The world owes me a cookie today

This morning I got some happy IVF news.
I was so excited, truly happy for the first time in months.
Late this afternoon I get another call. Oops we got it wrong.
You can't have that dream.
I went from our best case scenario to our absolute worst case scenario.
I feel like my world has come crashing down again.

Ive spent hours in tears. I now know that I will cry for the next 7-8 months.
Until I might finally be able to try to have another baby.
I feel like I should give up. Like I should stop hoping, stop dreaming, stop wanting more.
I feel like I am just inviting more heartache.
I am just in so much pain. It hurts. It really, really hurts.

Everytime I get a glimpse of good, something snatches it away again.
When does this ever stop?
Why can't anything good happen to me?
I feel like I'll never be happy again.

Wasnt my baby dying bad enough?


When is enough, enough?

2 months without Caden

ho hum

Despite the overwhelming negativity of the past two entries, I'm doing ok.
I hit a rough patch at work yesterday (which I'm sure I will write about another day).

Despite running on three hours sleep and a ton of coffee (and not much else) I feel okay today.
I did have a moment this morning when I was dropping off Rory at his Vacation Care while I'm at work, there was a cheeky little boy saying goodbye to his big brother and for the first time I had a glimpse of what we will miss with Caden. I could see him for the first time as a child rather than the baby I always see him as. It's making me tear up a little to write, but I was surprised at how the thought didn't upset me like I thought it would.

I'm keeping myself really busy, editing a newspaper, getting ready for the long weekend where I get to meet my SIL's new partner (v. exciting) and going to work. All I want to do though is go home and lay on the couch with a box of chocolates.

So I guess I've settled into a sort of melancholy rather than the deep grief I was feeling a few days ago. Hmm.

Don't know which I prefer to tell you the truth.

hate this. want it to go away.

I feel so sad today.
So fucking sad.

Last night I cried again. And when I say cried, I dont mean quiet tears, I have them every day. I mean gut wrenching, clutching my chest, screaming tears.
It always hits me at about 1:30am-2am. And because Kim has to be up at 5:30am to go to work, I was trying so hard to be quiet. I even went out to the lounge room to avoid waking her up. I gave myself one hell of a headache holding in my really loud sobs. All I wanted to do was wail.

I thought I had it out of my system, so I went back to bed. Kept sobbing quietly. Eventually Kim woke up and grabbed me into a hug as she does. And it broke out of me. I wailed so hard and so loud, I nearly threw up. I sobbed and wailed for a little bit and then was so close to being physically ill that I forced myself to calm down. It felt fucking good to make so much noise though.

And today I'm off work, eating pizza for lunch, lying on the couch with a killer headache watching tv and drinking bourbon. And feeling utterly sorry for myself.

I fucking hate this.

I FUCKING HATE THIS.

I thought I was doing well seeing babies around and stuff, but I have found my biggst trigger. Seeing families like ours. Two mums and a baby just does.me.in.

I FUCKING HATE THIS.

issues

please excuse the language, it's how I feel right now - if you're offended by the 'f' word, skip this entry. Seriously.

So I'm having such body issues right now. I hate myself.

It doesnt matter how many times Kim says she loves me and all of me, it doesn't make me feel any better.

I never felt so beautiful as I did when I was pregnant. I felt good about me. I joked about being the size of a rhinoceros but the truth is I admired myself and my stomach every time I was near a mirror.

I knew that once I had the baby I would be fat again, but who would care? When I had a beautiful baby to show for it.

Thats what fucking sucks about being a deadbabymama. When people look at me they don't know that i had a baby. They just see me.

I feel fatter now than I did a month ago. My stomach is flabby and squishy and my thighs are fucking massive. I can't wear my old clothes and be damned if I'm wearing maternity clothes.

I'm angry, and frustrated, and just...angry.

Fuck.

I feel fucking disgusting.

scattered

I feel so scattered at the moment. Randomly during the day I come up with something I feel is important and should of course be chronicled in this here blog...and then I sit down at the computer and promptly forget it.

My mind is heavy with three things right now.

Dead babies and all things deadbaby related.
The Next Baby – also known as the IVF nightmare
The massive, expensive, major, impending renovations/extension to our house

*sigh*

Because nothing in my life could be simple.

I have thousands of things I want to do. And yet, on my days off, I sit here at the computer and read blogs all freaking day. And achieve nothing.

I feel so overwhelmed by the above 3 Big Things. I am determined that Caden’s death will not be in vain. I have pretty much made it my life’s mission to make sure that something good comes from his passing. To start with, I never would have met some women who truly amaze me. But I also need a cause. There is nothing that could have been done to save my beloved. But there are illnesses and diseases that can be treated in utero. No baby should die from a preventable cause. I have a few things in the works that, if I can ever get them out of my head and into reality, will be great. But unfortunately I am one of those people with a million dollar idea who never turn it into anything concrete. Must work on that.

I am also clearly obsessed with the world of stillbirth and neonatal death. I had truly no idea that this tragedy was so freaking common. It breaks my heart that at least once a week, I meet a new friend who has lost their beloved baby. As I said to Abby today, the universe owes us a freaking cookie. A box of cookies even.

Every other waking second is filled with thoughts on IVF. Like making the decision to go that far wasn’t enough. Now we are looking down the barrel of a 6 month wait. 6 months doesn’t seem like a long time, but when you should have been holding your 2 month old son, and instead your arms are empty, it’s a fucking eternity. Being the anal retentive planner I am, I have started making spreadsheets of pros and cons of each clinic, each route, even creating a points system to see which one comes out on top. *sigh* Not that I overthink things at all.

And when I’m not thinking about babies, I’m thinking of the other major event in our lives. The renovations. The planned extension to the house that was first proposed over a year ago. *sigh* I really want it done. And yesterday. Unfortunately these things take a lot of time, and a buttload of cash. Cash we don’t necessarily have. Plus I have to do 100% of the work and organizing as I am project managing. Why cant I just come home one day and go “hey! We have a new kitchen/bathroom/4^th bedroom/dining room extension! Yay for us!?!”

I guess my brain is just full up and it’s tired.

This wasn’t actually the entry I planned to write. Dammit. Oh well. I’ll try again tomorrow.

thank you

I'm not in a great place right now. I've been crying myself to sleep every night again.
I also feel like my mind is gone. Honestly, I can barely get these words written out. I can't concentrate long enough on ANYTHING. I have at least 5 projects that are on a deadline and no hope of getting any of them done any time soon.
I am used to being a person with a hundred things going on at once. At the moment I'm lucky to get one thing done a day, and I'm not getting anywhere near enough done each day.

But for now I wanted to send out a thankyou to those of you who have left comments for me.
I am somewhat surprised that so many people are visiting my blog, over 2600 hits in only 2 weeks!

I'm really interested in who is reading. Can you leave us a message in our guestbook to let me know you're here...I dont expect comments on entries, but I'd love to get to know all of you who are reading about us :)

so where do we go from here?

So what does this mean for me now?

Dr P told me of another patient who had a recurring disjunction problem. She had a trisomy 18 baby, a trisomy 13 baby, a trisomy 21 baby and two miscarriages.

I simply cannot face something like that. Because of my own personal belief that all life is sacred, I could never terminate a pregnancy. Not only that, but I personally am friends with 3 adults whose parents would have been offered a medical termination. I personally cannot imagine the world without them. I also am friends with someone whose baby faced a 0.01% chance of survival – she chose to continue the pregnancy and her child is still here (please do note that I am not against abortion. I am pro-choice. But my own personal belief is that it’s not an option for me).

So I have decided that Caden will be the last of my biological children.

In one sense I am lucky, in that biology has never meant a great deal to me. My mother's biological family disowned us when she divorced my father (still the best move she ever made) and she created her own family. Her best friend became like her sister, her best friends mother is the only grandma I have ever known and I love her dearly.

I can but assume most of my astute readers have picked up on the fact that I am also a lesbian, and my partner had no biological link to Caden. She unequivocably is his mother. She said the second she saw him any worries she had over whether he would feel like hers disappeared. The second she saw him, she knew he was hers, no questions asked.

So knowing that I will not give birth to another biological child, while there is some feeling of loss, does not leave us without options. Dr P suggested PGD - which is a technique used during IVF, where they allow an embryo to grow to blastocyst stage and then extract a few cells to test for chromosomal abnormalities. However, it is only 80-90% effective, and they still recommend all the screening tests to be sure. Add to that the fact that it is a new technology, and there are no long term studies on how it might affect the child’s development. Plus hey, we have another option.

The final option, the one that makes the most sense to both of us, is to do IVF with Kim as my egg donor. The act of carrying the baby and giving birth to it will give me a connection just as great as a biological link. Kim will also have that link through biology. We have spoken to both our families, who were not 100% receptive to the idea of us haing children in the first place, and they are all on board with this plan. My mother (herself an IVF veteran) said to me “look at it this way. If you were in a heterosexual relationship, and there was male factor infertility and you had to use a sperm donor, only one of you would have a biological link. Or if there was this problem with you, and you needed an egg donor, only one of you would have a link. This is no different!”

Uhh, I didn’t actually need reassurance, I love the idea of carrying my partner’s child, but thanks!

So now we start with the probably very long process of counseling, medical tests and eventually IVF. So there is at least a light at the end of this very, very long tunnel.

not exactly what we were hoping for

***warning - this is long***

abbreviated version =
Caden was confirmed to have Trisomy 18
His chromosomes actually were 48 xxy meaning a double aneuploidy
I most likely will not have any more biological children

long version =
The day I had been waiting impatiently for over the past month finally arrived and I was so incredibly nervous the entire day. I had been counting down literally the hours and minutes until I could get some answers. But I felt ill with anticipation. On one hand I was desperate to know the answers and at the same time I was dreading what I would hear. I had many thoughts during the morning and I wish I had thought to write them down because I remember nothing of that morning.

We arrived at the hospital just in time for our appointment and Dr P was waiting for us (The head of obstetrics at the major hospital in our city). We waited a few minutes while he paged Dr JT (the doctor who informed me of Caden's death and performed the ultrasounds that day).

Dr P started off by saying "There are four things we look at in this appointment."
(1) What happened to the baby
(2) Was it preventable
(3) What are the implications for the future
(4) How will we manage the next pregnancy

He started by looking at the pathology reports and saying "the baby was very small (duh) and so was the placenta." He started talking about nutritional issues (as in the placenta was too small and therefore the baby was IUGR)

I don’t remember all that much of this part of the appointment as I started getting really agitated and had a mild anxiety attack, feeling like I was going to throw up. JT left to get me a glass of water. I started freaking out internally, thinking he was trying to tell me that Caden had died because of IUGR. If this had been the case I would have been virtually homocidal as I had tried to get the attention of all of my caregivers to pay more attention to the risk of IUGR and they did nothing. I really don't remember all that much and I wish I had the forethought to take my digital recorder to record the conversation. It felt like he was talking for at least half an hour, but looking back it may have only been 5 or so minutes. Kim has no real recollection of this time either.

Eventually JT mentioned something about markers and I started to feel a little relief. Dr P pulled up the chromosome reports and said "Oh it does look like your baby never had a chance, he had a chromosome problem" and I said "Trisomy 18".

He looked a little taken aback, and I for the first time felt true relief and smiled. I said "I knew it, in the back of my mind, since his 20 week scan."
"Why was that?"
"First because of the choroid plexus cyst in his brain, also I saw his size, and the fact that he had clenched fists - which he was also born with"

I brought up the fact that I had a 'negative' result for T18 on the nuchal translucency and blood tests, and he commented that actually, my HCG levels were actually quite low (indicating a problem) and that my risk of T18 at 1:1655 was not really a negative result as normally at my age they would expect over 1:30,000. This was a huge eye opener as I kept being told my risk was low, which is what had made me doubt my own self diagnosis of T18.

He then gave a quick run down of how the Trisomy occurred – all of which I knew. He asked what I was studying at university, thinking I was doing medicine or nursing. I laughed and said “actually I’m studying architecture and digital media.” I totally respected him for not dumbing down his answers to me.

As he was running through the brief introduction of the meiosis process (which I am well familiar with, having tutored high school biology for a few years) he looked at the report on the computer and seemed surprised. He informed me that Caden’s chromosomes actually measured 48xxy, meaning a double aneuploidy.

A ‘normal’ person has 46 chromosomes. A person with a Trisomy has 47 chromosomes. Where you normally have 2 of each chromosome, a Trisomy baby has 3 of one chromosome. Caden therefore had TWO anomalies, both Trisomy 18 and the sex chromosomes. From what I can gather from articles in medical journals, this is a very rare occurrence. So the final dignosis is Trisomy 18 and Klinefelter syndrome.

Answer to number (2) is that no, it wasn’t preventable. Dear Caden never stood a chance. However. Dr P did go on to say a few times that it is absolutely appalling that a 1500g baby made it to 37 weeks with no care provider picking it up, and he apologized for this. I told him about the awful ‘care’ I got from the doctor I was seeing at the other hospital. He knew her name, and I’m hoping that she will get some kind of reprimand for her behaviour (but somehow I doubt it).

(3) the implications for the future are kind of unclear. If Caden was a ‘simple’ trisomy, my risk would have increased to about 1%. Still sounds ok, right? Well if you consider the ‘normal’ risk is about 0.000003% it looks a little different doesn’t it.

Of course, this is not the only problem. The fact that he had a double aneuploidy signifies a more significant segregation defect in the meiosis process.

The problem is a maternal issue. This issue lies in my eggs. There is no way to test whether this will reoccur, as they would have to test every egg which is, of course, impossible, especially as we know, because there is no telling which egg will be released when I ovulate.

Dr P says the only thing to do is try again, and basically hope for the best.

(4) they will manage me very differently next time. I will be classified as high risk. They will do the same screening tests as they did this time, but will pay far closer attention to the results. I will be offered invasive tests, but Dr P does not suggest the amnio/CVS if I would not terminate, as they carry a risk of miscarriage. He would do them though, if I wanted.

I will see them more frequently, and their main aim will apparently be reassurance. Basically, if it makes me feel better they will do an ultrasound every two weeks at each appointment to make sure everything is okay. They also prefer to induce labour as early as possible. I will probably be induced around 38 weeks.

stay tuned: tomorrow = so where do we go from here?

mother's instinct...trust it

Big news...I was right.

Got all of the results of Caden's autopsy this afternoon, and to cut a long story short, he did have Trisomy 18, a lethal chromosome defect. It is amazing he lived as long as he did and he passed in the most peaceful way possible. I feel such relief it is hard to put it into words.

I will write a full entry with all the details tomorrow, tonight I am emotionally exhausted.

new guilt

I feel a new guilt.
I'm back at work.
And I don't think about Caden all day. I have huge photos of him plastered all over the walls of my desk area and I stare at him all day. But I don't really think about him.
I havent cried in days.
I read the heart wrenching blog entries of the other women living without their babies and I'm jealous.

I wish I felt their pain. I wish I could do nothing but cry all day.
Then I would feel like I was doing him justice. As it is, I feel like I'm failing him more every day that passes. That I'm not enough of a mother to love him so much that I cant live without him.
I wish so much that I didnt have to live without him. I wish he were HERE where he belongs...

and now I'm crying. It seems that all I needed to do was write about him


Baby boy I miss you. I wish you were here with your mamas where you belong. I wish I had more than a blanket and your name on my foot. I wish I had you...

tired

I want to sit down and write a thought-provoking, heartfelt entry about how I am these days. how much this life sucks. How I feel like I am barely existing rather than living. But I am tired.

I am tired of emotion.
I am tired of writing.
I am tired of coming up with new awful scenarios in my mind.
I am tired of waiting.

I am tired of pushing thoughts of Caden out of my mind because I know that when I let them in it's bad, awful, hurtful, horrific.

I know that pushing these thoughts out of my mind is unhealthy. That I'm not 'letting myself grieve'. I dont want to grieve. Grieving fucking sucks. I want to feel better. I want to be better. I want to enjoy life again. I want to feel hope again.

I want to be 'over this' even though I know, fifty years from now I will think of him and cry like it happened yesterday. I can't get over this. I'll never be 'over this'. I just want to sleep. I just want it all to go away and have some peace.

Books on Stillbirth

I have always been an avid reader. I have well over a thousand books in my personal library at home and I visit my local library at least once a week. It has never let me down until now. Where are the books that will talk to me about stillbirth? Where are the good books on grief?

I believe that knowledge is power. I am looking for reassurance, I am looking for answers. I know I wont find answers to why my son died in books. But I am hoping to find some sort of reassurance, some form of coping mechanisms.

So my friends who have asked me repeatedly to tell them what they can do to help me at this time, find me books. Once I have got what I can from them I plan to pass them on to someone else who can use them. Second hand books are great. If you come across any, please, please pick them up for me. I know I have been terrible at replying to your phone calls and emails. I will get there, I assure you. Your continued love means the world to me, and I cant wait to see you all again. I went back to work for my first day today...baby steps right?

Online friends - can you refer me to any books you have found that helped you out?

Caden's Story part two

THE HOSPITAL
We got into the hospital and went straight to womens assessment. I think I was supposed to be there at 5, or 5:30, whatever time it was we got there just after. There was a heavily pregnant bogan looking woman there in the waiting room and I looked at her jealous and all. The girl on the desk was on the phone and we stood there for ages. I wanted to tell her why we were there, make her feel bad. When she finally got off the phone I told her my name and she said to take a seat and someone would be with me soon. We sat down and everything seemed normal. I felt this need for everyone to know why we were there. Because I knew I looked like every other pregnant woman. Kim said to me “is it sadistic of me to want to tell her? To make her feel bad?” haha we think exactly the same way.

Another woman called us and put a hospital bracelet on me. The hospital bracelet I am still wearing. We walked up to labour and delivery. It was surreal.
They put us in room 1. The midwife came in, Olivia, and introduced herself, said they put the stillbirths in this room so we are away from most of the babies but unfortunately it is the nature of the place that we may hear babies crying. She apologized. I said it was fine. I chose not to put on the hospital gowns laid out on the bed. We sat and ate our Subway together. Olivia offered us dinners but we chose to eat our Subways instead.

Everything from here out blurs a little but I will try and write as much as I remember. Olivia told us that we could get the TV on if we wanted but we had to go downstairs to pay for it. Because we would have to wait for the drs to come in, we decided to go together. It was strange walking through the hospital like that. I commented how our prenatal class was going on at that very moment in the same hospital one floor away. Kim said she hoped we didn’t run into any of them. I wanted to in a sadistic way. I wanted them all to know this tragedy we were in the middle of. I still don’t know why. We paid to get the tv on in any case, and went back up.

We were waiting around for ages. Another doctor came in and said they wouldnt do an amnio on me (which the first doctor had suggested) because if the baby has been passed for a few days it wont reveal much, and they could get adequate samples from the baby after the birth, as we had agreed to an autopsy. He was really emotional. More than we were in fact. He went through what we would do, and that was about it. Well, thats all I remember.

Eventually the midwives came back in, they had to do an internal on me, so off came the pants and I lay there while they checked me and inserted the first lot of gels to dilate my cervix.

My pants never went back on. When I had to, I went to the bathroom with no pants on. Then there was the drama with the IV. I have delicate veins at the best of times. Two nurses tried in my right hand. It hurt so much – it was just the worst pain. Before they tried a second time they thankfully gave me a shot of local anesthetic. Because they didn’t get it that time either. Then they tried on the left side. No luck. They were about to go into the cubital fossa (not good) when the anesthetist arrived and took over. She said she didn’t want the cubital fossa as I wouldn’t be able to sleep properly. It took her a few goes as well but she finally got it in my left wrist. Later on in the morning it was hurting and the nurse flushed it out and holy shit that hurt. Apparently there was a clot. Ouch.

Olivia brought in some booklets about stillbirth etc. I got one sentence into the teddy love club brochure and read
“An angel in the book of life wrote down your baby's birth.
Then whispered as she closed the book
"too beautiful for earth”
and started bawling my eyes out. We cried some, then stopped. Never cried in front of Olivia much, she kept saying we were so brave.

Anyway. We watched some tv and Olivia made up a bed for Kim to sleep on. She said we could snuggle in together but the bed is a pretty tight fit. We snuggled for ages but eventually Kim went over to the bed. She gave us both sleeping tablets. Kim slept. I didn’t really. I kept waking up. I had a read of some of the literature that Olivia had left for us. Cried a bit off and on.

In the morning I was awake before Kim. We got our breakfast and I got another dose of gels. They didn’t really do an internal or anything. At some point Kim was looking out the window and saw Kate running with Jess lagging behind on her bike. Kim commented on how her friends are always close by, even when we dont know it.

I was feeling contractions about every three minutes but they weren’t too bad. They gave me the option of having an epidural, pethidene shots, or a PCA – patient controlled anesthesia. I wanted the pethidene and an epi, but they said the PCA would be good, it’s connected into my IV and I push a button every 3 minutes to release 1mg of fentonyl. I used it through the morning. We mostly watched TV and let time go by. I think I had a third dose of gels. Olivia originally said they would break my waters and start the drip to “blast the baby out”. But that day she told us we would just have the gels, and they wouldn’t break the waters because they had more effect on dilating me to get the baby out, because he was so small.

THE BIRTH
Mum rang at 2pm just after Days of our lives started. I was feeling the contractions more at this point but nothing like when I was in labour with Rory. I hung up because the midwife had come in to speak to me. I called her back in and she asked if they were stronger yet. I said they were. She asked if I wanted the epi yet or a bolus of fentonyl (basically one big shot). I said the fentonyl, didn’t think I was ready for the epi yet. She walked out and I had a huge strong contraction. They were about 1 ½ minutes apart and I called her back and said I changed my mind I want the epidural now.

From there it all went like lightning. I was in so much pain. I was begging for something but there was no time for an epidural. They called someone in to get me the bolus of fentonyl. I started saying I needed to pee. It felt strong, but not like I needed to push. They were trying to unhook the IV so I could go to the bathroom. Then all of a sudden it changed and I needed to push. So I did. Not long after I felt like he was out. I asked if it was him and they said no, it’s the waters (okay that confused me…but anyway. I don’t remember my waters breaking at all but I know after it all I was saturated by so much water). I kept pushing. The nurses were almost yelling at the anesthetist to get the fentonyl into me. About a minute after they finally got the fentonyl in he was born at 2:41pm.

All in all my labour was eleven minutes from when I asked for the epidural to his birth.

balloons for caden

We went down to the beach tonight and released the balloons that Lynn sent us on the day of Cadens memorial. It was really peaceful and lovely. Rory wanted Caden to fly down and get them but we explained the balloons would have to fly up to him.