If you know me in real life and have found this blog, please honour my wishes and don't read on. I need this place to freely write my feelings to help me to heal and if you're reading, I'll censor myself. I have no way of knowing who is reading so all I can do is trust you to honour my wishes. Thank you.

(this doesn't apply to any of my fellow mums of angels I've been lucky enough to meet in real life)

Wednesday, December 15, 2010

The Old Me vs The New Me

There's a post over at Glow about how we've changed since losing our precious babies and have parts of the 'old me' come back.

The old me was extremely extroverted and normally I was the loud one in a group of people. I loved meeting new people and I wondered about what having a baby would do to my identity.

After Matilda died I didn't want to see anyone for a long long time. And once I could no longer hide my pregnancy with Max I didn't want to see people either. It was something my husband worried about because it was such a huge departure from the person I used to be. But now I can feel that part of me coming back. The night before last the neighbours invited us over for a barbie with their brother, wife, and kids that were staying. It was spur of the moment and I was about to say no but thank for asking as I've been doing for the last 18 months when I realised I didn't really have a reason to say no and it sounded like fun. And it was. So it was nice to feel that part of me returning. But there's still something that's been taken away, some confidence that's missing. Before if I emailed people and they didn't respond I never really thought about it but now I always find myself thinking 'was it something I said'. The same in a group if I say something and it all goes silent or there's a pause before asking. I guess it's that I often feel socially awkard in a way I never used too.

I find meeting new people far harder than I used too. There's always the decision about whether I want to talk about Matilda with them. And then if I don't and the conversation swings in a certain way it becomes difficult or just plain painful. Like when people start talking about their 'awful pregnancy' because they had morning sickness and were uncomfortable at the end. In my books, if that's all you've got to complain about and you are complaining, then you've really got no idea. Or I do mention Matilda and they don't even acknowledge it.

As for wondering about what a baby would do to my identity. I've spent the last 18 months hoping for a baby to define my identity so that's not something I worry about anymore. Maybe I will in time but right now, I'm just so happy I have be defined as a Mum by other people and spend my days at home marvelling at Max alive and growing.

I'm more emphathetic and also more selfish. This seems to be pretty common among us BLMs.

I'm crying more lately than I have in a while. I'm not sure why. If it's approaching our second Christmas without Matilda. If spending time around families means I see girls about Matilda's age more often and I look at them and wonder what she would've looked like now. If it's every time Max does something new it's a reminder that I'll never see Matilda do those things. If it's that her birthday was not as hard as I expected due to being so caught up in caring for a newborn that it's catching up with me now. If it's because now Max is here everyone thinks I'm fine again - I'm sure even my closest friends would be shocked to find out that I still cry most days.

But despite all that life is good. The sun is shining. My Mum was here week before last and we've booked flights to see them at the end of January. We have a Christmas Tree with presents underneath it in the corner. Max is asleep in his cot and this afternoon we're going to Mother's Group this afternoon. It's just that someone will always be missing and missed.

Sunday, December 12, 2010


When Max was born my MIL gave us a gown she wanted us to take a photo of him wearing. She didn't say much about it other than DH and his sister had both had photos in it. We took the photos last week and I got DH to ask her what the history of it was. Her MIL had made her 3 gowns for Michelle - her first child who died a few hours after she was born.

I remember the first time she told me about Michelle - it was before we got married and had even thought about kids. She explained with tears in her eyes about going through labour and then Michelle being taken away and no one telling them what was going on. She doesn't talk about it a lot but has more since Matilda died. Michelle was taken away straight after the birth and she never got to see or hold her - she knows she had dark hair from the glimpse she got but that's all. She has said to me she thinks I have it much harder than her because Matilda lived for four days and I got to hold her but I'm not sure that's really the case.

I never knew she'd kept anything she had for Michelle but obviously she's kept this all these years (Michelle would have been 32 in May).

I know I'll love and miss Matilda forever but thinking about that is hard. So I try to take it a day at a time. Now Max is here I'm sure everyone thinks we happy and everything is fine now. I'm sure they don't think about the fact that every single time someone asks me 'Is he your first?' my heart catches and I have two seconds to decide if the person asking is someone I want to tell about Matilda. I'm sure they don't think about every time someone says 'When you have your second' that my head screams 'I already have two babies!'. That when they start talking about how they think a small gap between siblings is best that I feel exhausted and terrified by the prospect of trying to get through another pregnancy. And I know they don't think about the fact that 32 years from now I'll be thinking about Matilda and wondering what sort of women she would have grown into and how my heart breaks that I'll never know.

Saturday, December 4, 2010

Remembering Matilda

We were over at the neighbours having a Christmas drink today and their two boys (just turned 5 & 3) were playing with Max on the floor. They're pretty fascinated with him and watched closely while I breastfed him and helped DH change a nappy - it's very cute. When they were playing with them on the floor the older one said 'you had another baby before' and I said 'yes'. He then said 'but she died straight away didn't she' and I again said 'yes'. He asked why and I said she was very sick. It's weird - I assumed he would forget all about Matilda but out of everyone other than my immediate family and a few very close friends, he's the only one that mentioned her after the first few months.

The lead up to Christmas this year is hugely different to last year when the shock was wearing off and I was left with the huge weight of grief losing a baby brings. I'm looking forward to it rather than just wishing the days away and I'm so very grateful this is the case.

Got to see Max roll over for the first time today and he's 'talking' more and more. The boys next door asked me what he was saying but I'm still not quite sure ;-)

Hoping the days are gentle for those of you approaching your first Christmas without your precious babies.

Wednesday, December 1, 2010

The most surprising thing about motherhood

At today's ABA (breasting association) meeting the icebreaker question was 'what have you found the most surprising thing about motherhood?' In my head I thought 'That Max is alive, breathing, crying, feeding, growing' but I didn't say that - it's not something that they would have understood. So I went with 'that babies can be so exhausted and still not go to sleep' which has been surprising. It's times like that I just feel different to all the other new Mums. But there were other Mums there with babies similar ages and it was lovely to talk about all the normal things - how much they were sleeping, feeding, and day sleeps not really going well.

Tuesday, November 30, 2010

In a parallel universe

I read a book once (no idea which book) that talked about a theory of infinite universes. For every universe you brushed your teeth in this morning there was another one you didn't. For every universe you decided on the white top there was another one you decided on the black one.

So maybe there's a universe out there where the genetic screw up that caused Matilda to have BWS didn't happen. In that universe she would have been born about the 11th of December, and we would've wondered throughout the pregnancy if she'd be late and I'd still be in hospital for Christmas (there's Christmas and Boxing Day babies in my family). And we'd be planning a first birthday party full of pink things. It's hard to believe now.

Max is growing and growing. 6.4kg last week at 9 weeks old. He's starting to smile and coo. And in the night as he feeds I marvel over the miracle that gets babies here alive and lets them grow.

Tuesday, November 23, 2010


I was sending a link to someone today about BWS and I'm not sure why but I clicked through to the prognosis section and for the first time in months read the following:

In general, the prognosis is very good. Children with BWS usually do very well and grow up to become the heights expected based on their parents heights. While children with BWS are at increased risk of childhood cancer, most children with BWS do not develop cancer and the vast majority of children who do develop cancer can be treated successfully.

I try not to spend time thinking about the 'why us' aspect because it's painful and in the end, doesn't change things. But on re-reading this, it's hard not think about the fact that most other people who go through finding out their child has BWS, the complicated pregnancy, and the NICU time get to take their children home and watch them grow up

On a different topic, I posted in the Glow forum about finding it difficult to relate to the other Mum's at mothers group. I desperately want to make friends with other Mums but I can't help feeling like the odd one out. And I'm scared - tomorrow we're talking about 'Adpatation to Parenthood'. I'm scared it's just going to be everyone talking (complaining) about the hard parts of parenting. I know parenting isn't all easy and I also don't think women pretending everything is wonderful when it isn't helps either. But I can only cope with so much of it from people who don't really understand just how lucky they were to fall pregnant, have uncomplicated pregnancies, and bring their babies home. So I guess we'll see how we go.

Max is growing, still wonderful, still beautiful, and everything else. And I still miss Matilda everyday.

Thursday, November 11, 2010

A year and one week of grief

It's been a year and one week of waking up everyday as a mother who can't look at her perfect firstborn daughter, can't hold her against my chest, can't kiss her cheeks, and can't stroke her head. We've passed through all the firsts - first Christmas, first Easter, first birthday, and first anniversary. I wish I could say it's bought some sort of peace upon me but it hasn't. She's still dead. We still have the memories of choosing a pink casket for her and getting a phone call saying 'we think she'd be more comfortable in a white one, is that OK with you?' and after saying yes and getting off the phone turning to my husband crying and asking him 'they mean she's too little for the pink one, don't they'.

The above makes it sound like I'm sad all the time but I'm not. I think about Matilda every day and I cry often. But for large periods of the day I'm happy, I'm looking after Max, kissing his cheeks, hugging to my chest, making bad jokes and reminding my husband he's meant to laugh at them, and wondering what to have for dinner.

But then it hits me once more out of the blue - I had a baby girl, she should be one, I should be watching her learn to walk, and dressing her in pink dresses. And I wonder how this happened - how it is that I'm 29 and I have a child that died.

And everyday I look at Max and I'm grateful beyond words that he is here. That I know how incrediably lucky that makes me.

Tuesday, November 2, 2010

Dear Matilda

A year ago today our hearts broke - first we found out you were very very sick and then that you were going to die. I'd say it was the worst day of my life but that's not true. It was also the best - we got to hold you for the first time. Our precious first-born baby.

We love you more than ever.

Mum and Dad xx

Monday, November 1, 2010

Hope and Guilt

Since Matilda died, I've wondered if I really ever thought she'd be coming home with us. Not based on intuition that some mothers have about their babies who die after uneventful pregnancies but based on our complicated pregnancy and Matilda's prenatal diagnosis. I have real trouble trying to remember what I thought about babyloss before my pregnancies. It seems like I've always been this person that's had a baby die but that's not true - this time last year, I believed we'd be bringing our baby home. I must have. Over the first three days of Matilda's life we took about 20 photos - if I thought there was a chance she was going to die I'm sure I would've taken hundreds. On the day she was dying the nurses took lots for us. I remember today last year - she'd had her first setback so wasn't looking as healthy (as healthy as you can in the NICU with lines everywhere) - we took the camera down but then only took two photos. I didn't want to have photos of her looking so sick. If only I'd known that was the best she'd look for the rest of her life. The only photos we have with all three of us are when she's dying.

The other reason I must have believed she was coming home was a conversation I had with DH about buying a breast pump. During the pregnancy I was really funny about buying things and getting ready - scared of 'jinxing' things. DH kept saying we needed to buy a breast pump because we knew Matilda would be spending at least a few weeks in hospital but I kept saying no lets wait. But once she was here DH was saying we needed to buy or hire one for when I was discharged and I said 'We do and I don't know why I didn't let you buy one during the pregnancy because we were always going to need it.'

Matilda's birthday was sad but not the awful day I was dreading. We went out to the park with Max for a few hours which was nice. I'm sure if Max hadn't already been here it would've sent me much lower. The reality is that a newborn baby just requires too much attention to be able to think about Matilda constantly over these days she was alive. And I feel guilty about that - like she deserves more from me. That I couldn't even give her a year of devoted grief.

Tomorrow is the anniversary of her death. I'm planning to a breastfeeding meeting with Max. I feel guilty about as well but I've relived the day she died in my mind so many times I just don't think I can stay home all day and do it minute by minute again.

Today is Melbourne Cup today. For those of you not in Australia it's the horse race 'that stops the nation'. It's all over the news. Every workplace has sweeps, lunches, etc. Everyone places bets on it even if they never bet on another race ever. Matilda died on Melbourne Cup day so even though today's not the anniversary it's pretty hard to get away from. At 5am this morning I was watching the news and it's all about the Melbourne Cup and I remembered watching the same morning news as I pumped last year. Then we went down to the NICU at 5.30 and found Matilda surrounded by doctors and were told she was bleeding in her lung again and was very very sick. Watching that coverage at 5am last year was the last time I joked and had hope for a very long time.

Friday, October 29, 2010

Happy Birthday My Darling Girl

Matilda - It's your birthday today. I hope you're having fun up there with all your little friends. We love you and wish we were throwing a first birthday party for you. Please don't see our tears as tears of sadness - they're tears from our love for you. A year ago we had hope and dreams for your life with us. Now we look to the memories you gave us and we're so honoured we got to be your parents. Please know we think about you all the time and we love you in a way that I haven't really got the words for.

Happy 1st Birthday Tilly. Love Mum and Dad xx

Wednesday, October 27, 2010

This time last year...

For the last few days whenever there's a quiet moment I'm thinking about 'this time last year'. Well this time last year was the last day Matilda's movements were normal before my placenta started failing and her movements dramatically slowed and then stopped. I was sitting happily in my hospital room watching DVDs, emailing friends, and just taking it one day at a time. There were a number of uncertainities about what we and Matilda would be facing but I didn't think (or maybe I didn't let myself think) there was a chance of her dying. A couple of weeks after she died we went back to speak the neonatologist and one of the things I wanted to ask was whether I'd totally underestimated how serious things were. I didn't think I had because I was sure they would have had the bereavement team involved before her birth if that was the case and asking us about baptism before she was born. And that was right, they didn't expect her to die.

We went to the hospital for the International Pregnancy Loss service on October 15. The nurse who'd looked after Matilda the most was there and we cried together. I asked if she'd looked after other babies with BWS and before Matilda she'd looked after a set of 27 week twins who both had BWS. They didn't make it either. And then since Matilda she's looked after two more who both did fine and went home after a few weeks.

Max is asleep on my chest in the sling. We've just hung out the nappies and will fill the day feeding, sleeping, cuddling, and lying on the play mat. I feel guilty still being so sad when I know how lucky I am to have Max. I feel guilty about not being sad enough because how can I be sad all the time when I have Max. I feel guilty that we're not planning anything much for Matilda's birthday but I just don't think I can face other people's sadness as well as my own broken heart on Saturday. I think we're just going to take Max to the park and sit under a tree and remember her. And I'll donate to the hospital charity in her name. It doesn't feel like enough but I know nothing will.

The other big hospital in our city with a NICU is on a fundraising drive at the moment and there were a few articles in the paper yesterday about the NICU. About miracle babies born at 23/24 weeks that had made it. Articles about miracle babies are bittersweet now (now so many things) - I'm happy those parents got to take their babies home but can't help wonder why they could save those babies but not Matilda. I was grateful one of the articles about one of the specialists there did mention a couple of times there's trajedy in the NICU as well as joy and not all babies make it. People only see the miracle stories and assume everyone gets one. When Matilda was in the NICU friends just assumed it'd be a matter of time till she'd be coming home - not that she was very sick.

This time last year Matilda was alive and kicking up under my ribs on a regular basis. I listened to her heartbeat on the CTG and it went up and down like it should. I wish there was a 'this time last year we bought Matilda home from the hospital' coming up.

Sunday, October 24, 2010

Max and Matilda

Max will be five weeks old tomorrow. I can't believe he's that old already and the early days of his life already seem like so long ago. He wonderful, beautiful, and a million other adjectives.

Matilda's birthday is five days away. I'm crying more and more as it approaches. I don't know what we're going to do and have a feeling that whatever we do it won't feel like enough.

Today I was cleaning up paperwork and realised the letter from our health insurance I opened last week wasn't the payment to the hospital for my recent stay but the payment for Matilda's stay last year. I was about to throw it out when I realised it said Baby Taylor on it and I had a closer look at the dates. I'm not sure why it's taken almost 12 months for the payment to happen. Then I wasn't sure what to do with it - should I keep it and put it in Matilda's memory box? Or throw it away because it's boring insurance paperwork? And then I cried that I even have to go through this thought process - that I have so little of my daughter that I want to keep every single thing that shows she existed - that she's part of our family.

I've seen other babyloss Mum's describe themselves as 'happy-sad' when their rainbow baby arrives and there's really no other way to put it. I'm so happy Max is here, next to my bed, snuggled to chest, on the change table waving his legs but I'm so so sad Matilda was never in any of those places.

And I'm scared no one is going to remember her birthday.

Thursday, October 14, 2010


A year ago I was sitting in hospital half-way through a 5 week stay. I was reading about BWS and making contact with other women who had children with BWS expecting to meet them once our baby had arrived and her stay in the nursery was over. I was dealing with the uncertainities by taking one day at a time and not thinking too much about what was likely to happen once Matilda had arrived. Occasionally I'd have scary thoughts run through my head about what I thought were the worst case scenario outcomes - that'd we'd end up facing childhood cancer (babies with BWS have an increased risk) or she'd have to have trachie in for a long time and possibly come home with one. But I'd put them aside and focus on all the stories I'd read (the majority) about babies with BWS coming home after a few weeks in hospital and there being no major complications down the track.

Instead the worst case scenario was one that hadn't entered my head - that's we'd be at our daughter's funeral the day she would have been a week old.

But now I'm sitting here with Max asleep in our bedroom and DH has gone to the shop for more baby wipes and milk. My days are filled with breastfeeding, nappy changing, and gazing at Max in general wonder that he's here and alive. He's amazing and beautiful and I'm falling more in love with him each day.

I just can't believe a year ago I didn't know the term 'baby loss', that I was in hospital almost at the end of a high-risk pregnancy and calm, and that Matilda was still alive and kicking me up under the ribs each day.

Our angel-care monitor went off tonight for the first time. It was a false alarm but that's really not good for the nerves.

We'll be lighting a candle for Matilda at our hospital's pregnancy loss service tomorrow night for International Pregnancy Loss Day. I'll be thinking of you all and your precious babies that can't be here with you.

Friday, October 1, 2010


Since my 20 week scan with Matilda last July I've tried to focus on taking life one day at a time but in reality I've been wishing the days away and trying to get to a point in the future:
* My pregnancy with Matilda was filled with unknowns that we'd only understand the seriousness of once she was delivered. And I had PE so I was wishing the days away so we could get to a decent gestation because prematurity of top of everything else was just going to make things harder.
* In my grief while I felt like I was never going to feel happiness and joy again I knew rationally time would help me learn to live with my pain rather than my pain consuming me. I remember marking off the hours, days, weeks, and then months. I didn't know when the point would come but I just had this feeling I had to hold on until I could get there.
* My pregnancy with Max was filled with anxiety and each day and week seemed very long. I've said to a few people that pregnancy is very long when you approach it as 'today I'm 8+2' for the entire pregnancy.

I've caught myself doing the same thing a couple of times since Max arrived. Thinking things like 'only 2 days until you're a week old'. And then I realised, I can savour my days now. I don't want to wish Max's newborn stage away. In fact it's almost the opposite, that I'm scared of it all going too fast.

But what a gift it is to be able to enjoy the moments of each day rather than counting them away as I have been for so long.

I'm still crying everyday about Matilda - it's the most I've cried in a long time. Somehow it sits alongside the happiness. I'm trying to accept that's how it's going to be for us. But I can't help feel sad that DH and I never got to experience what it's like to bring a baby home for the first time without this huge grief hanging over us. We sat outside the hospital with Max waiting for my parents to pick us up crying about Matilda and the fact we never got to bring her home.

I was standing outside on our deck today and a huge butterfly was just sitting on the plant beside the stairs. I think it was Matilda saying hello to us.

Wednesday, September 22, 2010

Max is Here

Max arrived safely yesterday (21st September). Very relieved and in love.

Thank you for all your support. C-section was bought forward to 37+1 due to increasing anxiety.

Saturday, September 18, 2010

Not so calm

I'd reached a point where I started to feel a bit calmer but that's completely gone now. I'm 36 + 6 today and my c-section is booked for two weeks on Tuesday at 39 + 1. I feel sick with anxiety and am crying a lot and think I'm going to ring my ob tomorrow and ask for it to be bought forward. She's away the week I'm 38 weeks pregnant so bringing it forwards means making it 37 1/2 weeks or finding someone else to do it. And then I feel guilty because it appears that MB is doing well in there - it's me that's not out here. But I can't stop all the thoughts of all the things that can still go wrong at this stage.

At acupuncture last week another pregnant women came in after me. She was a week and half overdue and when I commented that she must be getting over it she said 'no, I'm happy, he's happy' so we're just going to carry on. And then there's me who's terrified about waiting until within a week of her due date to deliver. Apparently it's not enough that we have to grieve our precious babies but we also lose faith in our bodies and pregnancy becomes a scarey time.

Thank you for your support this far and please send me your positive thoughts and prayers and hopefully our little boy will be here safely soon.

Thursday, September 16, 2010

My Bedside Table

On my bedside table, I have:
* An urn containing my daugther's ashes
* A bear that a friend knitted for her while I was pregnant
* The last scan picture we had of Matilda - DH found it the other day while going through some papers
* The first photo of Matilda after she was born
* An angel statue our neighbour's 7 year old gave us after Matilda died
* A St Gerard medal - patron saint of Mothers and Babies
* Two scan pictures of MB from early in this pregnacy
* The parachute toy the four year old I was looking after gave me 'for when you grow another baby'
* My kick chart
* A charged baby monitor my DH set up yesterday
* Moisturiser, hair brush, deoderant, and lamp

Grief, hope, and everyday life side by side. All of it hard to believe at times.

Friday, August 27, 2010

Someone remind me

That I can't jinx this pregnancy. There's now a white bassinette sitting in the corner of our bedroom where it's going to stay until this baby arrives. Which is giving me a bit of an arrrgh feeling. (and DH frowned when I said I was going to throw all my clothes on the ground over it so I'm guessing the bassinette disguished as clothes horse isn't going to make him happy)

I'm 33+5 today. Tomorrow I'll be 33+6 - the gestation that Matilda's movements dramatically slowed. On Monday I'll be 34 weeks when is when she stopped moving at all and was delivered that night. And I've just realised that Monday is 10 months since Matilda was born - I knew it was next week but not Monday. Mungie normally kicks a lot so I'm just hoping that he keeps that up or there's going to be panic by me.

I'm feeling more emotional and crying more about Matilda lately - I don't know if it's approaching her birthday or just getting towards the end of this pregnancy. I still have moments where I can't believe it happened - that we survived the complicated pregnancy, she was here, and then she died.

Matilda - we miss you and nothing is ever going to change that. xx

Sunday, August 15, 2010


Today I'm 31 + 6. We have a room full of baby stuff. We have two boxes of newborn nappies. I'm thinking that I need to wash the baby clothes soon before I get really big and uncomfortable. I've put the ob appointments for the rest of my pregnancy into our calendar (have been doing them one at time until now). Yesterday we went to a breastfeeding class.

To everyone else, I look like a soon to be Mum getting ready. And sometimes for brief moments, I feel like one. Like there might actually be a baby to breastfeed in less than 9 weeks. That our lives might be about to change again in ways we can't imagine.

But then there's other things that only someone who's lost a baby is going to have running through my head. The fact I'm worried that we don't have anything really special to dress him in when he's born - I'm not worried about clothes normally but then I worry 'what if we only get to dress him once, then he needs something special'. I haven't even told DH this, I know it would make him cry so instead I talk about the fact we need a 'coming home outfit' for him.

I'm going to start cooking frozen meals so we'll have food that just needs heating up when he arrives. But equally I remember how I didn't feel like cooking for months and months after Matilda died so I figure they'll be useful whatever happens.

It's DH's birthday today and I bought him two newborn outfits. I haven't spent a lot of time looking at baby things - I find it hard but on Friday I was wandering around the baby department looking at clothes. I feel like an imposter - like someone is going to tap me on the shoulder and ask what I'm doing there. There was another pregnant women there with her Mum walking around looking at things like she had every right to be there.

And yesterday as I sat in the breastfeeding class I realised just how desperate I am for this happy ending and to actually use the things we have and parent a living child. The sheer terror that we might not get that and be thrown back into the overwhelming grief that our life has been since Matilda died. The realisation that that's just what all the other pregnant couples in the room are expecting. That that's how pregnancy is for most people. But not us.

We have a scan tomorrow morning. I'm trying not to think about it.

On 2 Metformin tablets a night now to try and bring my fasting levels down. So far it's working - fingers crossed it remains that way.

It seems like a long way to go in this pregnancy but at this stage with Matilda, my pregnancy was almost over. Her movements slowed dramatically at 33+6, stopped at 34+0, and she was delivered that night. I'm assuming that I'll feel more anxious as we approach that point.

The sun is out and the days are beautiful at the moment. It's helping. And I'm about to go out for my (slow) walk.

Thursday, August 12, 2010

hi Joey (no need to read anyone else)

If you're reading this, can you please have a look at the note above and stop.

I know you may be justifying this by telling yourself that reading this will help you understand what I'm going through so you'll be able to help me. But that's not why I write here and it will harm not help our friendship.

I don't want to hurt you so I really hope you're not reading.


Monday, August 9, 2010

Thank you Steph

Steph who's Sybella's Mum has written a post about the ultrasound picture I posted a few weeks ago with Matilda kissing her little brother. Thank you for writing about Matilda and your amazingly kind words Steph.

Maddie x

Monday, August 2, 2010

30 Weeks

Well here I am and 30 weeks pregnant. I'm not really sure how I've made it this far but I have.

My emotions are starting to go up and down more now and I'm not sure if I'm coping as well. It's starting to play on my mind that it's a long way to go still. Or seems like it is. Now I've started this post I'm struggling to put coherent thoughts together....

At this stage in Matilda's pregnancy I was already in hospital with PE so have passed another milestone and my BP is still low at this stage (100/60 yesterday). Having bloods done on Monday to check them as well.

Had three high readings in a row last week for my GD and freaked out. But have changed my diet slightly (back to eggs for breakfast every morning) and that seems to be working so far. Was convinced that it was the start of it escalating and me heading for insulin but touch wood it seems to have just been a bad day. Rang my endo and she was lovely and reassuring and said I can ring her whenever I'm worried.

Went to a first aid course in the weekend. It was focused on kids so I was thinking there might be other pregnant women there but I did not expect a couple with their four month old baby and a 35 week pregnant couple. I was not coping too well while we were standing outside waiting to get in. They straight away engaged each other in pregnancy and baby conversation while I just stood with DH and avoided eye contact. It made me realise just how different pregnancy is for people who haven't been through loss or complicated pregnancies. She's just talking away about their labour plans and how do you find mothers groups and which movie theaters have babes in arms sessions. All things I can't even think about. I'm sure they thought I was a snob.

For the first time we went to a baby shop and now have a change table, monitor and couple of other things. That wasn't actually as bad as I thought it would be and even fun at times. Thankfully no staff members asked if it was our first baby.

Yesterday we went back to the hospital for the first time for our antenatal appointment with the bereavement midwife. She supports people in subsequent pregnancies so is going to run us through the relevant antenatal course content in a few fortnightly one on one sessions. I was OK when I arrived and then we said we were their to see the bereavement midwife, the midwife asked me 'are you OK' at which point I just wasn't. But the bereavement midwife was lovely, answered all our questions, got the doppler out so we could listen to Mungie's heart and took my bp, and said I can ring her and go in for monitoring anytime I'm worried. So felt a lot better after seeing her and am looking forward to our other appointments.

Have another scan coming up in a fortnight which I'm starting to get nervous about.

I still have to sort the nursery out so we can start putting things we've been buying for Mungbean in there. I was going to do it today but I'm feeling a bit tired and fragile already so have decided to leave it for the weekend.

We are counting down the weeks now....

Thursday, July 29, 2010

9 Months

Matilda - Today it's 9 months since you were born. It feels like forever and like yesterday all at the same time. I met some nice women at SIDS today and told them all about you. I cried a lot - I'm still so sad about everything you went through and that you're not here today.

Your Daddy is so proud of you. When people ask if your brother I'm pregnant with is his first baby he always says no and tells them about you.

We both love you and miss you so much. I hope you're having fun up there with all the other angel babies.

Your brother is getting bigger (well I hope so because my belly definitely is) and we know you're watching over him and helping him to get here safely.

Love Mummy xx

Friday, July 23, 2010

12 Months Ago Our World Fell Apart for the First Time

It's 12 months today since our 20 week scan where we first found out Matilda had an omphalocele. At that stage we had no idea what the implications were and we thought it probably just meant surgery after she was born. Oh how I wish that'd been our biggest concern. Even if that had been the case, our innocence in pregnancy was shattered forever and scans became a thing to fear. The week following that scan was easily the worst of my life other than the week Matilda died. I'd gone from putting books on hold about active birth and looking up pregnancy yoga classes to reading stories about terminations following 20 week scans finding major anormalities. I felt Matilda move for the first time in this middle of the scan, amino, and waiting for the results. Instead of it being a joyful thing to share with my husband, I didn't tell anyone because I was just so terrified of what was going to happen next.

It’s been 12 months of anxiety and having to deal with people just not understanding. 12 months ago yesterday I was still that naive innocent girl who assumed we’d be bringing home a healthy baby in time for Christmas. I can barely even remember who I was then.

A part of me wants to say it's been the worst 12 months of my life but how can I say that - it was the 12 months where I had my first child, my husband feeling a child of ours move for the first times, and I held my baby girl. I still don't really understand how we've survived but we have.

Matilda - I wish you were here. We love you more that ever. Mummy x

Tuesday, July 20, 2010

A Dad's Grief

DH's grief has always been different to mine. From talking to others and reading, it's different in the typical ways that female and male's grief generally is. I've always talked about it more, cried more, and have turned inwards rather than outwards from non babyloss friends and things I used to do. His reaction was to go back to work and try to stay busy. I'm lucky in that he does show emotion and talk about it a lot more than some other men. It's just been that generally it's only when I've instigated conversations about it. Some in ways, he hasn't had a choice. I was such a mess in the early weeks and months, that he had to be the strong one, return phone calls, do the grocery shopping, and all those other things that don't stop just because your baby died.

Lately though he's been bringing up Matilda a lot more. I'm not sure if is just his grief surfacing after a period of time, or my pregnancy progressing is bringing it all up for him, or the fact I'm coping better these days means he feels like he can. It helps me to know he thinks about Matilda so much but breaks my heart all over again to see him crying about the daughter he's never going to get to hold again. The other day a friend asked me to reply to a comment on her blog from someone who felt a early miscarriage was just a painful as a stillbirth or neonatal death and they were jealous of us having funerals and acknowledgment of our babies. My point here isn't to take away from the pain of miscarriage. I know it's devastating. But I don't think you can say you know how I feel if you've had an early miscarriage. I told DH this and he stood there with tears running down his face and said 'How could anyone be jealous of me, I had my daughter for four days and then watched her die'. Grief is selfish and sometimes I forget just how much he hurts.

Sunday, July 18, 2010

Messages from Matilda

One day last week I was putting the last of Matilda's photos into her album. DH came home from work and we both cried and then I put the album away. Shortly after he came back inside with tears in his eyes and showed me my star sign from that day's paper. It was:

The last sentence in particular comforted me. DH has been very emotional about it and has showed a lot of people.

Last Thursday we had a scan (to check the growth now I've been diagnosed with gest diabetes). We got a few really good pictures and then the last one was this one:

As soon as DH looked at it, he said 'It looks like there's two babies in there'. I didn't really see it to start with and then he said look on the right and it looks like there's another baby in there giving Mungbean a kiss. And it does. We think it's his big sister.

Like so many things, all these moments are bittersweet. The scan picture in particular - I so wish Matilda was here to grow up with and give her little brother lots of kisses.

Thanks for letting us know you're out there Matilda. We love you and think about you all the time.

Wednesday, July 14, 2010

Friday, July 9, 2010

Gestational Diabetes and a Meltdown

I have GD. I know it can be managed but when my ob's office rang with the results from the short test I completely melted down. When I was pregnant with Matilda, GD was the start of a run of bad news - GD at 26 weeks, Matilda being diagnosed with BWS at 28 weeks, and me getting PE and being hospitalised at 29 weeks. So that phone call just put me right back there and it wasn't good - I got on google and started reading about all the associated risks which was a bad idea. DH rang me and I was so upset he couldn't understand me and came home from work.

I've since calmed down but my anxiety levels have definitely gone back up and I'm feeling much more fragile generally. My endo is away this week but I'll be calling and can hopefully get an appointment next week. I'll be asking her if she recommends extra monitoring and delivery earlier than 39 weeks.

I've started following the diet and testing. I've had a couple of slightly high results (7.5 & 7.8) but my food choices weren't the best so hopefully I can get it under control with diet. I need to go shopping and get organised.

Other than the GD, things are continuing as normal (as far as I know). I'm 26 weeks now and feeling lots of movement which is wonderful. I'm actually starting to feel like I'm really pregnant - odd I know given that I'm just about in the third trimester. I've bought a book for Mungbean and DH went to the baby expo (took his sister) and got a few different MCNs for us to try.
We passed through Matilda's 8 month birthday and it didn't send me down a black hole but I think about her all the time and still have trouble believing what happened - our baby girl died, how is that even possible.

When I first started reading blogs and glowinthewoods shortly after Matilda died and all I felt was overwhelming pain I couldn't imagine making it to here. But I have and I see new blogs and names on glow and just feel for those women going through that pain and know that nothing I say will really change it.

Friday, June 18, 2010

12 Months Ago

12 months ago I was about 15 weeks pregnant and we'd had a good 12 week scan with no indication of the problems to come. 12 months ago I assumed that a good 12 week scan meant we were going to be bringing home a baby in December. That my biggest worries were going to be deciding whether I wanted an epidural and would the baby be so late I'd still be in hospital for Christmas. 12 months ago we'd sent out text messages and emails telling everyone we were pregnant - we were in the safe zone, why wouldn't we.

Now here I am, 23 weeks pregnant and barely able to hope that we'll be bringing a baby home. I haven't told anyone I'm pregnant except people I actually see (I've run out of outfits that hide it) and because I'm not very social anymore, that's not many people.

Yesterday I packed away all my normal clothes and got my maternity clothes out. It's pretty much exactly 12 months since I did this last time. Last time it was exciting. This time, I was thinking - I hope I'm not bawling and packing this up again soon. I was thinking - the last time I wore this, Matilda was alive and we thought she'd be coming home with us and sleeping in the room next door.

12 months ago I was so happy - we'd just got married and were expecting a baby. We'd joked that our first wedding anniversary wasn't going to be a flash night out because we'd be at home looking after a baby. Life couldn't really get any better. Now that all seems like a dream.
But the pregnancy is going as it should so far. I'm 23 weeks now. I saw my ob this week and she doesn't want to see me for another month. It seems weird to be this pregnant and not be seeing doctors all the time. Mungbean is kicking (and I am freaking out when he's not). Despite everything I said above, we've started talking about the things we need to buy/organise before he arrives so I must have some hope that he will be coming home with us. DH is at the baby expo today - he wanted me to go with him but it's full of pregnant women and babies and worse, we went last year and then I was pregnant with Matilda.
I am starting to feel more like myself at times. I'm working a bit more (2 days a week) and going into the office 1 day a week. I've seen a few more friends recently. My Mum and Dad are coming in just over a week and I'm excited about that.
So really, it's mixed emotions everywhere and just doing my best to try and stay on an even keel.

Wednesday, June 2, 2010

Inner Peace and What I Want

Went to a meditation class yesterday and each week we select a card from a deck on the basis of 'What do I most need to know'. This week I pulled out the 'Inner Peace' card. I would love some inner peace - it seems so very far away right now. But to try and create some, I'm going to try and spend 30 minutes each day on tidying up/decluttering the house. I tend towards mess but do feel better when I look around and things aren't so chaotic. Yesterday I tidied our bedroom. Today I'm going to start on something that's been needing done for some time - putting Matilda's photos into the album I bought for them. I've been putting this off because I have no doubt that it's going to take me back to that place of heart-wrenching sobs and wishing it had been different. Wishing that my baby's first photo album didn't also contain photos of her funeral. That the first photos of us holding her hadn't been as she was dying.

Also, our meditation teacher said we need to ask the universe for what we want. And that it's OK to want. Well universe, here are the things I want:
* To bring home a living baby from the hospital this year.
* To be able to have some moments of calmness where I can actually enjoy this pregnancy.
* To nuture my body with good food, enough sleep, and whatever else will help me physically.
* To have people around me that understand or can be emphathetic about how hard this pregnancy is for me. For those that can't understand, to give me space.
* To honour Matilda's memory and have her know that we love her.
* To make and keep my house a calm and nuturing space.

Tuesday, June 1, 2010

Bits and Pieces

It's been a while since I've posted - not sure why but things seem to have settled into a 'sameness'. I'm not sure whether that's good or bad but that's how it is.

7 months since Matilda was born came and went on Sunday and tomorrow will be 7 months since she died. This is the first month that hasn't thrown me down a black hole. That in itself makes me sad because it makes her feel further away.

12 months ago I was over 12 weeks pregnant with Matilda. We'd had our 12 week scan and everything was looking good. I'm a naturally cautious person and we didn't tell anyone (except immediate family) until after 12 weeks and I don't think I really started believing it myself until then. So 12 months ago I was living through the 8 weeks where I really thought we'd be having a baby and bringing that baby home. We told people, I emailed friends overseas, relatives sent cards, and life was good. I can't believe I was that person just 12 months ago.

DH's Mum had a baby girl before him (he's the oldest) who died the day she was born after an uneventful pregnancy. Her 32nd birthday was last Friday. I've always known about Michelle and my MIL had talked to me about what happened before we ever pregnant but this is the first year I've known her birthday. Things were different back then and my MIL never got to see her, doesn't have a picture, and the hospital held a service for Michelle without inviting either of her parents. That breaks my heart.

Michelle - Happy Birthday and I hope you're having lots of fun with your niece Matilda up there.

My BIL's 30th was on Saturday. It was an afternoon thing and it's the first social event I've been to since Matilda died. I wasn't really looking forward to it but I did survive. I only went for a couple of hours and made DH sit with me the whole time. I see close friends one on one and when I'm at home, feel like I'm 'OK' a lot of time. But going out made me realise that really I'm not. I found it hard to talk to people and I seem to have no idea how to socialise anymore. From someone who used to be extremely extroverted and is known for talking a lot. It made me sad and made me wonder if I'll ever be that person that loves being social again. One of DH's relatives tried to engage me in pregnancy talk by asking if I'd had any morning sickness and when I said no, started down the track of 'how lucky, I had heaps'. Said while her daughter sat beside her. I didn't point out to her that I would've exchanged all the horrendous morning sickness in the world to have Matilda with me now. I just changed the subject. It is really such a big mental leap to figure out that for people who've lost a baby, that morning sickness isn't really their big pregnancy worry? Ugh.

Matilda - I can't believe you'd be 7 months old now. We love you and miss you. xx

Heartbreaking - Wyatt River

Wyatt River has joined his brothers in Heaven. The world is a heart-breaking place at times.

Saturday, May 22, 2010

Why does my mind work like this?

I have a lot of good memories of Matilda's life and my pregnancy with her. In fact, in that early fog of grief I wrote them all down in a document I was so scared of them slipping away. I've never re-read the list but I know it's there. It includes things like:
- Finding out I was pregnant
- Our very first scan at 11 weeks
- The first time DH felt her move
- Seeing her for the first time
- Finding out they were feeding her

But whenever my mind wanders, I don't end up in those memories. I end up in the memories that no one should have to live through:
- 'You might lose your little girl'
- 'It's now inevitible she's going to die'
- Watching DH break down when we picked up her ashes
- Ringing my neighbour and having to say 'Matilda didn't make it'.

Why is this? Why can't my mind naturally turn to all the good things about Matilda's life?

Monday, May 17, 2010

I'm Back

I'm back from two weeks holidays in NZ with my family and caught up with some old university friends. I've been reading but not commenting to try and give the holiday a chance to be a distraction and for a fair bit of the time that worked.

I'm glad Mother's Day is over - the constant reminders everywhere were pretty painful as echoed in everyone else's blogs. I just pretended it wasn't happening which meant on the first Mother's Day I've actually spent with my Mum in years she didn't get a 'Happy Mother's Day' from me. But she understood and was just happy to have me and sister with her on that day for a change (we all live in different places).

And when I thought about the fact this should have been my first holiday to NZ with Matilda to show her off to everyone, the tears came. There's just so many things about this that are painful.


On a completely different note, I had my 19 week scan yesterday and everything is looking good at this stage. I was pretty emotional yesterday and pretty much cried through the entire scan but it's starting to sink in today that it was good news. We're booked in for a growth scan at 32 weeks which is 13 weeks away! If I can make it that far, it'll be the longest I've ever gone between scans in a pregnancy. I'm also feeling more movements now which is lovely.

I've been thinking of you all and hope the days are becoming more gentle now Mother's Day is over. I had no idea a simple holiday could be so painful for so many people this time last year.

Thursday, April 29, 2010

Six Months

Six months ago today you came into this world. We had so many things we wanted to do with you - watch you learn about this world and love you everyday. We still do love you everyday but instead of watching you learn about the world, we're trying to learn how to live with this pain as part of our lives. I wish it had all been different and we were today talking about how fast six months had passed and marvelling at how big you were. Instead it's been the hardest and longest six months I've I had to survive. I try to remember all the happiness you bought us but sometimes that's hard - I hope in time the good memories will shine brighter than the awful ones.

Matilda - we love you and always will. xx

Sunday, April 25, 2010

Depression and Anti-depressents

My pysc thinks I may have mild depression and wants me to go on anti-depressents. I'm not sure if I'm actually depressed and even if I am, not sure if I want to go on anti-depressents for mild depression. His reasons are that I'm exhausted all the time (it hasn't lifted now I'm out of the first trimester), less interested in food (I'm still eating but it feels like a chore sometimes), social isolation, and general low mood. I think that perhaps 3 out of 4 of these things are 'normal' for someone in my situation.

I still do enjoy some things and have good days which makes me think it's not actually depression. I'm able to do my job and concentrate. But then I have low days and think maybe it is. Most days when it gets to mid-afternoon regardless of how I've been during the day I normally think 'good, the day is almost over'. But again, I wonder if that's just normal for someone who's pregnant after a loss.

Do any of you have experience with anti-depressents you're willing to share with me? I guess mainly I'd like to know when you decided they were necessary. A big thanks to anyone that is.

Sunday, April 18, 2010

Keeping Busy

Just after Matilda died, well meaning but misguided friends and family kept telling me I had to 'keep busy'. Like if I kept busy, I would somehow forget about my grief. And also, I think it made them feel better if I was doing stuff - like I was OK again. I resented it for a couple of reasons. I didn't want to forget my grief. Yes the pain was overwhelming at times but I wanted to feel it - I didn't just want to keep busy and pretend I wasn't overwhelmingly sad because Matilda died. Also, the grief was so all consuming in the early days that keeping busy just wasn't an option - I literally couldn't concentrate on anything that wasn't about Matilda, grief, or other people's stories about losing their babies. I know this mightn't be the case for everyone - my DH in particular wanted to keep busy and go back to work. I'm generalising but this seems to be how a lot of males cope.

But now, 5 and 1/2 months down the track I am starting to feel like keeping busy does help some of the time. Especially as I try and keep the anxiety about my pregnancy down to a dull roar. So I am planning to start working a bit more and go into the office once a fortnight (I'm working from home the rest of the time), I am organising to see close friends I feel comfortable around a bit more, I am planning to get out with DH a bit more, I have started knitting, I am reading more books, I am going to a meditation class once a week, and I am excited about Masterchef starting again. I was going to the movies for a while but there doesn't seem to be anything I want to see on at the moment.

Just wondering what everyone else does to 'keep busy' if that's something that helps you?

Saturday, April 17, 2010

My First Blog Award!!

Thanks Maggie for my first blog award! Just told DH about it but I'm not sure he understands the concept.... But he did comment that he should feature heavily in the list.

Maggie - your comments have helped me on many dark days. Thank you for you support.

The rules of this award are:

1. copy and paste the award on your blog.

2. list who gave the award to you and use a link to her/his blog (or hyperlink).

3. list 10 things that make you happy.

4. pass the award on to other bloggers and visit their blog to let them know about the award.

Ten Things that Make Me Happy
1. My Husband
2. Matilda
3. Mungbean
4. Reggie (my very cute labrador)
5. Supportive family and friends (IRL and here)
6. Cooking
7. Reading
8. Being outside in the sun
9. Coffee (though I haven't been drinking much lately....)
10. My neighbours kids

Passing this award onto:
Rebecca at Life Goes On

Thursday, April 15, 2010

Freak Outs this Week

In the last week I have freaked out about the following things:
* Cleaning the bathroom
* Burning scented candles
* Burning mosquito coils
* Not gaining any weight so far
* Lifting groceries

I am pretty sure I did all of these things last time and didn't give it a second thought. I was talking to my Mum on the phone the other night and half way through this list she cut in and asked 'When are you seeing your pysc again?'. So my mother thinks I'm crazy.

Is it just me? Or is everyone more neurotic after loss? And as much as I love the internet it seems for everything you do, you can always find at least one page saying it's a bad idea.

Note to Universe

I am doing my best from my end and trying to align my will with yours. But I really really need you to get on board.

(from my meditation class tonight - off to bed now - will be back with the rest tomorrow)

Tuesday, April 13, 2010

You'd think I'd know by now

That eating really hot soup burns my tongue!!

Nothing more profound today. Was going to write about my long list of freak outs this week but am going to leave that until tomorrow :-)

Sunday, April 11, 2010

My Wish For You

Years ago my Nana sent me a card for my birthday. I can't remember when exactly but it would've been 5+ years ago when I was still in my early 20's and single. I had it on my wall at work for years and now it is on our fridge. It reads:

My Wish For You

When you are lonely
I wish you love
When you are down
I wish you joy
When you are troubled
I wish you peace
When things are complicated
I wish you simple beauty
When things are chaotic
I wish you inner silence
When things look empty
I wish you hope.

The last couple of lines in particular really speak to me now. But I wish all of those things for all of you - love, joy, peace, beauty, inner silence, and hope.

Saturday, April 10, 2010

Facebook Ads

I have two ads showing on my facebook profile at the moment:
1) Get in Your Skinny Jeans
2) Get pregnant naturally

Weird. Looks like their just trying to cover there bases either way.

Spent all day yesterday fighting with DH about things that really shouldn't be upsetting me that much. Rationally I know it's the stress coming out over things it really shouldn't and that this is also hard on DH but emotionally I just don't seem to be able to do anything about it. Obviously not totally zen from the meditation practice just yet.

Went out for breakfast with DH this morning and splashed out and had a latte. It was good! The last one I had was on my birthday so it's been a while.

Thursday, April 8, 2010

Thanks and Meditation

Thanks for your lovely comments and support (B your's did come through ;-)) - it means a lot to me.

At meditation last night we got half way through it and suddenly I felt like it was hard to get deep breaths into my lungs. It was quite intense and uncomfortable. But then as the lady who takes our group started saying 'just be receptive' I suddenly had a thought 'Matilda is here'. And all the weight was gone from my chest and I could breathe deeply again. Apparently we hold our grief in our lungs.

Matilda - I hope you are here.

And Mungbean - I hope you are too.

I love you both and I can't really explain how much the reality that I can't have both of you here hurts. So just know that I love you both.

Tuesday, April 6, 2010


I imagine you've already guessed what my news is. I'm pregnant. 13 weeks now. It seems to have taken forever to get to this point but equally surreal that I'm here and my belly is starting to grow. I'm having trouble believing it's happening and huge up and down emotions. To be expected I'd imagine.

I'm terrified and the link between the idea of being pregnant and having a baby seems very tenuous. We've started telling some people and they're first question is, when's the due date. Meanwhile I'm just counting down the days to the next appointment and a fortnight seems like too long.

I'll be writing about my pregnancy here - it changes my grief. It doesn't remove it or even lessen it but it does change how I look to the future. On good days, I have hope that there will be a baby at the end of this. I keep reminding myself that's how it works for most people.

I told my friend who's boys (almost 3 & 4) I've been doing kindy drop offs and pick ups for (12hrs a week) that I'll keep doing it until the end of May (just past 20 weeks). She knows I'm pregnant but obviously thought I'd carry on a lot longer than that and was disappointed. I don't think she understands just how terrifying this is for me and how scared I am of catching something from the boys that will hurt this baby. So I sent her an email:
Thought it might be easier to try and explain in an email. I know I seem fine to you but being pregnant again is extremely difficult for me. You'll thankfully never understand what it's like to be in my situation and I don't expect you to understand. But everyday I have to live with the fear that this baby will die as well and honestly, I don't know how we'd deal with that. I still cry everyday about the fact that Matilda isn't here and then I feel guilty for this baby that I desperately want as well. I love looking after the boys but I'm scared of getting sick from them. I completely freaked out when I was 6 weeks pregnant and the boys had colds and was almost going to tell you I couldn't look after them anymore then.

I'm expecting my anxiety to grow as we approach the 20 week scan (assuming we make it that far) because that's where things starting changing last time. Matilda's 12 week scan was fine so a good 12 week scan this time hasn't done nearly as much as last time to reassure me.

But there's hope and while that might not be showing through above, I'm trying to remember that.

Change of Scene

We've just come back from Easter away with DH's husband. My pysc thought a change of scene could help with the black hole I fell back down and it did. I never stop thinking about it but to be somewhere else somehow makes it a bit more distant. It also meant we could hide away and didn't have to do any Easter celebrations or crowds which was good.

In my next post I'm going to have some news which I think may see some of you no longer continue reading. If that's the case, a heart-felt thank you for your support and comments. I can't really put into words how much the comments from someone who's been there has helped me. And I wish you happiness and love in the future. Maddie x

Wednesday, March 31, 2010

I thought these days were behind me

Where I spend so much time crying, my eyes are puffy hours later. Where no matter what I'm doing, my mind just goes back to Matilda and what happened. Where I cry so hard, it feels like I can't keep breathing. Where just getting through the day takes all of my energy.

Just after I posted about 5 months and thinking that I was doing better these days, I fell back into this endless well of pain us babyloss Mum's seem to have inside of us.

We've had incrediably good news this week, we're going away for Easter, and are lucky in so many ways. But all I can think about it how sad I am, how much I miss Matilda, and how much I wish she was here.

My pysc suggested that perhaps I need to start finding some ways to say goodbye to Matilda. I thought I had but the reaction I had to that suggestion makes me think I haven't. And I don't want too. I can't believe I'm living a life where saying good bye to my baby was necessary.

Sigh. Here's hoping that as the dates once again roll past these dates when Matilda was alive that I can be thankful for what we have and what we have to look forward to again. And feel the love I have for Matilda without so much of the pain.

Monday, March 29, 2010

5 Months

5 months ago today Matilda stopped moving inside me. Those feet up on my right side that I loved feeling stopped kicking. She was delivered that night and it turns out my placenta was failing rapidly. I try not to think about how I would feel if she hadn't been delivered alive even though her short life was spent in the NICU and filled with tubes and machines. I can only hope she felt the love around her.

As time goes on, it seems more and more that this is the way it was always going to be and less like I should have a living baby. Like I've always been in this place, this parrallel universe where I'm this quiet person who'd much rather stay home than spend time in a crowd. That's patting herself on the back because yesterday she managed to go to the shopping centre for the first time since shortly after Matilda's death. This person that when a Mum with a pram goes past, swivels her head to see if the baby is a girl and how old it is.

For the most part, I'd say I'm doing better. But I have a pretty low bar for what better is these days. It's a day where I get something done (making my bed and cooking dinner qualifies as 'something') and then read a book quietly for the rest of the day. The other day, I saw a movie and there's a scene where she's driving along in the car singing loudly to whatever is on the radio, looking happy and I thought 'I can't imagine being that person again'. I can only hope that one day I'll make it to that place where I feel really, truly happy again. It seems like a very distant spot on the horizon currently.

Matilda - after 5 months, all I know is that I love you and I wish it had been different. I wish you were here. Please watch over us tomorrow.

Thursday, March 25, 2010

Take a Leap of Faith

At meditation class tonight I pulled out the 'Action' card. My interpretation is that there hasn't been a lot of action in my life over the last few months - which is fine, I've needed this time. But I think it's starting to get to the point where maybe there could be and that would be a positive thing for me.

I've only been to this group a couple of times and they don't know what's happened. I've alluded that a few months ago something happened and I'm trying to recover from that. When we walked out, one of the other women came up to me and said 'Take a leap of faith' - she didn't want to say it in front of everyone. I told her thanks and just thought about how true that is for me - subsequent pregnancies for baby loss Mums are basically that 'a leap of faith'. So that's going to be my mantra for now 'Take a leap of faith'.

Sunday, March 21, 2010


Over the last couple of weeks I've noticed some of the fog lifting and I'm starting to feel more engaged in my life again. I can be talking to people and be present now rather than going through the motions and in my mind going 'my baby died'. I cleaned the house yesterday and I've been cooking a bit more as well.

I went to the park with my neighbour and her two boys this morning. These are the two boys I look after so I'm fine with them. And I was actually OK at the park. I had a few moments of 'I should have a baby' but it was manageable. I don't know if I would've been able to do that even a month ago. Little girls still break my heart though.

On the other hand, I can't believe it's almost 5 months since Matilda died. Where all that time has gone and how I've survived it, I don't know but I have and I'm still here, breathing, crying, wishing it was different, laughing, and hoping that my future holds a living baby.

DH told me he broke down in the car in the weekend. I asked if something in particular had triggered it. He said yes but he couldn't tell me because that was going to make him break down all over again. It breaks my heart that he still hurts so much but it also comforts me that he's so obviously heart-broken over losing our daughter as well. I'm not sure how I'd cope with a partner that locked it all away.

I'm nervous about Easter. We're going down to DH's parents and staying for three nights. I get on with them well but I spend so much time alone now that I find it really hard being around people for extended periods of time. And they're not a family to let 30 seconds pass without talking. So we'll see how we go. I'm also worried we'll be expected to go and see other family down there as well which I've already told DH I don't want to do. Last Easter I was pregnant with Matilda but it was very early days before we'd told anyone. One of DH's aunts had bought a bottle of bubbly to share with me and I spent the whole day secretly tipping it out. Back when we assumed there was no reason why pregnancy wouldn't result in a healthy baby for us. What a difference 12 months makes.

So some things are better, the down swings are still way down, and this journey still feels very long and exhausting. But I'm going to try and take some hope in the things that seem better. For now, they are the best I can do.

Friday, March 19, 2010

Meditation Class

I went to a meditation class with a friend on Thursday night. It was good and I think I'll make it a regular thing. The first thing we had to do though was contemplate the past 12 months and how it's changed us. I had to take a fair few deep breaths to get through this without breaking down and keeping the tears to a manageable amount running down my cheeks. I wish I could say the last 12 months has changed me in only positive ways and now I appreciate every minute of my life because I know how fragile it is. But I'm not there and not sure if I ever will be.

I've changed in the following ways:
* My innocence around pregnancy and childbirth is gone
* I don't have a lot to give to my friends anymore
* Instead of books I'm reading on my bedside table, I now have an urn of my babies ashes.
* I've gone from extremely extroverted to extremely introverted
* I'm much more cautious and worry much more about things happening to those I love
* I'm much more aware of all the heartbreak there is out there around having babies
* I'm more protective of myself and my time. If I don't want to go to whatever it is, I'll just say no

I know all of these changes won't be permanent but some of them are here to stay.

We did another meditation where we focused on the parts of our bodies. As we went through this, she made a comment that grief is held in our lungs. I wonder if this is why so many of us have anxiety attacks that seem to play out as trouble breathing?

We did a card reading where we all took a card and tried to interpret it for ourselves. I pulled out 'Self-discipline'. When I looked at it, I thought 'why should I have to be self-disciplined while I have to learn to live with Matilda dying'. So when it was my turn to interpret I said I couldn't really see it as something applying to me at the moment. Enhsa said that sometimes self-discipline can mean the discipline of giving ourselves a break and maybe I should start with random acts of kindness to myself. Well that sounded much better and I've decided to start trying to find some happiness again without the guilt that normally accompanies it. Whether this is possible yet, I'm not sure. But I can try.

Monday, March 15, 2010

Why me? Why us? Why Matilda?

Last week I was coping and even felt 'normal' at times. I went to my book club and for the first time since Matilda died actually felt like I was there and enjoyed it instead of it being this weird surreal experience.

This week I'm back to crying all the time and stuck in the 'why us' frame of thought. A friend had her baby on the 24th of Feb. I knew she was having the c-section then but hadn't got in touch with her. DH kept asking if I'd heard from her but I just kept putting it off because I wasn't sure how I'd feel. I should feel nothing but happiness for her because they had a long TTC journey (almost 18 months). I remember feeling really bad having to tell her I was pregnant when she still wasn't. She emailed yesterday and said she'd been putting it off because they'd had a little girl and she thought it would've been easier to let me know they'd had a little boy. Which is true - I find it much harder around baby girls. I am happy for her but just so sad for us.

Then last week at book club, one of the girls was telling me one her friend's little girls has BWS. This is a weird co-incidence because BWS is so rare. This girl is 3 and my friend has known her for a couple of years and never knew anything was wrong with her. They got talking and the Mum mentioned she had a syndrome which meant regular visits to the hospital for screening and then my friend realised her tongue protuded and asked if it was BWS. The Mum was shocked my friend had heard of it. So not only was Matilda incrediably unlucky to have the syndrome in the first place - it just reinforced that most babies that have it are OK in the longer term. This girl is just a normal little 3 year old.

I burst into tears on DH last night after telling him about my friend's baby (I thought I was OK up until that point) and then he was surprised to find out I still cry everyday. Not for hours on end but at some point every day, I end up thinking about what happened and end up crying.

Monday, March 8, 2010

Seasons Are Changing

I'm in Australia so this is probably going to be upside down for a lot of you....

Matilda died just as summer was starting. Summer has always been my favourite time of year. I like the heat, all the barbies and socialising, and drinking wine in the sun. The summer before this one was particularly good - it was leading up to my wedding so it was filled with lots of get togethers, hens parties, and finished with our wedding. I'd imagined this summer would've been filled with the wonder and life-changes a new baby brings. Instead it was swallowed by grief. I spent most of it inside with this laptop, books on baby loss, and lots of DVDs. The bright endless sun seemed like a kick in the face to my grief.

For the last week it has rained and rained. That's unusual here - it doesn't really rain for days on end ever. But it did and finally the weather seemed in sync with my mood - the logical thing for everyone to do was just say inside and close to home. Not just me.

Now the rain has stopped and the sun is back. I've been hanging out washing but there's that definite change in the air. It's no longer summer. And it makes me sad how far away I'm getting from those days when Matilda was here. In the beginning, I was desperate for time to pass, just clinging to the fact that surely time would help dull that sharp, raw, almost physical pain I felt all the time. And it has. But it's also taking me further away from her.

Sunday, March 7, 2010

Things to Tell Myself

The things I can control are:
* Am I eating well?
* Am I drinking enough?
* Am I sleeping enough?
* Am I doing kind things for myself?

These are the things I need to focus on. On that - just wondering what nice things others do for themselves? And to distract themselves?

I'm going to acupuncture once a week and have plans to start walking my dog each day (this has fallen by the wayside somewhere) and trying meditation. And I've watched more DVDs in the last four months than the previous couple of years.

Saturday, March 6, 2010

And So It Begins

The dates of my last pregnancy have started rolling through. Yesterday March 6 was the first day of my last period and the date I quoted to doctor after doctor.

I feel sad, introverted, and withdrawn most of the time still. But yesterday I went out for coffee with my SIL and two of her friends and I talked and laughed. There was only one moment where we were discussing a friend who's engaged to someone that already has kids. And whether those kids would be at the wedding. I almost said 'If I had kids then I'd want them at my wedding'. In the next moment I caught myself and didn't say it.

Wednesday, March 3, 2010

Matilda's Life

At 2344 on Friday the 30th of October, Matilda entered this world. As expected (we'd spoken to Helen the neonatologist at 28 weeks) she was taken straight to the resus room. DH caught a glimpse of her over the curtain and though he didn't say anything to me at the time, he saw the sac around the omphalocele had burst. This was the first thing that made things more complicated than expected. If the sac had stayed intact, the bowel could have been either returned inside without surgery or if surgery was required due to the narrow base, this could have been put off for a couple of days. Because the sac had burst it became urgent to perform surgery to prevent infection.

The idea that she was outside of me felt quite surreal at this point lying there being sitched up. After a few minutes one of the neonatologists came out and explained that the sac had burst and they were going to have to perform surgery that night. DH was taken in to see her briefly at this point and when he came back I asked how she looked and with tears in his eyes, he said 'Perfect'. We were taken to recovery where I stayed for 20 minutes, we talked to the nurse and DH told her about how he'd put in the gas pipes in the hospital. The ob came in and told me from the caesar point of view things had gone well and as expected. The time passed quite quickly and they wheeled me into the intensive care nursery to see her for the first time. She was lying in an open cot with some sensors on her and ventilator and drip in her hand. She looked very pink which I commented on to Helen and she said that was something to do with the BWS. By this stage, the bowel outside her body had been wrapped in a plastic covering so didn't look too scarey. But she was definitely beautiful and appeared to be here safely at this point.

There quite a few people around between the nurses, neonatologists, and surgeons at this point. And we left to go upstairs to the ward. I think because it was all quite surreal and maybe due to the caeser drugs and because it all happened so quickly but the night passed quickly. The surgeon came to see us about 1am and explained the risks and DH signed the consent. The anetheist rang about 2am and DH answered some questions and gave consent over the phone. I dosed off and on and then we got a phone call at 4am - my heart jumped but DH got on the phone and the surgeon said the surgery had gone well. And when DH asked if more bowel surgery would be required, he said he was hopeful that it wouldn't be. So it appeared we were over the first hurdle. At 5am we got another phone call saying she was back in the nursery and stable. At some stage, the midwife had hand-expressed some cholostrum from me and got about 2ml which apparently was good.

The morning passed quite quickly - the midwife had come in about 8am saying the priority was to get me out of bed and down to the nursery to visit. So we had some breakfast. About 11am I was getting impatient and buzzed the midwife who said she was finishing some paperwork and then would be in. With her help we hand-expressed again and had lunch. By about 12.30 I was in the wheel chair and we were on our way to the nursery. We got in there and our beautiful girl was in the open cot on a ventilator with a lot of tubes in her. But she looked comfortable and was moving around. We spoke to Helen and she explained that the night had been much more dramatic that they had been expecting. Her blood sugars went extremely low after delivery and also her blood pressure. The hypoglemcia was expected as part of the BWS but it was much more severe than expected and the blood pressure issue wasn't expected. And on top of this she'd had surgery. But she was stable at this point and Helen said doing about as well and could be expected given everything that had happened the first night. This combined with how she looked meant we were excited and glad at how well she seemed. In hindsight I think things may have been more serious than we realised at this point. She was on morphine, TPN (IV food), glucogon (for the blood sugar), glucose, dompamine (for the blood pressure) and I think also getting hydraquarterzone at this stage. But because we'd been expecting most of this, it didn't come as a shock to us and we were just excited about our little girl being there. I think I was also relieved at this stage because although we'd been having heaps of scans, they couldn't ever tell for sure if the bowel in the omphalocele was still viable but now she was out it looks like the it was OK. We got some photos and talked to her. Steph (the nurse) showed us how to touch her but we were both a bit scared too because there was so many tubes in her.

DH's parents arrived about 2 and DH took them both in to see her one at time (max of 2 visitors at a time in the nursery) - they were over the moon to meet her. My Mum arrived straight from the airport about 5 and I took her down to meet her first grand-daughter. They were saying she was puffy at this stage and not really passing enough urine. I didn't really realise this was a problem and just thought it would improve over the next couple of days. Mum went back to our place and DH stayed the night with me. We expressed more cholostrum in the middle of the night and rang the nusery to check she was doing OK and she was still stable.

Sunday was our best day - she was stable and starting to pass more urine. We'd express and then go down to see her. DH even went back to our place for a couple of hours while Mum stayed in the room with me. We'd started thinking a few days down the road to when I'd be going home and we'd be coming into visit her in the nursery - even with everything going well she was still going to be in hospital for a few weeks. As Mum said in her letter about Matilda at the funeral - 'On Sunday she looked so good, we thought she'd be with us forever.' She was still on all the same medications but things seemed to be under control. The puffiness was going down a bit. Because DH and I saw her so often we didn't really notice the physical changes in her at much as our Mum's who were seeing her less often. DH's Mum commented to my Mum that her features were much more defined on Sunday.

On Sunday night, we had seen her about 7 and then after we'd expressed a couple of times, we went back down at 11pm. On glancing at her it was obvious things had changed, there was a drug trolly and extra people around her. My heart dropped and we headed over and noticed she was on a different ventilator - the CPAP one which made her shake as it worked. Steph and the doctor explained things to us:
* Her lungs had started bleeding - they didn't know why but it appeared to be slowing. This freaked me out.
* Her hypoglemia has reoccured - dropped to 1.6 which is not as low as the first night. They were trying a different drug called oxyitride at this point. They'd had to get the oncall endrochronologists involved because they don't normally have to go beyond glyogen and glucose to raise blood sugar levels.
* Her oxygen saturation levels had dropped so they'd had to change her to the new ventilator to give her more support.

We hung around for a bit and then went back to our room. Once outside the nursery I really burst into tears and although I couldn't bring myself to say it out loud, for the first time thought to myself 'what if she doesn't make it'. But in the room I was still crying and couldn't really think about sleeping but then Steph rung and said her next blood gas had shown her blood sugar levels were back up and the bleeding was still slowing. This made us feel much better - things appeared to be stable again and we went to bed feeling that things would be OK in the long run. But I did realise at this point that things were going to be more up and down that I had thought. I knew rationally that they'd be setbacks in the intensive care but when it happened the reality was much worse. We expressed in the middle of the night and rang the nursery and things seemed to be stabalised - we started to feel more positive about things again this point. In the morning we visited the nursery and Lucy talked to us about things, she explained that they'd been talking to the endochronogists and Matilda would only be able to stay on the oxyitride for a couple of days due to the side effects and to fix the blood sugar levels would need surgery to remove part of her pancreus. If her gut was working they would be able to feed her and switch to an oral medication for her blood sugar and put the surgery off for a week or two. Obviously this was our best option. Otherwise, she was going to need gut and pancreus surgery in the next couple of days. I remember looking at her and thinking 'she's not healthy enough to have surgery at the moment'. There were a couple of options to see if her gut was working - x-ray or a dye. The dye was complicated by the fact she was on a ventilator so they couldn't move her. So things weren't great at this stage but we were still hopeful her gut would be working (the surgeon was reasonable confident that first night) and we would get through this. They were getting the occasional clot from her lungs but the it all appeared to be old blood.

We went back upstairs and I rang our Mums to explain things had gone backwards during the night and she wasn't as healthy as the previous day. She was requiring much more support at this stage and wasn't really moving around much. They came in and we took them down to see her one at a time. So the day passed and things appeared to be stable again. At 1pm DH took some of my milk down and reappeared very excited about 10 minutes later - they were feeding her. They'd spoken to the surgeon and he was confident enough that there was no blockage in the bowel and we should try her on milk. This was great news and though we'd gone upstairs to try and get some rest, we were both so excited about this news we couldn't. When we went down next, I got to feed her (hold the syringe up) which was great. We were back to being very hopeful that this would all work out at this stage.

At 11pm things were still good and we told her to behave herself for the rest of the night and not cause any late night dramatics - this seemed to be when things went wrong. At 1am, we went down and she'd had another plummet. Her blood pressure had dropped again and the bleeding restarted - they were changing her over to a new blood pressure drug. And the last feed hadn't emptied from her stomach so she was off feeds at this point - Steph said they'd reassess in the morning. So things were scary again. We went back upstairs to get some sleep and were back down in the nursery about 5.30am and there were a crowd of people around her - it was obvious at this point things were bad.

Her blood pressure was still very low and wasn't responding to the medication, her oxygen saturation levels were dropping, and her lung was bleeding again and it looked like the other one had collapsed. We sat with her until 7 and then went upstairs and forced some breakfast down and expressed again and then went back down. Tuesday is all a bit of a blur and things seemed to be happening very quickly. After breakfast Lucy was there and a bunch of other doctors standing at the edge of the room looking over at Matilda and not talking much. Steph - the nurse who had been looking after Matilda was still there at 7.30 which I remember thinking was strange because her shift finished at 7. Before she left about 8 she came over and hugged us and told us she'd be praying for Matilda and would call that night to see how she was doing - this was another point at which I realised things were bad. They were all standing not talking and at some point Lucy came over to us and explained that Matilda was much sicker than the day before and they really needed to get her back to that point. She explained a doctor was coming to do a scan of her heart (the 2nd or 3rd one she'd had since being born) to see if they could see anything to explain the dropping blood pressure. We watched the scan and the doctor said her heart action was vigourous and he couldn't see anything wrong with her heart that could be fixed by surgery. After this DH rang our parents and told them things were bad - luckily they were almost at the hospital at this point. DH left to talk to his Mum and my Mum came in. Mum's a nurse so at this point she could see that the colour of Matilda had changed dramatically and things were very bad. We cried and talked to Matilda - there were doctors and nurses everywhere all morning.

About 9.45, I went upstairs with Mum to express and DH and his Mum came in. In hindsight it seems strange I was still expressing at this point but I guess must have still held some hope that she would pull through this at this point. As soon as I'd finished we went back down. Mum had called Dad and my sister at this point and told them to book flights over. I went back in with Mick at this point. I asked Solly (the nurse) how she was doing and she just said her bp was still very low and said she didn't really know what to say to us because she was so sick but we needed to talk to her. At this point it was really starting to set in that if things didn't change dramatically soon, she wasn't going to make it. They'd lost the lines in her hand at this point I think.

Lucy came over around this time and explained to us that she was very sick and that they were going to try a drug to close the valve that normally closes in the heart when babies are born but doesn't always for premmies. She explained that a possible side effect was that it could make the bleeding in her lungs worse but at this point, there was really nothing to lose in trying. And they were also going to do a blood culture to check for infection and start her on antibiotics. I asked what happened if this didn't work and Lucy replied 'your little girl may not make it'. This was the first time we'd heard someone say this out loud. I asked how long it would be until we'd know if this things would work and she said over the next hour or so. She then said that it's important for some parents of desparately ill babies like Matilda to get them baptised. DH is Catholic so we told them we did want a baptism and another nurse started organising this. DH wanted to know if they'd let his Mum back in for the baptism and was going to ask them but by this stage, I'd realised they were going to let them in. They'd put up a screen next to us to give us some privacy. DH went to the bathroom at some point and I sat talking to Matilda by myself and told her how much we loved her and how much we'd enjoyed having her in our lives even if she wasn't going to make it. DH and I sat there talking to Matilda for a while. DH also rang his Dad and sister at this point and told them they needed to come in. I can't remember when but at some stage I remember looking at Matilda and thinking I should be urging her to fight but thinking that if it was all too late then I didn't want her fighting and hanging on and suffering. Our Mum's came back in and we had the baptism. I wasn't really paying attention and was just crying, and touching Matilda. I do remember when they were saying the lords prayer which I don't know noticing that my Mum knows it which surprised me. It was about midday by this point I think.

After the baptism Lucy did another blood gas and it was just me and Mick there when she came over to us and told us it was really bad and it's now inevitiable that she was going to die and what she really needed now was something that she had never had - a cuddle from her Mum. They asked if we wanted to hold her on the ventilator or off so I asked how long they thought she'd last off the ventilator and Lucy said she thought it would be very quick because her oxygen saturation was so low (they couldn't even pick it up to get a reading) so we decided to hold her on the ventilator first. We got our family back in to say goodbye - it was the first time our brother in law had been in and he was distraught. They put her in my arms and each of our family kissed or touched her and said goodbye. DH sat with me on recliner and we spoke to her and one of the nurses took some photos. After a few minutes, we changed places and Mick held her for a few minutes. We didn't want to prolong things for her at this point so we said that we wanted the ventilator taken out. I asked if I could hold her while they took everything out and the nurses looked at each other and then said that would be fine. I'm so glad I did because the time between them taking the ventilator out and Matilda passing away was very short and we've got a couple of beautiful photos of us holding her and she looks very peaceful. Before they took the ventilator out, they warned us that the blood from her lungs would probably start coming out her mouth. So they removed the ventilator and there was maybe a couple of minutes before blood starting coming up. This sounds really odd but we've got a couple of photos of Mick and I wiping it away which are actually comforting to us because they show us being parents to Matilda which is something we had very little chance to be. Then the blood stopped and after a couple of minutes a nurse placed her in the cot and Helen confirmed there was no heartbeat. DH and I were actually quite calm at this stage and the rush of the morning was over and all the doctors etc had gone.

I have a vivid memory of the following but I can't remember what stage it happened at - it was sometime towards the end but I can't remember if what before or after we held her. DH and I were with Matilda and Lucy and Helen sat down and Helen said they were very sorry that they weren't able to save Matilda. I said 'that's OK - we know you did everything you could' (which we really believe) and Lucy replied 'No it's not OK'. Helen said we may never know exactly where things started going wrong with Matilda but she thinks maybe because her blood sugar went so extremely low the first night maybe it caused some organ damage she couldn't recover from.