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)

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.