Friday, May 29, 2009

How are babies made?

Obviously I know how a baby is made. But how is it possible for a perfect little baby to be born. Alive. With all it's limbs, fingers, toes, internal organs, etc. How is it possible for a baby to stay in the safe comforting womb for 9 months and then be born? Healthy? With no medical issues? It just blows my mind.

Ever since Benjamin was born I have spent some time on different grief support boards on the internet. It shocks and saddens me to read so many personal accounts of 'what should have been' turning into 'what should never happen'. There is so much sadness and so many young lives lost before they even truly began. It just doesn't make sense.

What amazes me more than the mind blowing number of losses is the fact that there are SO many healthy babies born. When I was pregnant with Benjamin I was a member on an expecting club on the internet. All these women were due in December too. On that board there were many women who left our group early in their pregnancies. You expect this. Any pregnant woman knows the rough estimates of early miscarriage. You know that almost a quarter of all known pregnancies will end in an early miscarriage. This knowledge does not make an early loss any less devastating and in fact it really increases the anxiety during the first critical couple weeks. On this particular board there were well over a hundred woman (I have no idea how many there really were, but it seemed like a ton!). By the beginning of January everyone had had their babies. Of all these women there was one baby that died very shortly after birth (Ruby), another that died three and a half days after birth (Bregan), and one stillborn (Benjamin). Way too many losses, but amazing to think that out of all these women there were *only* three babies that lost their lives too early. How the hell did so many babies make it?

There are so many things that can go wrong in a pregnancy. So many things that can go wrong during the labour and delivery. So many things that can go wrong in the days following birth. And then don't even get me started on the whole SIDS topic. It amazes me that Jackson has made it to 2 years (tomorrow!) with no lasting problems. How did we make it? Even though I know the odds are that a baby will be born healthy and living, it still feels like we defied the odds with him. Like we are lucky as all get-out that he is with us.

I had a doctor appointment the other day with a fill-in doctor and we got to talking about all my pregnancies. I told her about when Jackson was born and how he had severe jaundice and how the doctors thought it must have been a blood incompatibility issue for his bili levels to be that high. But then I had no antibodies, so it was rare that his levels got that high. Then with Benjamin dying from blood clots in his cord, with neither Brian nor I having blood clotting issues. So it was incredibly rare for that to have happened at all. Then with this baby having the cyst on it's brain. Not incredibly rare, but only 1-3% of all fetus' have them. You know, I'd really like a pregnancy that is normal. I'm not looking for rare cases and having 'special' pregnancies. Just a plain ole run of the mill pregnancy would suit me just fine thanks.

Wednesday, May 13, 2009

A difficult week

This week has been hard. Surprisingly hard.

Sunday was Mother's Day. I thought about Benjamin a lot, thought about how this is the first Mother's Day that I am a mother to two boys. Yet only one of them was there to celebrate it with me. To give me kisses and hugs. It just wasn't right. But it was still a good day. Brian and Jackson gave me a present for the day. It was a big Ficus Benjamina. A perfect gift for the day.

Monday was six months since Benjamin was born. The day hit me like a ton of bricks. I was fine for the morning but as the day wore on it just got harder and harder to resist crawling into bed and just crying the day away. I couldn't stop thinking about how our lives should have been that day. He should be perfecting sitting up, babbling at me with his chubby little face, grabbing at me with his chubby little hands. He should have been having his first taste of solid foods. I should have been taking his 6 month birthday photo. It just was not right that he was not here to do all the things. It's unreal to me that he has been gone for six months. Half a year. That is just too long. I can't believe I have made it this long without him. It surprises and slightly saddens me that I don't seem to mourn him as badly as I used to. I know it's 'normal' and I know it's healthy but it still just seems wrong somehow. Like I've moved on and put him in my past. And that's not true. He's still a big part of my life, a big part of my thoughts and he always will be. Time will never change that.

Tuesday I had my 'big ultrasound'. When the ultrasound technician started the scan she focused on checking my cervix and the placenta and all that. I immediately asked her to please first find the baby's heartbeat. I needed to see that first. A big part of me was terrified that the baby would not have a heartbeat. But s/he did and it was beating strong and healthy. Everything about the baby looks good except for one tiny issue. The baby has a cyst on the brain. Apparently it is quite common (1-3% of all fetus' have them) and not harmful at all. The only concern with them is that there is a slight correlation between these cysts and Trisomy 18 and 21. In most cases the cyst just disappears on it's own by the third trimester. I have my doctor appointment tomorrow so we'll go over this then. I will also be getting my blood screening tests back tomorrow which will tell me my odds of this baby having T18 or T21. And my gestational diabetes tests will also be back. It's going to be a full appointment.

Friday is Brian and my 5th anniversary. Five years. That's a long time and yet it feels like I have known and loved him for many more years than only five. We've been through so much and are such a stronger couple than I ever thought we would have to be. He knows just what to do when I am having a hard time. On Monday when I finally broke in the evening he just sat beside me and held me, letting me get his shirt soaked with tears and snot, lol! He didn't try to reason with me, didn't try to talk me down, just let me get it all out in my own time. Exactly what I needed him to do.

I also have another grief support group on Friday night. This is a group that Heather and I started. There is no support group for pregnancy and infant loss in our area. That amazed us and we felt there was such a need for one that we started it ourselves. We've had two meetings so far. The first meeting included the two of us and my friend that just lost her baby. The second meeting had the three of us and then another couple who lost their beautiful son to SIDS. This week we might have two new members. This is not the type of group that you think 'the more the merrier'. Every new member means that another baby has died. But I am so glad that we are all able to be there for each other. I know how alone a newly bereaved parent can feel.

So that's my week. Kinda sucks eh?

A good poem

“A Pair of Shoes”

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are, might make them uncomfortable.
To truly understand these shoes, you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some woman are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.

- Author unknown

Monday, April 27, 2009

How to tell Jackson

I struggle with how or when to tell Jackson that he has a little brother. He never knew I was pregnant, never knew Benjamin was born or that he died. He sees his pictures on the side table. He sees me crying a lot. I know he understands that something sad happened. He visited me in the hospital.

I don't remember what I was doing the other day but I was at my computer and a photo of Benjamin came up unexpectedly. Jackson was sitting on my lap and I told him that the picture was of Benjamin. I told him that he was his little brother. I told him that Mommy misses him very much and that was why mommy cries a lot. And of course I started crying. He was concerned and said Mama about 20 times. I tried to pull it together but it's hard sometimes. I hate crying in front of him. I hate that he gets concerned. I hate that he doesn't know why I'm crying and sometimes takes it personally. I hate telling him that 'Mommy is sad'. But some days I am sad. Some days I just need to cry. Some days I can't hold it in until he is napping.

I want him to know all about Benjamin. I want him to know that he has a little brother. A little brother that didn't get a chance to live outside of me. But I don't want it to scare him. He's too little to know death that well. He's too little to be scared that another baby will die. I've got that covered enough for the both of us. I want him to be innocent and naive. I want him to know that I am pregnant now and to believe that in October he will have a little baby to fawn over.

But I am scared. I'm scared to tell him I'm pregnant. I'm scared to explain to him that I will be having a baby. I'm scared that if I tell him all of that and the worst happens again then I will have to tell him that horrid news. I am glad that he never knew I was pregnant with Benjamin. I'm glad I didn't have to look at his sweet face and tell him that his baby that he was so excited about was not going to come home with us. I'm glad that I didn't have to see him sad about it. My heart could not have taken that.

So now I just don't know what to do. I don't know when to tell Jackson that I am pregnant. I don't know when to tell him all about Benjamin. I don't know what is appropriate to tell a 2 year old and what is best left until they are older. I don't want to keep anything from him, but I don't want to unnecessarily burden him with sadness.

Eventually he'll know I'm pregnant. Hopefully that happens when he comes to visit me in the hospital with a screaming kicking baby in my arms.

And eventually he'll know all about Benjamin. When the time is right. Whenever that may be.

Friday, April 24, 2009

Enough already!

I am annoyed. I am fed up and annoyed. I am sick of doctors changing their damn minds about what happened with Benjamin. I am beyond frustrated with thinking we have the answer and a game plan for this pregnancy and then finding out a few weeks later that what we thought was true is not true. I am sick of it all!

I mean, he died five and a half months ago! What new information could possible still come up to change the cause of death?? They found something new? No, he's been cremated. I just don't get it. I don't get it at all and I am fed up with it.

First we were told that it was an unknown reason. That we probably would never know the reason that his heart stopped.

Then we were told that his left lung had completely clotted off. That that was the cause of his death.

Then we were told that he had blood clots in his umbilical cord and at least one traveled to his lung and that was the cause of death. The doctors went a bet further and said that Benjamin's blood was thicker than it should have been and when he was compressing his cord (which all babies do) the blood pooled up behind the compression and clotted.

I was sent for a gazillion vials of blood to be taken to test for blood clotting disorders. We were told that I might have a blood clotting disorder that got passed to Benjamin. I was also told that it might have just been a fluke. That his blood might have just been thicker because of some sort of gene mutation.

All my blood work came back normal. I don't have any kind of disorder. So in my follow up appointment with the high risk doctor I was told that Benjamin's death was just a fluke. That his blood was not thicker than it should have been. That it just clotted because he was compressing the cord. So now his cause of death is beeing deemed a 'cord accident'.

I have a problem with this. "Cord accident" is what they say when they don't know why the baby died. It's a catch-all to explain any unexplained stillbirth. We know why Benjamin died. We know he had blood clots. They said his blood was thicker. Now they are saying it wasn't. How the hell do they know this? There is no way, at all, for them to know if it was thicker or not. When they told me it was thicker I assumed they were speaking factually, based on the autopsy findings. Apparently it was all a theory. A theory that I put a lot of weight into. It gave me something to believe. Something to calm and reassure me that this baby would be okay. I'm on a daily dose of aspirin to keep this baby's blood thin. I thought that was the magic answer. Apparently that might not be true.

Just so sick of this. You would think that your baby dies, you get an autopsy done, you get genetic testing done, you should have some answers. It should not keep changing every couple weeks. How the hell can it keep changing? Do they even know what the heck they are talking about?

At this point it wouldn't surprise me if they came back and said he didn't have blood clots, that they were looking at the wrong charts and he actually died from something totally different.

But really, whatever the reason for his death doesn't change much. He still died. I'm still pregnant again and scared shitless at times. I will still be demanding more care, more thorough checkups, closer monitoring, more hand holding. I don't think that's too much to ask.

Tuesday, April 14, 2009

Random thoughts and an announcement

For the past 5 months there have been so many random thoughts, random reminders, random sucker punches. It's amazing how many things that seem so innocent and unimportant suddenly become so ridiculously apparent once you have lost someone.

For instance we watched that Benjamin Button movie the other day. Y'know the one where the person is born old and 'ages' younger? It was an odd, yet good, movie. The main character's name was Benjamin. I still cannot hear that name without getting a little choked up. But the clincher? The other main character's name was Daisy. Odd, right?

Another 'coincidence' was at Christmas when we bought one of those village houses that you can collect at Christmas. I opened the box and inside was a brochure for joining the collecting club. You have to pay for the membership and you get a 'free' collector's edition house. This year's house was "Benjamin's Watches". Of course it was. It took a lot for me not to join the stupid collector's club just so I could get that house. It seemed like some odd sign that I had to believe in.

Or anther time when Brian was moving some boxes for work. He had them all in the back of the van and when he opened the back door the box that was right at eye level was labeled 'Benjamin'. These were not our boxes and had absolutely no reason to be labeled that way.

And what is with all the people having stillbirths lately?? I know that I am hyperaware of them now, but it seems excessive. It seems like every week I hear of someone that has recently had a stillbirth, or their friend just had a stillbirth. It just happens way too often. Before I had Benjamin I never seemed to hear of it. I'm sure that was because it didn't affect me like it does now and so I just never paid as much attention then. That makes me sad. Sad to think that just because I never had a baby die, another mother's pain didn't mean as much to me. Like it wasn't important then. Now though, every time I hear a story of a mother losing a child it just cuts straight to my heart. I can vividly feel the pain they are going through, I can understand the turmoil they are in and the desperate wishing they are doing. I'm glad I can feel this now. I wish I could still be blissfully ignorant about it, but I am thankful that I can feel such empathy for others. I know they need it; need someone to understand and care. I know I needed it. Hell, I know I still need it.

We were visiting one of Brian's cousins this weekend. Stayed with them for the long weekend. It was a great trip. They didn't know very much about Benjamin. They knew he was stillborn, but that was basically all. I got to talk about him a lot this weekend. I need times like that. I need to be able to talk about him, tell more people about him. Keep his memory alive. It's all we've got of him.

As for the big announcement. Most of you already know, but I'll say it again. And then I'll obsess about it. I'm pregnant. Again. 14 weeks to be exact. I'm excited but I'm also scared shitless at times. I cannot wrap my head around the fact that there is no reason to believe that this baby will not be born alive. I had no doubt in my mind that Benjamin would be born alive in December and sitting on my lap Christmas day. I had the whole image worked out. Brian and Jackson would be sitting under the tree opening presents while I sat with the baby on the couch nursing him/her. We were going to be a happy little family of four. That hurt so much to not have happen. Christmas morning was tough because the image I so desperately wanted to play out never did. Instead we were both sitting at the tree with Jackson. It was still nice, but part of me just felt so empty.

So now I am supposed to be expecting to have another little baby come home with us in October. I'm due October 9th, but probably will be induced around 37 weeks, which would be around September 18th. I cannot bring myself to think in terms of 'when' but more in terms of 'if'. I know that is common among women who have gone through what I have. I wish I could go back to the blissfully ignorant days of my first pregnancy. Where I just thought everything would work out. No questions about it. I had the freaking nursery done at 25 weeks because I knew that the chances of the baby surviving at that gestational age were good! 25 weeks! As if the baby would be coming home to the nursery any time soon after the birth! So naive. So blissfully naive.

I am happy tho. We wanted to get pregnant as soon as possible. So far this pregnancy has gone smoothly. I have felt fine, so fine that it freaks me out because I don't feel pregnant. I am being monitored closely by my maternity doctor and a high risk OB. Everything is going as it should. Even the anxiety. It's hard to just 'relax and take it easy' when you have no point that you can just relax at. It's not like I have a magic week that I just have to make it past and then I can breath easier. I carried Benjamin to almost full term. By the time I make it to 34/36 weeks I'll be almost ready to deliver this baby. Where is the breathing easier there?

I just have to find a way to believe, honestly believe, that this baby is going to be fine and be born screaming bloody murder in another 23-26 weeks. I know all the stats, all the facts and all the logical reasons to think this baby will not be stillborn. I know all of that. Doesn't mean I know it in my heart tho.

Wednesday, April 8, 2009

Sadness

A friend of mine is having her baby girl today. She is only 18 weeks pregnant. I am so heartbroken for her. Sad for what I know is ahead of her. Sad for the loss of the future she was so excited about, and sad for her as she faces this devastating new reality. I will be there for her in any way I can. As a mom who has gone through this hurt I feel the overwhelming urge to somehow make it easier for her. If I can provide some comfort, some compassion, some understanding, then it makes my loss a little more bearable. If losing my sweet baby Benjamin helps her find a way to cope with losing her sweet baby girl then I have done right by him.

I was at the store yesterday picking up some Easter chocolate for Jackson. I decided to look for a card for my friend. As I stood in the generic sympathy and thinking of you section I was disappointed with the selection. All the 'loss' cards talked about the happy memories you can hold onto, the years they spent touching our lives. What kind of card do you buy for a mom that is delivering her baby that will not create memories of their own? Where is the card for that? All the thinking of you cards were inadequate and trivial. Then I came across the card. The card that summed up this whole nightmare perfectly. The card that had me bawling in the aisles. Here is the poem in the card.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
We are all creatures
of this great earth -
interconnected in ways
beyond understanding.

Take elephants.
So big.
So strong.
And yet,
when a member
of the herd passes,
even elephants mourn.
They gather around.
extend their trunks,
and gently touch
the tusks
of their fallen friend.
It's their ritual.
It's how they heal.
And it's sad.
And it's beautiful.

So maybe
what we're trying to say
is that the world
doesn't expect you
to be fine with this.

Be how you need to be.
Mourn how you need to mourn.

And know that
you're thought of
with love.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And you are thought of with love today. As you face this nightmare that no mother should ever have to face. I am thinking about you all day, as I have for the past week and a half. Know that you are not alone. There are so many people that love you and that want to help you and be here for you, as you mourn. However you need to mourn.