Monday, November 21, 2011

Statistics can kiss my ass

I am so sick of statistics. Once you've been on the losing side of statistics they really don't mean much. People that have never (or hardly ever) been on the losing side take comfort in statistics. "The chances of x happening are only 0.1%" Oh phawoo, we don't have to worry then! But once you've been that slim chance, you just have this dreadful feeling deep down that that slim chance will most likely happen to you. Why wouldn't it? Bad things happen to good people.

It's getting a bit ridiculous now tho. For the most part I am lucky. My two kids are healthy (for the most part) and happy. We have made changes in our lives that will allow us to live more comfortably and with less stress. We have great family and friends that love and support us. Our lives are good.

But really? Seriously? For a while I'd like to just be on the good side. The side that doesn't involve dread and sick feelings when you hear the word "percentage" or "chance" or "don't worry". I want to hear a doctor say that it's most likely not x, and actually believe them. Not think "Ha, we'll prove them wrong now won't we?" I want the good luck. I'm sick of being rare, unlikely, 'the special case', the slim chance. I just want normal.

I was recently reading over the medical records I received for myself and the three kids. Recent health news caused me to pull them out again, searching for numbers, facts, notes. It all just made me mad. Well, maybe not mad (some stuff definitely made me mad) but more annoyed or frustrated. Every kid we have had has had at least one 'slim chance' happen to them. At least one. At least. And the oldest kid is only four! In four years we've had countless numbers of slim chances, special cases, unlikeliness. BAH!!!

I won't get into all the past rare-case, slim-chance, unlikely things we've had the misfortune to prove the doctors wrong on. I'm not complaining. I don't mean this as a whoa is me type of post. I know we're lucky. We are lucky to have two bundles of energy and joy in our lives. We are lucky to have money coming in, love in our lives, a roof over our heads. Even tho we've had all these misfortunes I wouldn't change much. It makes us who we are, who our kids are. Whatever doesn't kill you makes you stronger, and all that. (although I do sort of hate that cliche right now, since one of the rare-cases did actually kill a little bean I love very much). I am merely venting since we've recently had yet another rare-case diagnosis.

This time it's Lexi. Or rather, this time it is Lexi again. As a baby she had silent reflux (like normal reflux only she never spat up, instead she swallowed it back down, burned on the way up and burned on the way down). Silent reflux is fairly rare; none of our regular doctors even knew what it was. We got a referral to our pediatrician who immediately recognized it as a milk-protein allergy (reflux+eczema+irritability+diarrhea). She outgrew this by the time she was about 15 months (whoo hoo!). Statistics say that 2-3% of babies in developed countries will have a milk-protein allergy. So she outgrew that around January 2011, becoming 'normal'; not one of the 2-3% of kids with a medical diagnosis. Phawoo. Then in the beginning of March she became constipated. A few medical professionals told us it may be a milk allergy or sensitivity (to which I replied "you bite your tongue!"). Nothing worked with the constipation. She's been on laxatives, in one dose or another, for the last 7 months, before that we tried dietary changes. Nothing has been working. Every couple of days she would be in immense pain as she tried to do one of the most basic bodily functions. It just was not right. Then lately we were slightly concerned about her size since she is very big for her age and has drastically moved up on the growth charts, not even staying on any sort of curve. Add to that the fact that she often will just lay down on the floor with her blankie. At first I thought she was just taking a break to snuggle with her most loved possession. Then I started thinking it may be a little odd. So off we went to the pediatrician.

Turns out the constipation, paired with the growth, paired with the fatigue triggered some red flags with our doctor and she sent Lexi for some blood work. After 3 vials of blood were taken and analyzed we have found out that Lexi has Acquired Hypothyroidism. So we're back to the rare case. Hypothyroidism affects about 3% of the general population. And of that the majority are older adults, it is fairly uncommon in children. So what does this mean for Lexi? It means daily medication. It means routine blood work to check her hormone levels. It means a very real possibility of a lifetime of medication and blood work. There is a chance that she could outgrow it in the next few years. It's unlikely, but there is a chance. Please let this be our rare, unlikely, slim chance. So far she's outgrown her silent reflux and her milk-protein allergy. Let's hope she does it again. Let's be on the winning side of the statistics. Please?

Thursday, November 10, 2011

Happy Birthday Little Man


This is how it should be: You should be waking up tomorrow to find the bathroom mirror decorated with drawings of everything you love. You should be having pancakes, or french toast, or bacon and eggs, or Lucky Charms; whatever is your most favorite breakfast. You should be beaming with excitement as you pick your favorite outfit to wear on this day, your day, your special day. You should be planning out what we do today, thinking of all the most fun things you can imagine. We should be planning your birthday party, which would probably be on Saturday or Sunday instead so that we can spend this day, your day, as just a family doing whatever your little heart desires. We should have your favorite dinner and eat a cake that I slaved over to make perfect for you. You should be blowing out the candles and making a great big three year old wish. You should be eagerly ripping into the paper that is hiding the present that we picked out specially for you from a list I'm sure you would have told us. You should be getting extra hugs, cuddles and kisses on this day, your day. And it would have been an extra special day since this year all your numbers match. Today, your birthday, is 11/11/11. All number 1's. We would have played up on that big time.

But it will not be like that. There will be no special breakfast, who knows what would have been your favorite, you never got a chance to find out. There will be no favorite outfit, you never got to wear any clothes we bought for you. You are not here to tell us what is the most fun thing to do. You never got a chance to make any friends, so there will be no party. I cannot make you a cake, it's just too hard to make one without imagining what should be. There is no favorite dinner, no presents, no list of favorites. There is no you. And, baby boy, I am so sad about that. Three years have passed and this year is just as hard as every one before it. I miss you. I miss you so much. I don't want other people here on this day, your day. I want you here. I want to feel your weight. I want to kiss your sweet forehead, touch your beautiful dark hair. I want to tell you I love you. I want to just be with you, be happy with you. I want to hear you laugh. Hear you call me Mommy. See you smile and hold my hand. I want to know you as a three year old, not just have to imagine it.

I don't want to be sad on your birthday honeybun. I want to think of you with a smile. Think about how happy you made me, how much you changed me, all the good you have caused in this world. I don't want to be sad when I think about you. But this year I'm just sad. You are the missing piece of our family. The missing piece of my heart.

But I'll try to be happy. Your brother is so excited about your birthday. He was excited all week to give up the little treats we made for everyone to tell them about you. He is so excited to celebrate your birthday, to have your cake and blow out your candles. He knows who you are. He says he misses you and loves you. I don't think he really understands fully, but he knows how special you are. One day he'll fully understand. So will your baby sister. If I had my way every single person I meet will know who you are. And that makes me sad again. They shouldn't have to know of you, or know who you were. I so desperately want everyone to know you. Know the little three year old spitfire that I'm sure you would be.

I love you. I always will. Not a day goes by that you are not in my thoughts. Not a second goes by that you are not in my heart.

With more love than I ever thought possible,

Tuesday, November 8, 2011

Random Acts of Kindness

This Friday, November 11th 2011, should be Benjamin's third birthday. I cannot believe it has been three years since I held my beautiful baby boy for the first and last time. Three years. So much has changed in the last three years, but one thing has stayed constant; my love for him. Not a day goes by that I do not think about him. A while ago I was chatting with a friend and somehow the topic turned to Benjamin. My friend commented that every time I talk about him I subconsciously start playing with my necklace. Since her comment I have noticed that I do, in fact, do that. My necklace has become such an important part of me. Jackson and Lexi know that it is special to me and that it, somehow, is special to Benjamin. They both play with it a lot. It makes me happy that, even though they don't realize it, every time they touch my necklace they are connecting with Benjamin.

Anyways, that was off topic! Once again this year I am asking everyone to do a random act of kindness on Benjamin's birthday, in his honour. It can be a small act or a large act. An act toward someone you know or someone you don't know. It can be a monetary gesture or free kind gesture. I don't care what you do, as long as you somehow make another person's life a little easier or happier for even just a second. As long as you make someone smile in Benjamin's honour it will make this difficult day a little easier for my little family. The fact that we cannot see Benjamin's sweet little face break out into a giant smile as he celebrates his special day is hard for us. Not being able to watch him blow out the candles on his cake, a cake that he requested and I spent hours slaving over to make it perfect for him. Not being able to hear him squeal with delight over the present that we had agonized over before finally deciding on. Not being able to watch him run around the room hopped up on the excitement of being the center of attention for an entire day. Not being able to give him a giant squishy hug and kiss as his last night as a two year old and on the morning of his first day as a three year old. All these things make this day heartbreaking. But we are able to spend the day with moments of happiness as we get emails, texts or messages from friends and family who have done acts of kindness to others on Benjamin's birthday.

So all I ask is that you do an act of kindness to others this Friday. Then let me know what it was. I am keeping a list each year. This is the first year that I will share the list with Jackson. He 'gets it' this year. He understands who Benjamin was, what he means to all of us, that he has died and that we celebrate his birthday in his honour since we love and miss him. He understands that we are asking people to do things for other people to make them smile. That we are doing it for his baby brother.

Monday, November 7, 2011

Just a quick statistical blurb

This really surprised me.

The year Benjamin was born there were 44,707 babies born in British Columbia. Of those 431 were stillborn (20+ weeks gestation); only 1% of pregnancies in BC in 2008 had such a tragic ending. Of these 431 stillborn babies, 127 were ‘late gestational losses’; babies that were stillborn at greater than 28 weeks. That means that Benjamin was one of only 0.3% of babies lost at this age. Point three. Seems small. But that is seven full kindergarten classes (average class size for 2010/11 was 18 kids per class). Seven full classes. Suddenly 0.3% doesn’t seem so small.

It amazes me now that people believe it will not happen to them; their baby will be born okay. And chances are good that that will be true. But now I know better. I can never be one of those wonderfully naive pregnant women. Because I know that to be one of the families who it does happen to is to live an unimaginable horror. You should never outlive your child. You should never hold your 6 pound, 3 ounce baby boy and know the only life he had was when he was cradled in your belly. People do not talk about Stillbirth; about babies dying. It is sad. Believe me, I know that. But the thing that is sadder is that no one wants to talk about it. My baby died. I will never get to be a proud mommy beaming at him over his accomplishments; hearing people tell me what a fantastic little boy he is. I never get to talk about him because to talk about him is to talk about a silent topic; a topic people would rather avoid. Most other bereaved parents I know want to talk about their babies. We want to be able to tell people how beautiful they were. How cherished they are. How loved they will be forever. We want to be able to include them in the ‘how many children do you have’ answer. Every time I have to say I have just two children a little piece of my heart breaks. It is true. I do only have two children. But I have had three babies. I have had three amazing little beings that take my breath away every time I think about them. Sadly only two of them are in my arms every day. But all three are in my heart every day.

Monday, October 24, 2011

Yes, it's been a while...

I'm still here. Still in the same town. We didn't move. Instead my husband got a job miles away from us and commutes back and forth (and by that I mean he's home a few days here and there). So far it's been working out pretty well. We've been doing this for about 6 weeks now and I think we are finally finding our groove with it.

So I didn't have to worry about what to do about the Benjamin Boxes or the support group. I'm still doing both of them. As much as I did before anyway. The support group still meets somewhat regularly, but now we don't have our location (it was at our business) so we've met at local coffee shops. This is fine for the core group, but if we get new members it isn't exactly ideal.

Now onto my dilemma... Every year for Benjamin's birthday we ask everyone to do a Random Act of Kindness in his memory. We also designate the day a Family Day. We don't answer the phone, avoid email, and just spend the day together as a family. We do fun things and get a cake that we eat with our hands. It's a nice day; full of love and mostly happiness. Sounds nice right? Well this year Brian won't be home for it. He isn't able to get time off from his new job to come home. So this year it will just be me and the kids. I'm having a hard time with that. I'm trying to decide the best way to plan for this day. I've found in the past that it's the lead up to the actual day that is the hardest. Once the day is here it goes by fairly well (notice I did not say 'easily'), but the days/weeks leading up to it are full of apprehension for how the day will be. I worry that I will spend the day crying and wanting Brian there to help me remember Benjamin in a happy way. I worry that I will not be able to make the day a celebration of his short life but will instead be consumed with sadness over the life he did not get to live. I worry that I won't be able to keep it together alone for Jackson and Lexi. I've had friends offer to spend the day with us, or to take the kids for the day but I'm just not sure what I want. I don't want to be away from the kids that day; I don't want to be alone. I'm not sure if I want other people here. I don't know if I want to spend the day with people that didn't know him. But the only other people that knew him were Brian, my parents and my mother-in-law. And they don't live near here.

So I'm trying to decide if I want to just continue as we have in the past, only without Brian here. Or to totally shake things up and do something totally different. I'm debating having a small celebration. A birthday party of sorts. Like a playdate with cake. I would ask everyone to bring a baby item to donate (either to the food bank or to a local shelter). It would be a small affair with only people who honestly know who Benjamin was, not just know that he is part of my past. People who will help me celebrate his life and how much he changed our world.


Sunday, July 24, 2011

Holy Stress!!

So, big changes are in store over in our little household. We are currently in the process of turning our lives upside down. What's going on, you ask? Well, let me tell you...

1. We are selling our business. We have owned our own business for the last 5 years but have now decided to sell it. The sale is almost finalized (phawoo!).

2. Our house is up for sale. Wish us luck that we are able to sell it in the time frame we need and for a price that isn't too depressing.

3. We are up and moving from British Columbia to Ontario. We used to live in Ontario but moved out west 6 years ago. We love it here but it just makes sense to move back to Ontario. Both sides of our family live there, houses are cheaper, cost of living is cheaper, etc. We'll miss our wonderful friends here and the gorgeous surroundings and climate, but we've got to do what is 'best' for our little family. (Trust me, this took some getting used to the idea!).

So what does all this mean for me in respect to Benjamin? Well, it's weird. I didn't think it would be all that hard. It's not like we buried him here or spread any ashes or anything. His ashes are still in a little box by our bed (apart from what is in my necklace). There is no specific place that I go to to think about him. No place in town that I overly associate with him. So, yeah, I thought it wouldn't be all that hard. I was wrong.

I was driving home from work one night shortly after we made all these decisions and just started bawling. Why is it that the tears come so freely when you are driving alone in the car? I started thinking about how excited we were when we started this business, how we had all these dreams and expectations of how the business would grow. And now it was ending (for us anyways). It was like a death of a child in a sense. We started this business roughly at the same time that I got pregnant with Jackson (okay, not 'roughly', it was basically the same month) so this business was like our first child. Sounds corny, yes, but on that night it just felt like I was going through another death of a loved one. And all it made me do was think about Benjamin.

That brought up all the issues that the move will create with Benjamin and his what I have done in his memory. The support group, the Benjamin Boxes, the friends here that have helped me through the dark days and helped me celebrate the good days. How can I just stop all of that? But how can I continue it in a province that he wasn't even born in? It just doesn't seem right. I've had a few weeks to figure some things out and here's what I've come up with.

The Support group - I have talked to the regular members and they have agreed to keep the group going. Currently it is held in the conference room at my business so they'll have to find a new location. But they are definitely continuing it so that makes me feel better.

Benjamin Boxes - I have made a few more and dropped them off. I will be putting together as many as I can before I move (oh yeah, this move will most likely be in September/October, lol!). My hope is that I can supply them with enough boxes to last at least the rest of the year (hopefully more). I have also talked to a few of the members of my support group and one of them may be willing to take over the boxes for me. When I get to Ontario I may look into offering them at the local hospital there but it depends on what services they already offer to bereaved families. I will still stay involved in Benjamin Boxes, but someone else will become the contact for them.

I have received many generous donations for Benjamin Boxes. The contents of the boxes are mainly donated so I have more money than I need for boxes at the moment. I wanted to donate something else to the room, besides just the boxes. I spoke with the social workers at the hospital and we came up with a donation that I am very pleased with. I will be donating a digital camera, printer, ink, photo paper, and SD cards. The idea is that the social workers will take photos of the babies and then print out one photo for the families to have immediately and be given an SD card with the rest of the images so that they can print off more photos if they wish. The social workers will also be able to allow the families to use the camera while they are there to capture any images they want. Currently the babies are photographed by Media Services and the families are given one photo. The families also have the option of having Now I Lay Me Down To Sleep (volunteer organization that takes beautiful professional photos, like all the photos I have on this site). But by giving the families a camera they are free to take any photos they wish. For instance, I wish I had full body shots of Benjamin undressed. I hate that I can't remember every inch of his body. I can't remember what his thighs looked like, what his belly looked like, his little baby bum, etc. I want other families to have the option to 'remember' every spot on their little ones. I have already purchased the printer and we have lots of paper from our business. Now I have to decide on a camera.

As for my friends that have helped me through this? I will keep this site going (ha, not hard at the rate I've been posting!) and every year I will continue to do a Random Act of Kindness Day in Benjamin's memory. I may be thousands of kilometers away, but what's a couple kilometers among friends when you've got access to the internet?

One thing I have a bit of a hard time about is that this house, this town, this city are where I was pregnant with Benjamin. Where all of our dreams for him were born. Where we looked with excitement and joy on his upcoming birth. It's also where we found out he had died and had to come to terms with that. But it's also where he was born. Where we first got to see him, hold him, kiss him. When we move I won't have any physical reminders of him. I won't pass by the field that was ablaze with daisies when I was pregnant with him. I won't see my friend whose daughter is almost the exact age as Benjamin should be. I won't go to the hospital where he was born. I won't see people who knew him, who held him and touched him and know how beautiful and perfect he was. When I move any friends I make will only know of him as a distant memory. Something that happened to me long before they knew me. He'll just be an idea. Here they saw him growing in my belly, saw my ultrasound photos, held my hand and comforted me when he was born, marveled at how perfect he was in his photos, and they were there to cry with me over the unfairness of his death. They knew him. And even though he wasn't born alive he lives on in each of them. It'll be impossible to get that with a new group of friends. People who haven't lost a baby just don't understand. They usually think that it is something that time heals. I had a baby but he died before birth, three years ago. Three years is a long time. And I've had another child since. Therefore I must be okay. It must not hurt my heart still. After all, I have the millionaires family. I have my boy and girl. Why would my heart hurt?

So that's what's new with me...

Thursday, March 10, 2011

Autopsy report

I requested all my hospital records for all three births. I also requested all the records for all three babies. Including the autopsy report for Benjamin. I just wanted some answers I had surrounding all three labour, deliveries, and hospital stays. I got them last week.

So now I have all the answers I will ever have regarding Benjamin's birth and death. I have the clinical reason for his death. I have details on his body. I have everything. And yet I have less. I now know his eyes were brown (he was born with them closed). I now know he died from "fetal thrombotic vasculopathy, the thrombus in the umbilical vein, and the pulmonary thromboembolic infarction of the right lower lobe of the lung". (yes, I have googled those).

BUT the report could not figure out how 'old' he was! Going by my original due date (the one I always believed to be true) he was born at 36 weeks, 6 days. Going by my adjusted due date from an ultrasound at 10 weeks he was born at 34 weeks, 6 days. Okay. So he was either almost 35 weeks or almost 37 weeks. I can live with that discrepancy. Then when he was born based on his weight and length they concluded that the original due date was correct and he was 36w6d.

Okay, a firm answer... Not so much. Based on findings from the autopsy report his weight was consistent with 38-39 weeks. His lengths (bone lengths, crown to heel and crown to rump lengths) he was consistent with 38-40 weeks. Based on his head circumference he was 40 weeks (but my kids have big noggins, so I'm not putting much weight in that one). But then his foot length indicated 36 weeks. Okay. So going by his body sizes he was anywhere from 36-40 weeks. Okay, those can't be all that accurate, so we'll stick with the 36w6d gestational age and just assume he was going to be a big baby.

BUT then the
'placental weight' indicated 33-34 weeks gestation. WTH?? How can the placental 'age' be 33-34 weeks, but the baby be 36-40 weeks? How can they not know how old he was? And not just by a few days, or even a few weeks, but by five to seven weeks?? That's almost two months!

The report actually states "In addition, there is a discrepancy between body measurements which correspond to a later gestation of 38-39 weeks gestation, and the placental weight, which corresponds to 33-34 weeks gestation." So they state this, but give no indication if this means anything. Does this have anything to do with his death? Can the fact that he was 'older' than the placenta mean that something was wrong and his body was working too hard? Could that have somehow caused the blood clots? If I had gone for more monitoring would they have seen this 'discrepancy' and been able to do something? If they'd seen that he was measuring 5-6 weeks bigger than they believed him to be would they have intervened somehow? Could he have been saved?

See, I have less. Now I am just confused. And, I'll be honest, a tad angry. Not at anyone in particular; no one could have known that he was going to die. No one could have known that he was growing so big. Just angry though. Angry that my baby had to have an autopsy. Angry that someone else knows his body better than me. Angry that he was taken apart and put back together again. Angry that there is that small smidgen of possibility that all of this could have been avoided. Just angry.

Thursday, March 3, 2011


I was at a discussion group the other day where about a dozen parents were sitting around waiting for a guest speaker to start. We had just done introductions and one lady introduced herself and told us that she was 36 weeks pregnant. I asked her if she knew whether she was having a boy or a girl. She answered that she did not and hadn't known with her first child either, but she had just known that the baby was a girl. I asked if she had any feelings about this baby. She replied that she did not, but that her daughter was absolutely convinced it was going to be a girl. She even had decided on a name. I asked what the name was. She replied "Daisy".

She must now think I'm a moron. I had been just chatting away with her all friendly and intersted in her life but as soon as she said this I immediately looked away and avoided eye contact with her for the next 15 minutes for fear of bursting into tears. A little hard to avoid eye contact since she was the guest speaker.