bouncing off the walls of her studio, she didn't mention the paint idea. Funny, that. I will say, though, that my boys missed school and wore shirts with buttons and collars, which is a sign of great love coming from Daniel especially. So I know they understood the importance of those family pictures at some level.

We had a 3D ultrasound so that we could see him and have pictures of him that weren't the grainy black and white of 2D ultrasounds; I get one of those weekly to monitor the polyhydramnios and check on baby but it's become increasingly hard to see him there because of the fluid and baby's size and position. The 3D ultrasound was an extra treat. With my parents and all three boys in the room with Chris and I, it was like we were just there to spend time with him as we might after bringing our newborn home from the hospital. Felt very special to have that.

Here's what he looks like at 34 weeks gestation and weighing an estimated 5 pounds, 11 ounces.


Gotta love those chubby cheeks. And yes, that is a foot tucked right behind his hand. Clearly a flexible child. Given that cute little ear, the hair, the 10 fingers and 10 toes, we will try to ignore that the hand to the forehead and the expression on his little face are clearly full of attitude and exasperation.

We now wait for our son, continue to watch that he and I are doing okay, and hope that I don't burst before the c-section. I keep picturing that huge guy in Monty Python's "The Meaning of Life" - you know, the "better get a bucket" guy - who eats so much that he explodes when John Cleese feeds him a mint. Um, that won't happen to me, right?

Monday, January 24, 2011

November 2010... Rivers of love

There was a certain amount of peace that came from knowing what would happen now... Samuel would likely live to term and he would likely die shortly after birth. So our job was to use whatever time he was part of our family to infuse him with love and to learn from him. Samuel's middle name - Meir - means light or illuminate. Indeed, he was shining light into corners of our own spirits. To love and to lose one of my children was not an experience I would ever have asked for but, now that it was here, I wanted to be open to the teachings of this journey.

One of the very dear people in my circle lost her son when he was 14. She took me by both hands one day, looked into my eyes and said, "I want you to know this. If the worst happens and he goes, there will be an incredible void left in you. But the light will come. The light will show up and fill the void. And it will not feel like that could be true so I want you to know that the light is coming." One of the ways that Samuel has offered me light is by connecting me to these blessings from all around, often from unexpected places.

One day at the playground a woman asked me if I was expecting another and somehow I ended up telling this complete stranger about our story. It turns out that the beautiful healthy-looking 2 year old playing behind her had been in the hospital for the first 6 months of her life for a rare heart defect. We ended up crying and sharing experiences before we had even shared our names. The resonance of those types of meetings was so powerful to me, knowing that someone had been here, knew this angst without me trying to find words for it.

I joined a pre-natal yoga class and found a place to go be a "normal" pregnant woman for an hour and a half each week. I sometimes cried in restorative poses, letting the waves of grief roll through me as I connected with my body and my baby. One of the women in the class approached me afterwards and we ended up talking in the hallway. She'd had her struggles with infertility and now her baby was due at Christmas time. She listened to my story without platitude or fixing and we cried together. Sharing tears was sometimes the only thing that helped me feel less alone; there really were no words.

In early November, we met with Dr. Anne Tierney, a Neonatologist from the NICU at Foothills Hospital. She offered us a picture of what would happen when Samuel was born and we discussed philosophy of care - what we wanted for him and what they could and would do for him. It was an instant connection and we felt entirely heard and respected. She would be the most important person in helping us negotiate our baby's early life and here she was, referring to Samuel by name, answering difficult questions in the clearest, kindest possible way, and giving us every confidence that we would be accompanied. This was a day that I saw my husband's beautiful unending hope build a cautioned wall, where he let in the possibility that everything might not be alright. It was Dr. Tierney's gentleness that was able to do that without crushing us.

A couple of days later, I flew to Denver to be with six of my mum friends from around the U.S.. This group of 13 women were among my most constant support through this; when I couldn't talk about what was happening, I could email my mamas in the middle of the night and their messages of love would trickle in and buoy me. One of the mamas had lost a baby at 25 weeks and our connection held a wordless depth. At the end of our weekend together, I asked them if they would put their hands on my belly and say a blessing for Samuel. We stood in a circle, their 12 hands covering my belly, my hands on my heart, saying nothing and crying together. I felt a surge of peace go through me to my baby, that peace that comes only of knowing love. It was amazing and it seeped into me over the days beyond. 

By November, it was getting harder to hide my pregnancy. Every day I dealt with the questions, people asking the typical, reasonable questions about when was I due, was it a boy or a girl, how exciting! Sometimes I was able to smile and answer and move on. But there was always a dilemma in that; unless it was a grocery store acquaintance that I would likely never see again, these types of painful conversations would continue and I would have to say something eventually. I couldn't imagine returning to work or picking up my boys from school to people asking me with smiles how my new baby was and me telling them then that he had died. So I let them know that he was sick and we weren`t sure how he would do after birth. I was stronger now and able to deal with their responses. It was okay. But somedays I did this over and over again and went home heartbroken and exhausted.

Hardest here was with my counselling clients. I needed them to know that I was still able to look after them and yet there were clients I had known for a long time, who were deeply intuitive, or who were seeing me for issues not far off of my current experience. They sometimes read in my face that there was more to this story and I measured authenticity against professionalism again and again. Still, the blessings came in finding out that even some of the people who I cared for deeply in my work and in my spirit were also holding out care to me.

My friends showed up each in their own ways. Lori listened and prayed and put to use her formidable organizing skills to help me plan for his birth and possible death. Jennifer listened to me and was able to make me laugh even when things seemed darkest. They both cried with me and I felt held. Roshni and Alison were newer friends, mums I knew through playschool, and they took me out for coffee, told me that the support started any time I was ready and had no end, that there would be meals and school pick-ups and whatever else I needed. I was aware that everyone had a different way of responding to what was happening to us and a different way of showing up. With few exceptions, I felt support starting to flow all around me.

Another friend of mine organized a meeting for Chris and I with her colleague, Dr. Ian Mitchell, a pediatric respirologist and bioethicist at Children's Hospital. That visit provided us with an invaluable opportunity to understand the lifespan challenges that our baby might face if he lived, as well as to talk about the balance between prizing life and accepting peaceful death.

As we were walking out and discussing what a blessing Dr. Mitchell's wisdom was, Chris met and struck up a conversation with a Hutterite woman who was there for an appointment with her son. Marta asked why we were there, and then she put her hands on mine over top of my belly and told us she would pray for Samuel. She hand-made us socks and warm hats for the boys and has continued to call with reminders of her prayers.

There are many more of these moments from friends and family and strangers - words, looks, cookies, prayers, cards, emails, playdates, open ears and soft hearts. They are part of Samuel's light in and of themselves. But they have been extra illuminating for me. I am used to being the giver, helper, listener - capable, independent, busy. This experience has brought me to my knees in many ways and I have learned what it is like to let people look after me... I may even possibly kind of get good at believing in it as a way of living. One of my mentors told me once that I was standing near the river of love, that I could even build a bridge over it so I could look down upon it, and that someday he hoped I could sit down in the cool water and feel it flow over me. I think I might be there, Jon, thanks to my Samuel.

Saturday, January 22, 2011

October 2010... Grief, hope, and Gramma

Throughout the time that we were learning about our baby's struggles, my Gramma was also struggling and clearly at the end of her life. We'd told her early on about my pregnancy and my dear Gramma, with all the babies she'd seen in her life, was thrilled for this baby too. He would be her 20th great-grandchild but it seemed certain that she would go before he came.

One of the first things I did when we found out that there might be something wrong with the baby was look for names. I wanted to name the baby for both of my grandmothers and I wanted my Gramma to know that before she died. Sitting up late one night searching baby name sites on the internet, I found the name Meira (May-EAR-ah) was Hebrew for Helen and Margaret. Here was a name to honour my maternal grandmother, Margaret Irma, who died in October 1990, and my paternal grandmother, Edna Helen. Finding out that the baby was a boy was just a bit funny. Really, Husband, you would think you could offer up an X chromosome once in four tries! :) The baby's middle name became Meir and Chris chose the first name Samuel.

We told my Gramma the name, and also that there were some concerns about our baby. She said only that God would take care of it, that God would decide. I have held to that many times. On October 8, I went to the hospital where my aunts and uncles and cousins were sitting with her in various rotations. I watched my dad and his brother gently dab her lips with water and vaseline and hoped that I would raise such kind and empathetic men. I shared tears with my mom and my aunts as we watched our beautiful mum and gramma sleeping painlessly but with laboured breath. She died in the early hours of October 9 at the age of 95. She was more than ready to leave this earth, to go to the parents, siblings, husband and baby who had gone before her. The void was ours; she was at peace.

I could see how everything that was happening was weighing on my parents, and especially my dad. As my wise Zachary pointed out when his Great-Gramma died, "I know everyone is sad but Boppa must be the saddest. That was his MOM. He had her for his whole entire life." My Gramma was an incredibly special woman, revered in our family, loved, respected and well-cared for by her children. At her funeral, they acknowledged that she had six children, including her baby girl who died. That baby was born 75 years ago and lived only two days but she was still real; it made me think how your babies are your babies always and forever, no matter what. I held my Samuel Meir, my fourth son, tight in my belly.

My grief was getting all mixed up. I was sad to lose my Gramma, sad to see my dad hurting, sad for my own family and for the wee baby who I loved and wanted but who I didn't think I would get to know. People told me not to lose hope, to pray and we would be granted a miracle, to stay positive. I wanted to do that but I wasn't good at it. Every time I let myself hope, there would be another piece of information that blew that hope to bits. That was the most painful feeling of all, to rise into hope and then plummet. What kind of mother was I if I gave up hope? And yet, if he wasn't meant to be here, didn't I need to be able to let him go? As with my dear Gramma, it was a selfish hope that would want her to stay in this world where she was no longer meant to be, where she was suffering. There was love in our good-bye to her. I was dancing with my grief and my hope, learning about peace and surrender.

This dance was powered by another series of tests now that our baby was big enough to see more of what was happening for him. At the beginning of October, we had a thorough fetal morphology ultrasound. Daniel, Zachary, and my mom came into the room with us - their chance to meet baby Samuel. Jakey had been to an ultrasound with me a couple of weeks before. They stayed for a while and were actually more interested than I even thought they would be. They could make out his little face and limbs and were fascinated by his movements and heart beat. The ultrasound technician got a photo of Samuel with his hand up to his face; she printed a copy for each boy and attached a sticker, told them it was a picture of their baby brother picking his nose. We had a good laugh at that and the picture remains on our 'fridge.

The boys left with my parents to pick up Jakey from preschool and Chris and I had some time alone with Samuel and our lovely sonographer, Alison. My heart soared to see my baby. He appeared perfect in every way - so long as we ignored the heart squished up next to the stomach and the lack of visible lung development. My tears were delight and grief together. The last thing she needed on her checklist was to see him open and close his hand. Anyone who has ever pried open a newborn's little fist knows that they don't actually open and close their hands a lot. So we waited, watching him, and eventually he opened his hand and closed it over his "boy bits." We laughed again and Alison and I turned to Chris, "What IS it with you boys?!" I implored Samuel to leave the bits alone and prioritize growing himself a lung or two.

We waited for the Perinatologist to come and talk to us. It was Dr. Simrose that day and she explained that the heart looked strong and they could see that the kidneys were normal. This was good news, as good news went. I asked her that day if we could donate his organs if he died, that we wanted his little life to be meaningful to someone, to feel like he made a difference. I could barely get the words out before I started to cry. She teared up too and explained that his organs would be too hypoxic by the time he died, but that his life was already meaningful, that it had changed us forever, and that we might not even know how meaningful for months or years. This was true. And comforting. I surrendered a little more.

The following week, Samuel had an echocardiogram. I laid still and quiet for nearly an hour while a specially trained sonographer did a very detailed ultrasound of his heart. I feared that we would find something terribly wrong with Samuel's heart, at which point he would likely be considered palliative at birth. Then I felt my Gramma there in the dimly-lit little room with us and I sensed her telling me, "his heart is strong... his heart is strong." I felt her with us for about 20 minutes and was deeply comforted to think that she was watching over our baby. When the sonographer left the room, Chris leaned over and said, "your Gramma was here. She said the baby's heart is strong." I said, "I know."

The Cardiologist came in a few minutes later, having reviewed the films from the echocardiogram. She told us that the baby's heart was strong, squished over to the right side of the chest, yes, but structurally and functionally perfect. This was the last of the possible co-morbid anomalies for CDH. His chromosomes, kidneys and heart were all fine. He was officially an "isolated CDH" meaning that his only issue was the diaphragmatic hernia. There was still the MRI in a couple of days but the Perinatologist we saw that day, Dr. Connor, told us this was a more favourable outcome for CDH than we might have thought before.

Our hearts soared with hope that day. We came home to my parents, who had been watching the boys, and told them there was good news. We told our children that there was a chance that Samuel would live, that he would have some difficulties with breathing and development but that they may be getting a baby brother after all. Going into the MRI later that week, my stress was of the procedure rather than the outcome. As I checked into the Children's Hospital where fetal MRI's are done, I saw all those sick children who have tests like MRI's done all the time and I told myself to suck it up. Aside from being noisy, the MRI was no big deal. We went home that day to focus on planning Gramma's memorial service, knowing that the results were still a week away.

On October 21, we met again with Dr. Pollard from Perinatology and Dr. Brindle from Surgery to review the combined results of the ultrasound, echocardiogram, and MRI. What they had to say was the most devastating news since we'd been given the original diagnosis two months before. The hope we'd been given the previous week was based on the fact that the heart was good but it didn't take into account the full picture for our baby. The most damning information was twofold: 

a) The MRI showed a lung on the right side of the chest with an estimated fetal lung volume of 22.5%. Anything under 35% was considered to be in the most severe range of outcomes for CDH. There was recently a baby with 30% who survived and went home after a year in hospital but no literature for babies below that surviving. There was no visible lung on the left side of the chest where the stomach and intestines were developing.

b) The left lobe of the liver was seen up in the chest, indicating that the lung would have even less space to grow and that the hole in the diaphragm was large. The repair surgery would be extensive and complex, even more so because of the compromised development in blood vessels to these important organs.

Since babies do not use their lungs in utero, Samuel would be okay up until then unless the heart became too stressed from having inadequate space to grow and inadequate lung to pump to. He wouldn't be able to breathe when he was born and may not even have enough lung to be resuscitated. The doctors were reluctant to offer numbers but agreed on 50-80% that our baby would die in the first 72 hours after birth and, if he lived to be strong enough to go to surgery at all, had a 50% chance of surviving that procedure.

Chris and I just sat there and stared at them. We thought we were receiving good news last week. The doctors were patient, compassionate, knowledgable - and also willing to say that they were making predictions based on experience and literature and the information for our specific situation, but that they can be wrong and every baby is different. The hope we had the week before collapsed. I felt like I was floating. My heart ached.

Chris and I cried and walked together after the appointment. That night, we went out for tea while my parents put the kids to bed. We had to make a decision by morning about continuing this pregnancy or not. I was scared beyond anything I had ever felt. Chris told me that he has had a very hard life and now he has a very beautiful life and he was not going to let anything happen to his family, that he is a strong person and will take care of us. Samuel was a member of our family and we loved him. He was not suffering. He had a chance. More surrender. We told ourselves that there would be peace and meaning in whatever God offered to us in this journey.


Wednesday, January 19, 2011

September 2010... A new reality

August 26th was Daniel's 8th birthday. Chris and I took eight children to Calaway Park in 30 degree heat. He was prince for the day, running from ride to ride with his friends, stopping for snow cones and ending with birthday cake at a picnic table in the shade. I was thankful for the chance to do something normal with my family. These were our last few days of summer vacation before the start of grade 3 and grade 1 for my big boys, playschool for my littlest one.

I was integrating the new information about our baby, that he would likely not ever come home with us. I cried sometimes but mostly tucked the experience away to make time as normal as possible with my children. I felt a deep and somewhat desperate appreciation for them. The perinatal nurse who guided us through the last two appointments said there was no reason for what was happening for our baby, that everything had to fire perfectly and in sequence during a baby’s development and a misfire could mean tragedy. My three healthy boys were miracles to me in a new way now.

The second trimester was usually the time I heaved a sigh of relief, became more open in telling people I was pregnant, started to appreciate the rounding of my belly. This time, I hid. I wore big sweaters and colourful scarves that draped down the front of me. I chatted with preschool moms and playground parents without acknowledging the heaviness in my heart. It was good to laugh, to have places where I could just be who I was and not this new person I was afraid of becoming. I didn't want to cope with people's reactions to our news. Even the kindest questions and most empathetic looks shoved me into my pain; I was spending enough time there on my own. And I didn't want to create a bigger network of people to tell if our baby died.

Night times were different. After the boys went to bed, I sat alone at my computer reading everything I could find on CDH. I wept for the other families with babies suffering or dead, wept for my own sweet baby. When I finally went to sleep, I had vivid dreams that ended with me crying and alone in a pool of blood. They would often start out with something lovely, images of my pregnant self, excitedly awaiting the birth of my baby, a circle of my women friends surrounding me to touch my face and bring me blessings. I was reading The Red Tent and moved by the way that women shared and blessed child birth together. My dreams still always ended with me alone in a pool of blood.  

The next week began the appointments. I had an amniocentesis on August 30 and got the preliminary results back two days later; chromosomes appeared normal and we learned that baby was a boy. People always say it doesn’t matter if it’s a boy or a girl so long as the baby is healthy and I knew this to be true now more deeply than I ever could have imagined. I met with Dr. Jeff Pollard the morning of September 3 to ask some of my questions and then met with Dr. Mary Brindle, a pediatric surgeon at the Children’s Hospital, that afternoon. Both offered me time, compassion, knowledge, a keen sense of the amount of information that would satisfy me but not overwhelm. I wanted to know. I kept reading every night, moving from general websites into Medline articles. I left another Google window open at the same time so that I could search out the meaning of the medical terms and understand the research.

These doctors gave a survival rate of 20-50% for our baby. He would be in distress from the moment of birth because he would be unable to breathe. He would be intubated, respirated, taken to the NICU. They predicted that he would live hours or days. Those who survived the early days live in the NICU until they are strong enough for surgery, then are transferred to the Children’s Hospital. They often spend the first six months to a year living in hospital for various procedures and surgeries until they are strong enough to go home.

The surgeon emphasized the long term picture, talking about children she sees for multiple surgeries over many years, the respiratory issues but also the gastrointestinal, developmental, and neurological (from lack of oxygen at birth) implications of CDH even after the initial surgical repair. The 20-50% survival rate had to be measured against the quality of life for those survivors. Often, these children suffered through shortened lives. We had to consider what we wanted for our baby - and for our family.

I met with a Geneticist, Dr. Julie Lauzon, and reviewed the amniocentesis results and the overall picture for our baby’s CDH. The amnio profile indicated that everything was chromosomally normal and, while good news, it didn’t increase the survival odds for our baby. I was collecting information and searching for the hope but finding dire predictions at every turn. The doctors were unequivocally respectful, compassionate, honest, brilliant, gentle, and I was awed and full of gratitude for their care. Dr. Lauzon assured us that the "what did we do wrong" place was not worthy of a visit. This was not a anomaly we could blame on a toxic lifestyle or our old chromosomes.

There were more ultrasounds and the routine prenatal appointments. The full amniocentesis results came back with everything normal. Mid-September I started spotting. My first response was fear, panic really. Then I started to pray; I asked God to take care of my baby, to offer him a peaceful journey, whatever that was meant to be. If he was to die within me, I imagined him held in my belly, in my love, as he moved on. I sat with my hands on my belly and cried, give my baby peaceful journey.  

When I was still having spotting and a bit of cramping a couple of days later, I went to my doctor. She had trouble locating the baby’s heartbeat with the Doppler and they called around to find a clinic that could do an ultrasound right away. With Jakey in tow, we headed across the city. Everything looked fine with both baby and me. There was no reason for the spotting and no reason they could see to worry. The next day it stopped.
After that initial blur of information and appointments, I took a couple of weeks off to let myself just be pregnant and in my life. Through each appointment, I was "on" - asking questions and processing information. Each doctor talked of the option of interrupting the pregnancy and that weighed heavily in my spirit as well. Afterwards, I would collapse for hours, emotionally drained. I was having a grief response and knew that it was unlikely to end soon.

August 2010... The diagnosis


On August 24, 2010, Chris and I returned to the Maternal-Fetal Medicine clinic for Chorionic Villus Sampling (CVS), a test to analyze chromosomes much like Amniocentesis. I was just shy of 14 weeks pregnant. Everything was going as planned. Anxious parents - check. Nurse reviewing the procedure for informed consent - check. Preliminary ultrasound to check baby's position - check. Then the technician left to get the Perinatologist for the actual test.
The technician and Dr. Pollard spent a good deal of time looking at the ultrasound, speaking in hushed but not alarmed tones. Chris and I thought nothing of this; we were just enjoying watching our baby on the television screen, seeing the movements and that little flicker of a heart beat. It wouldn’t have occurred to us to notice that the heart was beating on the wrong side of the baby’s chest with the stomach next to it – something we are accustomed to seeing now.
Dr. Pollard turned off the machine and looked into my face with his kind eyes. He said, “What we are seeing here with your baby is worse than anything we were hoping to determine by doing the CVS. Your baby has a Diaphragmatic Hernia.” Chris was sitting on the chair next to me. Our sonographer and nurse were standing just behind him looking sombre. The room was dimly lit and large. All of these details I remember even though I felt locked into a tiny little space with only Dr. Pollard’s gentle voice in it.
Congenital Diaphragmatic Hernia (CDH) is when the diaphragm forms with a hole in it so that the contents of the abdominal cavity can move up into the chest. The most dramatic implication of this is that the lungs cannot develop properly when their space is taken up by abdominal organs growing in the chest. There is a wide variance in the severity of diaphragmatic hernia – babies tend to do better if the hole is smaller, if fewer abdominal organs move up, if the liver remains below the diaphragm, if the organs move up after the lungs have had some time to develop. As well, half of CDH cases have co-morbid anomalies of the heart, kidneys, or chromosomes which impact the baby’s prognosis.
What they could see in our tiny baby was the stomach and intestines growing in the left side of the chest with the heart pushed over to the right side. We were told that day that babies who develop this defect prior to the second trimester – as our baby had – had a very poor survival rate because the key gestational stage for lung development has yet to even begin.
Dr. Pollard spent about 45 minutes explaining things to us, answering our questions, showing us on the grainy black-and-white ultrasound what indicated our baby was so sick. We were given the choice of trying to go ahead with the CVS that day, even though it would be difficult because of the position of baby and placenta, or going home to process and coming back in a few days for amniocentesis. Chris and I were blank. It was like my thoughts and feelings were swimming around in some far off land, completely inaccessible to me. There were no words and I couldn’t make the simplest decision. The doctor, nurse and sonographer left us alone and I finally cried. I wanted to go home. I wanted to go home and climb into my bed and wake up to some other reality.

Sunday, January 16, 2011

Summer 2010... The first trimester

I decided to start sharing my experience with baby as we are getting close to his birth and there are a lot of people who care about him and are asking for updates. It is easier for me to put the information all in one place for those who do want to know... and it has turned out to be therapeutic for me to be doing this writing.

I have been journalling for our baby since July, shortly after I found out I was pregnant. I journalled for all of our babies and found it a beautiful way to connect to what was happening. Each pregnancy was different. Daniel's was my first and everything was so magically new. Zachary's was full of being so sick and the stress of moving to a new house and yet I was awed to find out that it was all still magical, that each milestone and movement amazed me. Jacob's was my last - or at least I thought so - and I relished each moment as much as I could while chasing my 3 and 1 year olds around.

This baby has been magical in ways I would never have expected and, to be honest, in ways I would never have invited. From the moment I found out I was pregnant, I felt anxious and hesitant. I chalked it up to the fact that this pregnancy was unanticipated and I needed to adjust. We had done away with diapers and sippy cups and bibs. We were camping and hiking and taking on a new stage of family life with our three boys. Could I handle going back to baby days at 41 years of age? Could I even handle the pregnancy itself with all of its illness and aches? Chris was elated and entirely unafraid. I rode on his delight and his assurance that everything would be okay.

I was confident that I would hold onto my life throughout this pregnancy. I was running 20 to 30 kms a week when I got pregnant. I googled "running and pregnancy" and got some tips: don't overheat, slow your pace, listen to your body... I could do this. So I wouldn't run the Las Vegas Half Marathon in December. I was going to be healthy and fit. I ran that Sunday morning and my running partner, a nurse, doused me with water from time to time so that I didn't get too hot. This would work! A few days later I had to leave the class I was teaching at the university to throw up. I made it through the week of teaching and finished my marking for the course, then collapsed. My insistence on running failed each Sunday morning when I found myself glued to my pillow.

At 8 weeks gestation, anxiety overwhelmed me. I was dreaming at night that the baby had died or that something was terribly wrong. I went to the doctor and asked her to please trust my mother's intuition. She did and we went for an ultrasound the next day. There was our tiny baby with heart beating and limbs moving. I cried with relief. My dedication to this little being was solid now. I knew that I wanted this baby, that I was already hopelessly in love. I would be a mother of four. Sometimes God's gifts are unexpected. But my family is full of love; of course there was room for one more.

I was welcoming the end of the first trimester with all of its sickness and exhaustion. I had spent much of the summer in bed, unable to enjoy my children or our one brave camping excursion to B.C.. We went for the screening ultrasound as we had done in my previous pregnancies. This time, the news was not reassuring. The complex combination of the neuchal fold measurements, my preliminary blood work, and other risk factors, indicated that something was wrong with our baby. Some possibilities were tossed out but they wouldn't know until we did more testing the following week.

The days in between were the start of a very long roller coaster ride. I would reassure myself that everything was actually okay, that we were one of the inevitable false positives. Then I would find the fear overtaking me and I would cry and fall into desperate bargains with God; I would be so so good forever if only our baby could be okay. Please. Then I would allow myself to contemplate parenting a child with disabilities and the power of the love and strength in my family would seem like maybe enough... but maybe not.

I ached. Everything had changed. There was a family reunion that weekend and I was afraid to go, afraid that people would ask me if I was pregnant and I would fall to pieces. I dressed carefully to hide my rounding belly. I spent the hours surrounded by my aunts and uncles, my dear cousins and our many children, pretending that I was not feeling ill and heavy-hearted. The next day, the nausea of the first trimester lifted at last. The start of another kind of struggle had begun.