Oh October!

Oh October...I had such plans for you.

These 'plans' hark back to February when we thought "things might be okay" with our little baby. At the time, I knew the baby would be early and was likely to be born in July due to my heart condition...I had hoped no earlier than mid-July-ish (HA!). I thought we might spend the rest of the summer and maybe into September getting used to middle of the night feedings, possible colic, lack of sleep, and recovering my strength after giving birth.

But I had plans for October. By October I thought, I should be feeling more myself. I should be used to breastfeeding. The baby will hopefully be into a routine and might even be sleeping better by then.

October was going to be our month. Our month to take long stroller rides through the falling leaves. To visit Brian's family out of town and introduce them all to the new baby. To take pictures at the apple orchard and the pumpkin patch, surrounded by all the other families with kids. To shop at ridiculously high priced farmers markets with my baby sleeping in a sling. To have Thanksgiving and my Birthday all rolled into one day of happiness and family and love. To dress my baby in a ridiculously cute costume to enhance his (or her, in February I didn't know Aidan was a he) already legendary cuteness.

God damn it...I want that October back.

I want my baby back.

I miss you Aidan...my little pumpkin. Know that I had plans for you. Wish we could be together, enjoying them.

RE

I had my first visit with the RE yesterday (RE=reproductive endocrinologist for all of you out there who have not needed help getting knocked up).

It was...somewhat better than I expected, but still kind of a disturbing experience.

I arrived at the building almost half an hour early. I went by myself since Brian didn't want to take a day off work just to go to a consult appointment. I was okay with this...but still it would have been nice to have some company.

So, I get off the elevator and walk up to the check-in desk and immediately my Canadian nursing brain is thinking "so this is what paying for your medical care looks like". Things are all white and chrome and leather and glass and expensive looking. Humm.... I'm a staunch supporter of publicly supported medical care so my inner voice is balking at all this extravagance. But whatever...I'm here to get pregnant and at this point I would mortgage my soul to have a healthy baby, so I suck it up and get on with it.

So, I find myself sitting in their waiting room on one of their (completely unnecessary) posh leather couches (which aren't nearly as comfortable as their price tag would appear), and as I look around at the other patients I'm having a few thoughts.

Thought # 1) Wow...I must be the youngest person here by a good 7 or 8 years...I feel so out of place and my grubby work running shoes aren't helping.

Thought #2) I wonder if any of these people have a dead baby (or two or three) in their past?

Thought # 3) Huh...all of these people are having trouble getting what they want out of sex. How sad.

Thought #4) All of these people are paying to have children...something so many other people do for FREE...damn this world is unfair....

Thought # 5) What's the protocol in these waiting rooms? Is striking up a conversation with someone else while waiting a No-No? "So...why are you here? Oh your husband has a sperm count just shy of zero and your eggs are aging by the second...how nice...want to see pictures of my dead son? He was my first and only fertility failure so far. Nice weather we've been having, isn't it?"

And then my name was called...

The appointment itself was pretty standard. The fellow (the doctor in training who does all the grunt work of interviewing the patient and taking the medical history) goes over all my gynecological history (yawn) and fertility history (action packed, with a side of drama and gore). She was REALLY compassionate and nice about my poor little dead Aidan which I was extremely grateful for. I was easily able to answer all the questions she asked (probably in more detail than she wanted), since I'm kind of anal retentive about my health that way (yes the first time the subchorionic hemorrhage was discovered it measured 2.1cm x 1.7cm x 0.9cm...would you care for a diagram?)

Then she states that based on my medical history she doesn't see us having any problems getting pregnant again, and if we want to do so quickly she would be happy to offer us IUI (Intrauterine insemination, AKA artificial insemination) anytime we want (to the tune of $675 a pop!). She discounts all of the spotting that I have prior to my periods and says that "oh, we don't usually worry about spotting" (I think I will bring this up again at my next appointment because it's what REALLY REALLY concerns me). Any who...at this point we are going to run some tests and get blood work from me and hubby and proceed from there. If things come back normal, we'll try on our own for awhile. If they come back wonky then we'll have to re-evaluate. One of those tests will be the Sonohysterogram for me (yeah! Pictures of my insides...can I get one framed??!) and the ole' sperm in a jar for the hubby (his test sounds like a hell of a lot more fun...mine involves antibiotics and Advil).

But...on the serious side...the RE did tell me that she doesn't think any added Progesterone would have saved Aidan. On the one hand, I REALLY REALLY want to believe this. It would mean that I couldn't have done anything different, it was a fluke, a terrible tragedy that no one could have for seen. His placenta was defective, causing bleeding, causing pPROM, causing lack of lung development, causing death. The end. On the other hand, I wish there was something new and different that could be added 'the next time'. I'm so terrified that there is something wrong with me that will screw up the next baby attempt.

Her parting words to me were "We'll get these tests done, and then we'll get you pregnant".

Thought # 1) Ha! I bet you say that to all the girls. I'll believe it when I see it, thanks.

Thought # 2) Um...I'd really prefer that my husband get me pregnant...but thanks for the offer.

Thought # 3) Great...but what I really want is a baby. Pregnant is only the first step in a long, long process. *Sigh*.

Oh, Aidan...if only you were here...life would be so different.

Have you had to consider (or tried) medical intervention to get pregnant? Is it as uphill as it looks from the start? Did it make you feel hopeful or depressed? Is it weird that it's making me feel like more of a failure?

Reflecting on dead baby math

Um (peaks around the corner), hi...

So....

I'm at 25 comments and counting on my last post.

Apparently dead baby math evokes some strong feelings in people since it's my highest commented post ever (by a lot).

Thanks for not flaming me.

By my previous post I did not at all mean to imply that if you have older children or have subsequent children, that somehow the dead baby is rendered irrelevant. He or she is never irrelevant. Ever. No matter what. I think I will struggle with this within my only family when (if?) Brian and I ever have another child. I think our families will be so 'thrilled!' and 'stoked!' to find out we are pregnant again, that they will want to seem overly positive. We will likely get comments to the tune of "this one is going to turn out okay, I can just feel it" or "see, I knew it would happen for you!" or some other irritatingly cheerful bullshit. I will nod and smile, because really, I hope those things too.

But inside I will be FUMING for Aidan. The next baby is just that...the NEXT baby...it is not an Aidan replacement. Another child does not make his loss "okay"...but it would make us parents, and not *just* a (babylost) Mom and Dad.

If I cannot have Aidan I will be eternally grateful for any subsequent living healthy children, but it will not mean I miss him any less.

My anger and resentment to those who have other children or an easy time getting pregnant is completely a reflection of where I'm at right now. As we are nearing Halloween and cute costumed baby and child pictures are cropping up, I wonder if I will ever get to do that with my child. As pregnancy after pregnancy, after healthy baby delivery gets announced at work, within my family, on facebook, in the media, and between friends...I ache to know that feels like...even if it can't be with Aidan. I want to be a participant and not just a spectator.

We are nearing the end of cycle 5 after Aidan and while my boobs are slightly sore and I *might* have had a slight twinge of nausea...I find it trying to keep up the constant hope that "maybe this cycle will be it!" and expect to get a healthy baby in 9 months. Having had no experience with a healthy, normal pregnancy I flash to miscarriages, pPROM, prolapsed cords, genetic defects, asphyxiated deliveries and all the other multiple horrors that can occur. To actually get a healthy, living baby seems like the miracle, not the norm.

I just wish my dead baby math stood at zero.

Dead baby math

Okay, I hope people don't hate me for this post.

As much as I love connecting with other babylost moms on the internet, (and don't for one moment take this post to mean I don't want to hear from you), sometimes hearing all those stories of death and sadness...well it just gets me down. I'm also starting to really get upset at myself for a reaction that I have to each and every story...

My reaction after reading about each baby death now seems to include a rating system. The story is either "worse than mine", "better than mine" or "about equal". In math terms this looks like ">", "<" or "=".

I KNOW! I KNOW! No baby death, no matter how early, no matter how many living healthy children you have, is any less sad. All are equally loved and wanted and it's always tragic no matter what. My heart knows this...but my brain still wants to assign <,> or = to each one.

I feel weighed down by the story of the mom who has had multiple miscarriages and one still birth. I mean really? No one deserves that kind of pain. How the hell does she get up every morning? I feel so much sadness and empathy for this family whose heart has been broken over and over...but mostly I'm terrified that my life could become hers. One baby death is enough for a lifetime...I'm literally crushed under the thought of more. The losses this type of woman has faced always rates a > sign in my dead baby math.

More losses + more heartbreak spaced out over many years > than my one loss.

But then I read the story of the mom who has two living healthy children, then has a miscarriage at 6 weeks, then goes on to have another healthy pregnancy 3 months later. And I hate that I do this, but the whole time she's pouring out her pain into cyberspace I'm thinking "I would trade places with you in an instant".

Early loss + living healthy children + healthy subsequent pregnancy < my loss.

Other types of losses that are similar to mine, either gestationally, or because the person took awhile to get pregnant and is afraid another one won't come along, or because it was their first child tend to get an = sign. These are the mommies I generally feel closest to.

So, there you have it. Am I complete and utter bitch? Is my dead baby rating system a sign that I'm really starting to lose it? Do other people do this?

Do other people do this?

6 months and a sliver of hope

Today is 6 months since Aidan left my body and died 54 minutes later in my husband's arms.

Half a year.

Sometimes it feels so long ago...other times it feels like yesterday. I was going to try to finish off Aidan's birth story in honour of his 6 months 'dirthday'...but I just have been too sad lately. It will take a lot of effort to write down what those last few weeks with Aidan were like. They were so full of anxiety, fear and sadness, mixed with the knowledge that every day was one day closer to the possiblity that he *might* be okay. If he stayed in long enough...if we could just keep hanging on. If I just lay still enough, drank enough water and didn't do anything to upset this razor thin balance we were on, maybe I could keep him in long enough. Maybe long enough for a miracle to occur.

It didn't.

I'll get to that story, one day soon. I promise. I need a good few hours to sit down and write it all out.

But here, on October 21st, a teeny tiny stroke of good luck did ocur. I finally got the call to schedule my RE appointment. AND...even better, my appointment is only 6 days away!!!

I was afraid they were going to say something like "oh, we're booking into next year..." but the doctor happened to have a few extra slots for next week and someone must have picked me to get one (possibly the words DEAD BABY on my chart DID help me in this one instance). My appointment is for October 27th. Coincidentally, it will also be the earliest day that I could possible test to see if I'm pregnant already. I'm not holding out much hope of that (too good to be true)...but I suppose anything is possible. (Well...not anything...but you know what I mean).

Anyway, let's hope things go well. Let's hope Dr. Wonderful has some miraculous strokes of intuition into our problem. Let's hope she's positive and says good things about our chances for another (healthy) baby. Let's hope whatever treatment she thinks we might need isn't too terribly costly. Let's hope she doesn't make me feel bad about coming to see her well short of the one year of TTC that all REs seem to hold to. Let's just keep up hope shall we.

6 months later and we're still trying to keep hope alive.

How are you keeping hope alive? Does it elude you often? What makes you feel hopeful?

Half a Miracle

The unit that I am working on is a day procedure unit. I'm sure I've mentioned this before. Basically we function as a souped up doctor's office where kids (ages 0-18) come for procedures, treatments, IV medications, blood work and/or to be seen by the service they are covered under in the hospital (GI, Neurology, Rheumatology, Immunology, etc. etc.)

It covers a lot of areas of medicine I'm completely unfamiliar with. I could tell you all about premature baby physiology, how to care for a pre-op gastroschisis patient or how to set up for a nurse to insert a PICC line, but none of that is useful where I'm working. At times, it's frustrating to be so out of my element. On the other hand, I'm learning and seeing new things.

One of the more interesting patient populations that come to our unit is those who have had, or who might need, transplants. I think the general population has the idea that once someone receives a transplant then *poof* you are cured, and can get back to being 'healthy'. In reality, transplant patients have just traded one fatal condition for another condition that must be managed for the rest of their lives. Don't get me wrong, these patients are very grateful and happy about their new organs. One nurse I work with told me transplant patients often consider themselves to have two 'birthdays'. Their actual one, and the day they got their transplant.

But things don't always work out with the new organ. Sometimes, even with good matching and all the drug therapy available, the newly transplanted organs fail to work in the 'host' body and get rejected. I met one 8 month old baby the other day who has had not one, but TWO liver transplants. The first organ failed within a week and she ended up getting another organ which 'took'. She is really cute and looks almost completely normal. Probably most amazingly of all, I met a family the other day whose son has received a bowel, liver AND kidney transplant. That's most of his major organs. It kind of boggles the mind.

However, the follow up care for these patients is no joke. These patients will be medicated daily for life with anti-rejection drugs. In our unit we also often give these kids an IV infusion of immunoglobulin which helps to block the patient's own immune response to the new organ. All this immune suppressing can of course be a issue with the patient trying to fight off the pesky flus, colds and other bugs that our bodies deal with on a daily basis. It can also have other major consequences, such as the patient developing cancer. That's right, cancer. Cancer is an overgrowth of abnormal cells within the body, and the immune system plays a role in preventing their growth. Suppress the immune system and you've just upped your cancer risk. We have kids in the hospital who have died, not from the disease that was originally killing them that required them to get a new organ...but from the cancer that they got post-transplant from taking all the immune suppressing drugs that were keeping them from rejecting that lovely new organ.

Seems completely unfair doesn't it?

I've always been somewhat interested in transplant patients, not because I think they are medically interesting (although they are)...but because someday I'm afraid I'll need to be one. Although my heart is coping well, and has been since my 'major' surgery at the age of 6...I'm always afraid one day it will stop doing what I ask of it. Now my parents, my family, even my doctors have never really wanted to play the 'what if' game with me when it comes to my heart. I've always felt they have stuck with the opinion of 'you're doing really well right now...why worry about it?' (HAHAHAHA...have you MET ME??!! I am a WORLD CLASS worrier.)

Still. I do worry. Every day. It's always at the back of my mind. One time I tried to explain it to my husband. I told him it's like this:

Every day when I get off the subway at my stop there are two large flights of stairs that I have to climb. Probably about 50 stairs in total. Every time I'm at the bottom and look up, the thought goes through my head what if this is the time that I can't make it to the top without stopping to catch my breath? I think it every time. It's not even a clear thought anymore after all these years. It's just a single small stab of dread. And then I climb the stairs and continue on with my day. But I know, if the day comes when I cannot climb those stairs without stopping, then it's the beginning of the end for my heart. And what comes after, I do not know.

This all sounds incredibly ominous...but that's what it is to live with an organ that is not 'perfect'. I cannot escape that fact.

This all brings me to the real point of my story.

Last week, I was looking after a little girl who needed IV antibiotics for a fairly minor infection. Something any kid could end up with...but this girl wasn't a regular kid. She has, what probably I, and most cardiologist would agree, is the 'worst' kind of heart condition. Hypoplastic Left Heart Syndrome (HLHS). It is basically the mirror image of what my heart defect is. I am missing the right ventricle of the heart...she is missing the left. The left ventricle being 'more important' because it's the pump that circulates blood to your body, while the right is responsible for pumping the blood to your lungs. Surgeons have constructed my heart so that the blood is pumped all the way around my body AND to my lungs by only my single left ventricle. This, obviously for me works well. For a person who has to rely on the inherently weaker right ventricle to do the same job, well...it's a less than completely satisfactory situation.

I have been told by my former NICU veteran colleagues that if I had been born in the same year that I was, (1982) with HLHS...the doctors would have had a completely different plan for me. Their plan would have been no plan at all. They would have handed me back to my parents and said "take her home and enjoy her for as long as she lasts". There was no saving HLHS patients back in 1982.

So, to see this little girl running down the hallway the other day was pretty amazing. She was not however, completely 'well' looking. Her lips were blue-ish and her fingers were clubbed (a deformity of the fingers often associated with low oxygen saturation). For pictures see here. She has been admitted to hospital for issues in the past, and I'm sure she will be again.

She was however, smart, cute, funny and in school. She was as totally 'normal' as you could get while missing half a heart.

This (along with pretty much everything else these days), makes me think of Aidan. Before I got pregnant, I knew that due my own heart defect, my child has a slightly higher risk of having a heart defect too. The generally population averages about 1-2% of having a child with a heart defect. I, apparently have a 3-5%. The defect my child may have would not necessarily be the same as mine.

I remember thinking...okay, I could deal with that...just as long as it's not HLHS. Honestly, I'm not sure I would have continued with a pregnancy if it meant having a child with HLHS. Not because I wouldn't want to care for a child with that defect, or would be afraid of losing them due to it (which of course I would be)...but because I would not want them to have to cope with seeing that set of stairs and knowing they will not be able to climb it without stopping.

But seeing that little girl the other day made me think. She is happy, laughing, playing, goes to school, is loved by her family...but one day may face her heart wearing out, and a transplant, and maybe rejection of the organ or possible cancer related to the drugs...and the constant knowledge and fear that she will not make it to old age, or to having kids, or to graduating university, or to have a boyfriend (or girlfriend), and may never live away from home.

But my son, with his perfect heart, died. And she, with her damaged heart, runs down the hallway yelling 'Daddy, Mommy, watch me!'

It's like watching half a miracle.

Have you, or someone you are close to, ever coped with a 'life limiting' disease? How has it shaped your perceptions? Does modern medicine ever feel to you like 'half a miracle', where some are saved, but at what cost?

Awareness

It's October 15th. Pregnancy and Infant Loss Awareness Day. Coincidentally my due date was 2 months ago, exactly.

I went back to my FertiltyFriend.com August 2010 mommies board today, just to see what life 'could have been' like. They are all posting about not sleeping, breastfeeding, cloth diapering vs. disposables, etc etc. I fell off the wagon when it was back at the "What are you having?? and "How many kicks are you feeling each day?" postings. It feels like a lifetime ago.

Things have diverged so much from what we had hoped. It is hard to even imagine what life would have been like had Aidan lived. What would his room look like? Right now it's almost completely empty. How much sleep would I be getting? Last night I slept for 7 hours straight. What size clothes would I be in? Currently still fit in the same size I've been for years. Most wistfully of all...what would Aidan feel like in my arms?

I can only imagine it would feel like heaven.

I miss you my baby boy. I don't need a special day to remember you. You are with me always.

How are you 'celebrating' today?

Birthday present for myself

This is what I got myself for my birthday. Thanks to Dreaming Tree Creations.

Have you bought anything to carry with you that reminds you of your dead baby? Have others commented? What do you tell them about this special token?

28

It's after midnight. It's October 11th. I'm offically 28 years old, although I actually didn't slide through the birth canal until 12:35am.

It's also Thanksgiving here in Canada. For all you Americans out there, Canadian Thanksgiving falls on the 2nd Monday of October. I was actually born on Thanksgiving day (Monday) in 1982. So this year, my birthday being a Monday falls on Thanksgiving day.

I wish I felt more thankful this year.

I wish I had my beautiful, healthy, alive, 2 month old son to be thankful for.

I wish I wasn't so sad.

I wish, I wish, I wish...

Just holding on

Nothing new happening around here. Still not pregnant. Still waiting for the hopefully fruitful RE consult. (Where we get to discuss Aidan and his tragic circumstances with yet a new set of doctors...oh joy!). The date for this appointment is still not set.

But, in the meantime, I'm starting to feel more beaten. More broken. More sad. More hopeless.

When I think about all that my husband and I have had to live through in the last year and a half, I cry. I cry for us. I want to pat myself and my husband on the head and whisper "oh you poor, poor dears" like some old English granny. Really, I cannot quite convey how really awful it's been.

April 2009 until now looked like this: Stressing about getting pregnant. Taking longer than anticipated to get pregnant. Dealing with abnormal test results on both our parts. Then pregnant. Then possibly miscarrying. Then seeing a heartbeat. Then blood, blood and more blood. Then reassurances that things will be okay. Then bed rest and off work, and financial stress from that. Then bad news. Then really bad news. Then trying to hold on to hope for our baby. Then just living day to day, knowing it wouldn't end well. Then Aidan dies and it's all darkness and pain and sadness for weeks and months... Then feeling like I'm stuck back at the beginning of this paragraph all over again.

I'm sad that life has not been easy for us in the last year and a half. I know we have life a thousand times better than most people. I know that. I am grateful for that. But, that does not take away from the pain of knowing we have it a thousand times worse than others.

I try to be one of those "happiness is what you make it" kind of people. I do my best to adhere to the policy of "when life hands you lemons, make lemon aid"...but honestly, I'm too tired, too broken to do it right now. I don't want to make anything good out of this devastation. I don't want to have to work hard to overcome anything. I would trade all the life lessons in the world for my son back.

I just would like something GOOD to happen, you know? Something easy and wonderful. I'm tired. I'm tired of trying to hold it together, trying to keep my focus on the future. When things will be 'better'. I want 'better' to be soon...to be right now.

Just wake me when it's over.

How do you hold on to hope? What keeps you getting out of bed each day? Is it working?