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.

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.

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'.

Improvements?

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.

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.

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.

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.

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.

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.

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.

From a Beautiful Friend

A friend on the other side of the world (definitely no snow here) did these beautiful photos for me.

Thank you Cath. I can't tell you how much this means to me.