None of us wanted to pick her up. It was too sad, too gruesome, too much. She was our little girl, but what we were getting back from the hospital would not look like that - the "remains" of a person who never was.
I had to fill out the forms. I knew she would need to be collected after the doctors had completed some tests, but I didn't know who would do it. I couldn't deal with that yet. We knew we wanted her cremated, but we had no idea how you even started to arrange that for an unborn baby. When I came home after the night of the procedure to remove our baby, I googled "fetus cremation". Nobody should ever have to look that up, or see the results. I shut down the computer and went to bed.
The next day I spoke to my father and asked him for help. He mentioned the funeral service up the road from their place, that the lady who ran it was lovely and that he would ask her if she could help. Her name was Martha-Louise, she was indeed lovely, and after listening to me stammer out a brief and I'm sure confusing explanation, she told me she would take care of it, that I didn't need to worry. Of course I did worry, but she kept her promise. She took care of everything, including us.
Nick rang me and told me the baby was "ready to be collected". Forms had been filled in, remains collected & taken to the Crematorium - I wasn't across any of that, but suddenly I was the one who needed to get her. I rang Mum and asked her to come along, I couldn't face doing it alone. And I think I had really only just started driving again, so I probably wasn't the best person to go alone and Nick couldn't get across town from work in time.
It had probably been about a month by then, maybe 6 weeks. That must be right because we had the remembrance service 6 weeks after, following a catch up with the hospital about the baby's pathology, which we couldn't have while they still held onto her. But back then time was something that stood still for me. Surviving another day was a massive challenge, so my concept of time passing is skewed. In fact, I look back on the year 2016 and don't remember much - a blur from finding out we were pregnant mid January to actually celebrating the end of that god-awful year.
Mum and I arrived at Martha Louise's Funeral Cottage - that's seriously what it's called and it is the perfect description - a lovely little cottage tucked away opposite the Auckland Domain, where Martha-Louise and her dog Stella look after dead loved ones. She was amazing, came straight out & gave me a big hug. I'd made her a batch of cookies, which was becoming therapy for me after so long of being closeted away from my kitchen. She told me off, because of course, she'd then have to eat them. She hugged Mum too and invited us in to her front sitting room. She looked at me in an open interested manner and asked me to tell her everything that had happened. I guess I had thought we'd make polite conversation, collect her in a small cardboard box and go. But instead, we stayed for a couple of hours, re-telling my horrific journey, while she asked questions and told us how awful that must have been.
Then she asked if I was ready to see the baby. She had a carrier bag with pink tissue and inside was a ceramic heart box she'd bought from Trade Aid. When you opened the heart inside was the tiniest parcel of pink tissue containing the tiniest amount of ashes. She had warned me there was only a teaspoon full. And of course, I'd worked out that a tiny human, not even half-way incubated wouldn't leave much of a footprint. So a tiny little pink parcel inside a heart, and that was our baby girl, ready to be remembered in a service that weekend.
We didn't spend a lot of time talking about how we wanted to remember our little girl, but it all seemed to come together very naturally. We wanted to have it at our home, near the bush, near nature, near us. We wanted our immediate families. We wanted Sam to be there, and his cousins. We wanted something for the kids to do to remember her (we decided on multi-coloured helium balloons to be released into the sky). We wanted a few special songs to remember her. One of us would say a quick rememberance. We didn't want readings. We didn't want prayers. We didn't want a "funeral".
The day came, and it was all exactly what it needed to be. It was a little overcast, but it didn't rain. We stood in our back yard (which isn't really a yard, it's more a deck that backs onto trees and I said my piece, we played a song (Somewhere Over the Rainbow by Israel Kamakawiwo'ole). We planted a special remembrance plant for her. There were tears. Then we walked to the reserve down the road and released the balloons into the sky, watching them until they disappeared from view. Annamarie's grandmother came, battling her ill health to be there. She would be dead within a few months.
Here is what I said that day - normally if I have to speak I'll do it off-the-cuff, but this one I needed to write down:
Thank you all for coming today. It means so much to have you all here, all the people who have been with us through this journey. You have all been so unbelievably generous with your time, support and love. We are so grateful.
We are here to say goodbye to TJ, our little girl, Sam's little sister. She was a baby who was so wanted. Not just by us, but by everyone here. It was amazing to see the joy on all of your faces when we announced we were pregnant again. Well, joy mixed with sympathy for poor Annamarie who was already suffering physically.
We all had so many hopes and dreams for our little troublemaker - who she might be, what she could become, and what she woudl mean to this family. To have her taken away after all we've been through, especially Annamarie, is cruel and unfair.
But life isn't always fair, as this family knows all too well.. As much as we wanted her, baby TJ just wasn't meant to be.
Annamarie's mum says this is part of our story now. I think that's true. This is a chapter in our lives, and while it hurts, this heartbreak isn't everything. It won't define us. Our family will move forward and create new memories together, but TJ will always be with us, and she will always be a part of our story.
Goodbye little girl, we will remember you.
Because Sam and Nick sang The Rainbow Connection to my belly and we used Somewhere Over the Rainbow in the remembrance service, every time I see a rainbow I think of her, I think she's sending me a sign. I always point it out to Sam - "Look, Baby T.J sent us a rainbow!".
As for my recollection of the service - it's limited. Just the day before I had passed out (terrible cramping) and knocked my head open resulting in a black eye, a headache and another day in hospital. We had considered rescheduling the service because my unexpected hospital dash had put a spanner in the works. But in the state my body was already in, recovering from months of trauma, still carrying the remains of cancerous tissue, still nauseous... what was a little knock on the head?
All I remember is the family standing around in kind of semi-circle on our wet deck with Sam in the middle dancing around in excitement that all his favourite people were here at his house! And when Nick did his thing and tears spilled over my eyes and I looked to Sam for a hug and was denied it because he was too excited, I remember how my lovely special nephew came over to me and put his arms up. He gave me a cuddle, a sweet cuddle while he sucked his thumb as Nick spoke. At the end he looked at me and earnestly asked if it was O.K for him get down now. Bless him.
I think of my gel nails, which I had done earlier that week at Leah Light. I wanted to do something special and when you're too wrecked to do it yourself, being able to see someone else with the same standards as you is really important. It also helped that the woman looking after me was compassionate and let me tell my story. It was the first time all year I had done something beauty-related, a long stint for a beautician! I have a feeling it will become an annual tradition for me to honour her memory.
And I also think of the special remembrance plant - a pink camellia bush that my Mum and Grandma chose together. It is surrounded with rocks that I hand painted and I can see it when I look out the kitchen window. Sam and I often water T.J's special plant together. It is a comfort to have it there.
Finding the right way to remember a loved one is a personal journey, and it can be a hard one. And it's different when the person being remembered never had the chance to become a "real" person. Nobody ever met them, touched them, held them in their arms. There are no memories to cherish, no stories to share. We know people who have chosen to have a full-blown funeral for their lost one. I think that's great. I know of other people who've not wanted to do anything public, remembering them in their own way. I think that's great too. In my humble opinion, it doesn't matter what you do, as long as it's meaningful and special to you. Just don't be influenced by others opinions of what's "appropriate" and what's not. Appropriate is a dirty word when it comes to grief. "Appropriate" is measuring your loss to someone else's standard of decorum, and why should that matter?
We still have our daughters ashes. We think we know where we want to scatter them, but the time hasn't felt right yet. We're in no hurry, and we may not even go through with it. It feels like the final stage or letting go, and maybe that's not something we're quite ready for yet. It's not that I think of the ashes as "her". I look at them on the shelf, and for me it is a symbol of what she was, and what she could be - but I feel like her "essence", whatever that is, is somewhere else.
I can't remember where it came from (maybe it was the balloons) but we've always told Sam that his sister is "up in the sky", and those are the words he uses: "I'm thinking about baby TJ up in the sky Dad". I guess that has rubbed off on me, because that's how I think of her now. She came into our lives, made her mark, and then she floated away to join the rest of the stars.
So, my point, which I'm getting to in a rambling roundabout way, and I feel like I've made in a few other posts, is just to do what you feel like. Don't worry about exactly what it is or whether it's perfect. It will be what it needs to be. It will all be part of your story, and you will always remember.
We appreciate everyone who is following our journey, if this is the first time you've visited and want to read from the start you can read first post here.
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Putting a name on things is tricky.
I remember when we named our cat. She had come to us through such a random set of circumstances. At the time we were living at Annamarie's parents house, along with her brother, an electrician. He was working out at a quarry somewhere over the other side of town, and one day at work he discovered a little black kitten hiding out under his van. The next door neighbours had a little black kitten, so he "naturally assumed" it had stowed away and come across town with him. He and his workmates coaxed it into the vehicle, and he brought the cat home - at which point the neighbours' kitten ran out onto the driveway . . .
Having successfully executed the theft of Quarry Cat, my brother-in-law did the next natural thing for a guy in his early twenties - he ignored the problem. It wasn't until several days later, when Annamarie spotted it hiding in the long grass out front, that we realised it existed. She squeezed the story out of her brother, and we temped the cat inside with a can of tuna. She had no identifying tags, and she didn't seem to want to leave, so we kept her.
After a couple of days, we figured we should probably call her something. We tossed around a few suggestions but our favourite was Malarkey. Don't ask me why, don't ask me what it meant - but I really liked it. Which didn't matter, because of course I'm not in charge. Annamarie's Mum thought Malarkey was a "dumb name for a cat" and "what does that mean anyway"? She took to calling it "Larkey" in protest, and over time that slowly morphed into "Lucky". I held the line on Malarkey for a while, but eventually I had to admit defeat.
The odd thing is that now when we're asked about the cat's name, Annamarie tells this story about how she was "lucky to find us" and everyone marvels at our ironic wit, calling a black cat "Lucky". Of course I don't correct her, because this is a much smoother cocktail story than getting overruled by your Mother-in-Law (note - I actually get on really well with my mother-in-law, in spite of this incident, and I assume she likes me, or at least she hasn't kicked me out of the family yet).
So, my point is, naming things is a strange business. Once you put a label on something, it changes the thing, both in your mind and in the minds of everyone else around you. So when we lost our baby at 16 weeks, we weren't sure if giving her a name was the right thing to do. What's more, when we lost her, we didn't know she was a "her", and we had no guarantee that the post-mortem tests would give us a conclusive answer on that front. In the end, we did find out she was a she - but more on that another time.
We had pretty much decided on what we would name a baby girl if we were ever to have one. But should we use that? What if we had another child in future (although that was not on our radar at all at the time)? Besides, it didn't feel quite right to name a baby we'd never even had the chance to meet.
During our previous pregnancy with Sam, we had referred to him as "L.J." before we decided on a final name. We had done something similar with this pregnancy, referring to the baby as "our little Troublemaker", based on the amount of hassle she was causing for Annamarie and her health. Yes, we know - we are dark humour geniuses. This felt like the most natural name to us, but you can't mourn a "Troublemaker" - and that dark humour would have run its course pretty quick.
At the same time, it didn't feel right to leave our baby without any sort of name. She had existed, she was a part of our story, she'd had a massive impact on our lives. Sam needed something to call her. We needed some way to talk about her.
In the end we landed on " Baby T.J.", for no reason other than it felt right to us. We shared it with Sam, and it's a name he's continued to use to talk about the experience. We shared it with our family, we shared it with the funeral director who helped us with her remembrance service. It felt weird to name her at first, but now it feels completely natural, like another part of the journey, and like a true part of our family.
I was convinced that Troublemaker was a boy. CON-VINCED. And when we lost her, I felt we needed an identity - not an "it" and I needed to stop referring to the baby as "him". It felt, I don't know, more real to give the baby an identity - someone to mourn. But at the same time, I felt like waiting 6 weeks to find out the gender & then reveal a proper name felt a bit ridiculous, overkill. So when Nick suggested continuing to call it Troublemaker, I immediately said yes.
In all honesty, had we known at the time she was a girl her name would have been Ella Patricia. Patricia after Nick's amazing Aunt, a woman who is incredibly special to both of us (and incidentally performed the ceremony to marry us). We knew from before we conceived Sam that a girl would be named such. Ella Fitzgerald and Aunty Pat - a formidable combination in a name. Sam, however, was a much harder kid to name. There wasn't a lot of agreement on his name - much debate until the end, but of course, as is often the case, the person carrying & delivering the baby gets the power of veto. And he really is a true little Sam - Sammy J, Sam the Man. His name is perfect. And likewise, T.J's name is perfect.
Sam likes to tell people, in a matter-of-fact tone, that Mum "grew two babies - me and Baby T.J, but she died, hey Mum?". Sam and T.J. Maybe better than Sam and Ella? (Salmonella!! Ha, maybe things do happen for a reason after all)
We were encouraged by the professionals we met with after our loss to give the baby a name. Not pushed - everyone was very clear that we should do what we felt was right - but I certainly got the impression it was considered the "healthy" thing to do. By this stage we'd already made the decision to give our baby girl a name, so it didn't have too much influence on us - but it's always interesting to see the "experts" opinions shining through, even when they're trying to suppress them.
Because I'm a big fat nerd, I've tried to do a bit of reading on the topic, whether there are benefits one way or the other to naming a lost one. If this is a choice you're struggling with, I've got news - there is no news. There's a lot of interesting stuff out there about how various cultures choose names for their babies. This article offers a first person perspective from a number of interesting places - Argentina, India, Poland - but I couldn't find any formal studies or anything to indicate whether putting a name on your grief made things easier or harder. Which I suppose is to be expected - as with all grief, there are no ready made answers.
I think in the end this just one of those choices that's very personal, and wrapped up in a whole lot of other stuff that's part of your own journey. For us, having been through such a massive ordeal with Annamarie's health, it didn't feel right that this thing, this little troublemaker, wouldn't be called something. For others, that might be different. It doesn't diminish your grief or make you love them less just because you don't want to give them a name. I have a friend who waited 3 months to name one of her (living) kids - it was so long that they got a letter from the government giving them a hurry up. Do you think she loved that child any less in those 3 months? I very much doubt it.
Just do what feels right. It's a cliche, but the more I learn about life, the more I find that cliches exist for a reason. They've only hung around so long because there's a kernel of truth in there somewhere. So do what feels right, and (I think this is the hard bit) don't let others' opinions or "you should"s make you feel any less justified in doing so. The grief, the love, the heartache belongs to you. Call it what you want.
Many who suffer pregnancy loss don't have the "problem" of explaining it to another child, because maybe they weren't able to have one in the first place. Dealing with our son's grief has been a challenge, but it has also been a privilege. Here's how we went.
I didn't get to see a lot of Sam during my second pregnancy, read more here. But when I did see him, it was usually at bed time. He was very aware there was a baby in Mama's tummy and he would talk to it, sing to it, kiss my belly. He and Nick sang "Why are there so many songs about rainbows" (The Rainbow Connection), and that song was played at her remembrance service.
We knew Sam was excited to have a baby brother or sister. His cousins all had babies come into their families. His friends had siblings. He wanted one too.
We didn't tell him straight away that the baby had died. The first night I was in hospital, he knew I was sick. I'd been sick and in hospital a lot over the last few months, so he was unconcerned. He had just been to see his first movie and he was staying with his grandparents, he was happy and occupied. Then when I went home on Saturday afternoon it was meant to be until I would go in for surgery on Monday morning (when he would be at preschool) so he came home to be with us. We didn't tell him what was going on, there wasn't the time or opportunity.
Then when I went into hospital again in the small hours of Sunday morning, he was still asleep. That day when I was in hospital having his little sister removed from my body he was preoccupied with the novelty of having my Dad wait on him hand and foot (my Dad having rushed to our rescue in the wee hours of the morning to come & be on hand when Sam woke so we could go straight to hospital). Later he went to the other grandparents, and was doted on again. When they brought him to see me in hospital about 5pm on Sunday night, he'd had a full weekend of adventure. He was amazingly well behaved, he didn't run around or make too much noise. I got cuddles, smiles, offers of snacks. He was the best thing. Exactly what I needed at that moment. But again, it wasn't the right time, So we waited.
The next night, at home, lying in bed next to me, having cuddles with his Dad, we told him. We told him the baby wasn't in Mum's tummy anymore. He asked if could he meet the baby. "No, Sam, the baby got sick in Mum's tummy and it died and it won't be coming back."
We thought he'd be a bit sad, but he'd just roll with it, get over it quickly. Boy, were we wrong. We're obviously doing something right in raising an emotionally adjusted child because He. Just. Lost. It. He cried and cried, genuine sobs - "But I wanted a baby", "I don't want the baby to die", "I want the baby to come back". And with tears running down our faces we placated as best we could. "We wanted the baby too", "We didn't want the baby to die either", "We want the baby to come back too, it just can't, the baby has died and can't come back".
While Nick held a sobbing Sam, I asked him if he wanted to know the baby's name, and through the tears, he nodded. "The Baby is called T.J. Baby T.J. And we're going to have a special celebration for the baby. Would you like to help me?". He nodded. "You could help me with the special garden, I'm going to paint some special rocks so we can always remember Baby T.J. We're also going to have a special celebration, with lots of balloons that we can let go into the sky, would you like that?". We would hear this rabbitted back to us many times over the coming weeks. "We had a baby called Baby T.J but the baby died and we're going to have a special celebration with balloons in the sky".
I let Sam help me choose the paint for the rocks for the garden. He helped (a little) with the painting, and admired them while they were drying. He knew all the colours of the rainbow, and there would be a balloon of every colour to release in the sky - ROYGBIV, or as his other favourite rainbow song goes: "Red and yellow and pink and green, purple and orange and blue. I can sing a rainbow, sing a rainbow, sing a rainbow too".
We didn't really plan how we were going to tell Sam. We knew we would tell him, and we knew it would have to be soon, but we didn't sit down and script what we were going to say, the language we'd use. I suppose that would have been a smart thing to do - but I also think that speaking directly from the heart was a good approach.
One thing we did agree on was that we would use the word "death". That might seem pretty heavy for a 3-year-old to handle, but we thought it was important that he understood the finality of the situation. "Gone away", or "passed away" would have been misleading, and potentially confusing for him. From reading and speaking to others since, we've learned this is the current "recommended" approach, so hey - go us.
I hadn't expected him to lose it the way he did. I'm not sure if it was genuine grief, or whether it was that preschooler "I-lost-something-I-wanted" indignant rage, or whether it was because he could sense how stricken both of us were. I guess it was probably a combination of all of the above. Either way, it was pretty gut-wrenching.
He talks about it quite openly now, like us he'll have difficult days, and sometimes he'll fess up that he's "sad about baby T.J", though sometimes I'm pretty sure he's using it as a ready excuse for bad behaviour, because he sees how it hits home with Mum and Dad. But that's pretty rare, if I'm honest.
The harder thing is the questions. He's a pre-schooler, so of course he's obsessed with asking "why" about everything - and the loss of his future sister is no exception. "But why did Baby T.J die? Why was she sick? Why couldn't she get better?". We try to answer these as honestly as we can - "she was very unlucky and got sick in a way that couldn't be fixed. We're sad too, we wish it was different - but sometimes sad things happen, and all we can do is choose how we deal with it".
Harder still is trying to manage the way he perceives sickness and death now. He's seen the inside of so many hospitals, hospices and other sad places in such a short life. When a friend or family member gets sick or goes to the hospital, he'll often ask if they're going to die. He asks us if we're going to die. As a parent, what do you say to that? I'm OK with little white lies but there is a big difference between "no you can't have any ice cream because there's none left" (there is a lot left and I will be eating it later) and "I am immortal".
Again, we've tried to be honest - "yes, we will all die one day, but hopefully not for a long long time. And that makes the time we do have together more special, right?". It feels like the right approach to us, but I do worry sometimes that he's too preoccupied with death and sickness, and I wonder what scars that will leave.
There have been many tears and sad moments since then and Sam still mentions her almost every day. He knows that Baby T.J is in the sky, looking down on us and the balloons we released went up to her, to share them with her. He often tells me he's "sad about Baby T.J" and needs a cuddle.
When he lost his balloon at a Christmas party last year and then proceeded to lose it I calmly sat him on my lap and thanked him for sending the balloon up to Baby T.J. Instead of a devastating memory, he was then happy to tell people about losing his balloon and sending it up to his sister in the sky.
Being not from a religious background myself, and Nick having "parted ways" with his faith in his youth, we haven't brought Sam up to understand about God and heaven. I suppose that people who grow up in some sort of faith that involves an afterlife have a specific way of explaining death to a preschooler, but we didn't have one. What we learnt is that no matter what your belief, the key message to get across is that death is final, there's no coming back from it. That it's ok to be sad, it's ok to be mad. And in my opinion, it's important for them to have a place to remember that person. In our house we have T.J's special plant and rock garden that Sam diligently waters. He also believes that when you die the part that makes you who you are goes up into the sky to be with past loved ones and is always looking down on us. I think this image is really appropriate for his age level, and has definitely been a comfort.
So this is all fine in our little family unit, and I'm really proud of the way Sam is working through his grief, how he can talk about it and wrap some context around what's happened. I think that's really important for him to fit it into his little memory story of his life.
Outside of our family though, it can get a little awkward. If asked by anyone whether he has a brother or sister, he'll quite happily and confidently announce that yes, he did, but that she got sick and died and she lives in the sky now. The response to this is normally a sideways look at Annamarie and me, and/or a slow "O. . . K then . . .".
I'm torn on how to deal with this. On the one hand, I think he should be able to talk openly about this stuff - and I don't think enough people do speak up. One thing we've learned on this journey, and one of the reasons we started this blog, was that grief and loss affects more people than you might be aware of, and we all hold it pretty close to our chest. Maybe if we were all a bit more honest with each other about our pain, it would be a better world.
Then again, I don't always want to discuss the loss of my baby with the cashier at the supermarket.
We're like all parents, figuring it out as we're going along, doing what feels right to us, as thoughtfully and lovingly as we can. We're not experts, but we think we're doing OK. I guess if we were to offer any advice to others in our situation, it would be that it's best to be upfront with a child about death. Discuss it, talk about what it means, and what we as a family will do next. It will be hard for you, you will have to confront uncomfortable questions in that blunt and genuinely curious way only a child can ask them. It will hurt. But in our experience, when you can stand back and be proud of your child, when sometimes they're teaching you how to cope, giving you comfort, it is worth every moment.
This is the part two of the story of us losing our baby. If you haven't read the first part, it might be worth going back here. Don't let us tell you what to do though. Take charge of your destiny, kemo sabe.
As you'll see, we're telling this story in turns, the way we experienced it. We both felt plenty of pain through this process, but Annamarie's was physical as well as emotional, so she gets to go first.
Telling people was hard. The first person we told was Nick's Mum. She just lived across the road the from the hospital & obviously knew we were at this appointment. So we're sitting in the car in the first level of the carpark, which in itself was pretty amazing, because after spending a lot of my time at Auckland Hospital last year for myself as well as looking after my Grandmother, I know how rare it is to get a decent park. Anyway, clearly I'm procrastinating from a painful topic here. The point is, we're sitting there, it's about 9.45am - yes, just 45 minutes to change the fabric of our entire lives - and we were just numb. Nick asks what we should do. Of course, I answer that we should tell people and we should start with his Mum as she's so close by.
She wasn't expecting us, we hadn't said we'd drop by, but she must have seen us parking across the road. I don't know how, it's not like she spends her days looking at the road, but before we could open the gate, she was there. Nick was in front of me, I couldn't say anything, I didn't have the words, I just shook my head. Nick said something, I'm not sure what, and her face crumbled and she just clasped him in this big hug. I'm standing behind him on the stairs, nowhere to go, no one hugging me, feeling a wee bit awkward. It's worth mentioning too, that I haven't eaten, which is way worse for nausea & I feel l like I could vom or pass-out any minute. I mean, she did eventually hug me too, that's not the point, the point is that we had to tell her this awful news and of course she didn't know what to do either. She rings his Dad, who is miraculously in town (he travels a lot for work) and at work 5 minutes down the road and she's sobbing telling him he needs to come home.
All I want is my Mum. Funny that, how even at 34, an adult, a mother, a wife, someone who has has managed big teams of people and is generally considered quite competent, needed her mother more than anything. But of course as was my luck for the past 3 weeks Mum had been on a cruise around the Pacific Islands with my Grandmother. She was un-contactable via phone and the internet was patchy at sea (and expensive!). Mum had booked this trip a year ago, and it was something my Grandmother wanted to do. She was turning 90, so it wasn't something she could deny her. And in hindsight, seeing as she'd be dead within a couple of months of returning from the trip, it was an invaluable experience for Mum, though more on that later.
Poor Mum had known she was leaving a 13-week pregnant, extremely sick daughter and she was worried about me. She'd been a huge help to us with childcare while I was bed-ridden, meaning we'd needed to hire a nanny while she was gone, not to mention the massive emotional support she'd provided. Just before she left I was admitted to North Shore Hospital for the hyperthyroidism, so she knew how bad I was. Then a week into her trip my then 3-year old nephew, her grandson, who incidentally was born at 29 weeks (and whose twin sister died at birth) was admitted to Starship Children's Hospital with severe respiratory problems. His asthma was out of control & he'd developed pneumonia. Throw in a collapsed lung & you've got one scary situation. Mum had been keeping up with our news via email, Skype and expensive cellphone calls when she hit land, but it was hard. When we were referred to Maternal Fetal Medicine a week and a bit earlier my Dad counselled me not to tell her that there was a small chance something was wrong. Didn't want her to worry unnecessarily. But see, she already knew I had the Obstetrician appointment, it was booked before she left (when I was referred at 12 weeks), so she was going to Skype to hear about it anyway. And besides, when you're hellishly sick and running on empty, sometimes the only person you can talk to is your Mum. So of course I told her the OB had referred me to MFM and there was a risk of a serious condition. I don't know if she was really worried at that time, because I felt I had played it down.
So she knew I was having this appointment, she knew what time I'd be done and what time she could be at the iPad for a Skype call. It was going to be about 11am our time. I'm sitting at Nick's parent's apartment, his Mum & Dad are there. Everyone is trying to get their head around it, and his Mum asks me what I need. Of course, all I need is my Mum, and it's a good hour before we can even reach her. I call my Dad. I don't even know if he remembered we had the appointment, I mean, my nephew had just got home from hospital, he had his own busy work schedule and he was actually going away for the weekend that day with his siblings. So when he answers, it's just a "Hi Annamarie", like a normal, I'm-in-the-middle-of-something-but-I'll-take-your-call-anyway type of tone. I don't know what I said, it was a quick call, he got the gist and said he'd be there. I think I asked him to call my sister & brother, maybe I asked Nick, I don't remember. I do remember waiting in the courtyard for what seemed like forever, but was probably about 20 mins, for My Dad's car to appear. It gave me something to do I guess. When he got there the discussion turned to why I was waiting so long to have "this procedure".
We'd been told the procedure might not be until next week, and we would have to go over to our "home hospital" at North Shore. But why, when I'd just come from Auckland Hospital? Surely if this "molar tissue'" was so concerning we shouldn't just wait around? I had mentioned to Anna, the midwife, after we found out our baby had died, that I didn't want to go to North Shore. My last experience there hadn't been great, and also we're from West Auckland, so having to hike over to the Shore is really quite a dumb rule. Anna had said I would have many months of follow-up and that it would need to be through my own District Health Board. There was nothing she could do. We didn't push it. We were still in shock from hearing our baby had died, but I think back at how naive we were. We were in the hospital that had the most experience with this rare disorder. Of course we should advocate to stay there. But this is the problem with hospitals - people are asked to make massive life-altering decisions when they are in no state to even choose a sandwich, let alone decide on what they want out of their health care professional.
Anyway, everyone is focused on their task: my Dad gets on the phone with my Aunt, who is a GP, then with his boss (it's a healthcare organisation). Nick gets on the phone with my GP and with Anna. Surely one of these avenues will deliver the result. In the meantime I'm sitting there numbly, intermittently crying. Nick makes me eat a banana, I don't throw it up. My midwife calls, she'd been notified straight away by the hospital, she doesn't really have anything to add, she's awfully sorry, she's calm & reassuring, but she can't help with my North Shore dilemma. Then Anna calls back. Provided we use a central city address as our place of residence I can have the procedure at Auckland Hospital and we shouldn't really tell anyone (oops, messed up on that promise now...). She's just not sure when. The "good" news is that my hCG level (pregnancy hormone) is so off the chart that my body hasn't recognised the baby has died, so the risk of sending me home & miscarrying at home is incredibly low. Let's take a minute there - my hCG level is so high my body is faked into thinking my baby is still alive. This baby bump I have grown, is really just a dead fetus I'm carrying around who is continuing to make me sick because her placenta is forcing my hCG levels to such astronomic proportions that the nausea & vomiting, breathlessness & fatigue I'm feeling is for nothing. And on top of that the molar tissue has the potential to metastasize into a cancer that will make me sicker. So just going home for the weekend, until the best specialists are available on Monday, no worries, she'll be right.
I sound really jaded and angry. I'm clearly still really pissed about the whole situation... So I got a call on the way home from Nick's parent's, about midday. We're going home, my sister is meeting us there. The call is Anna the midwife, what time had I last eaten? (bloody banana). Come in at 4pm then, she says, they'll be able to do "the procedure" this evening. Ok, we have a plan. Something to work towards.
We go home, we see my sister and her husband, my Dad is there too. We're waiting to talk to Mum. We couldn't reach her at my in-laws. Nick's been sending emails saying to call us as soon as she's online. We're sitting out on our deck. It's overcast, dark in the bush. Finally the little dot next to her name goes green. The reception is terrible. Simple platitudes, how are you, weather, terrible reception etc. Then I get straight to it: "Mum, the baby didn't make it". She can't hear me, bad connection. "Mum, the baby has died". Nope, again. My Grandmother is now in the background. "Mum, the baby has died". She hears me, she goes silent. She's silent because she's choked up. She's trying to repeat it to my Grandmother, I wonder if she has her hearing aid in. We have a short conversation. We have a date for the surgery now, we're going in this afternoon, which of course makes her relieved. She's worried about me miscarrying & haemorrhaging out at home. Anyway, job done, Mum's been told. But I'm totally unsatisfied. I didn't get to talk to her about anything. She's not here to be with me in hospital, to pack my bag. My sister, in her workout gear from her work locker, is staying, coming to hospital with me. Our son is with his nanny. She had asked if she could pick him up from preschool early to take him to The Jungle Book. She actually sent a text just after we found out the baby had passed, so that was a surreal conversation. But anyway, it's his first ever movie, I'm worried he'll be scared. It's his first ever movie and I'm not the one taking him. But he's going to have a great time, and right now, that's all that matters. She can take him to Nick's parents' place later. All we have to do now is worry about me.
And then the hospital - that was just a waste of time. After admitting me to a shared 4-bed room in the Gynecology ward, I'm poked prodded, asked many questions. At the end of the surgical list tonight, I'll be taken in. There's a lot of waiting. I see different doctors. I go through the surgical consult form. I'm ready when they are. In the meantime, I'm nil-by-mouth & chronically nauseous. Anti-nausea medications did nothing the entire pregnancy, why would they work now? Eventually about 8 or 9pm, they tell me they won't be able to do my surgery tonight, too many priority cases. Once I know I can eat, I send Nick out for sushi. For some reason, now that the fear of catching listeria & harming my baby has passed, it's the only thing I want. He just made it to the sushi place before closing, but he was gone a bloody long time. I asked the nurse if Nick could stay. But it's a women's ward, I'm in a shared room, of course he can't. "We'll look after you dear". Well, yeah, but we just found out we lost our baby, it would be nice to stay together. But this is the same nurse who asked if I had another child then proceeded to tell me I was so lucky, that some women lose their first baby, you know. She also told me I was "lucky", I still had my womb, I could try again. This was the start of the incredibly insensitive comments I would hear from well-meaning people who should have just kept their mouths shut.
But alas, after a night of no sleep due to the nausea and sounds of other people's equipment beeeeeeping all night, I was told that because it was Saturday, and mine was "a big baby", the surgery was too risky to perform without the full surgical staff and blood bank team on board. Normally at nearly 17 weeks you'd have to deliver, but of course, the molar tissue meant that I had to have "all the tissue removed". This procedure still haunts me today, but I think the full story has to wait for another day.
I was sent home to come back at 9am on Monday morning because again, my body thought I was still pregnant, so the risk of me going home was low.
So we went home. We went to sleep.
And then, all of a sudden, we were back in hospital. Annamarie had woken me up at around 2am experiencing cramping and pain. She'd actually had to call me from our room (I had been relegated to a pull-out bed in the spare room for the duration of the pregnancy due to the smell of me, regardless of how many showers I took, inducing projectile vomiting from my beloved).
We had been back in Hospital since the early hours of the morning, doing what you do in hospitals - waiting. And then waiting some more. A nurse checks your blood pressure. You're not dying, so you wait, to see another overworked doctor who has probably being dealing with people who actually might be dying for the last 10 hours.
In our case, said overworked professionals showed up bright and early at 8am, and briskly informed my wife that they would proceed immediately with the operation to remove our unborn baby, placenta and other "unwanted" material from my wife's uterus. This horrible procedure is sterilized by acronym down to "D&C" (Dilation and Curettage) . If you really want or need more information, you can go here. It is not nice.
I had made what I thought was the sensible decision to run downstairs and grab a quick coffee before doctors' rounds. This would infuse me with the energy and mental dexterity to ask intelligent questions of the green-robed-demi-gods who would shortly descend upon us. Genius. Annamarie called me while I was receiving my coffee and panini. The doctors had already been. The procedure was happening. Now.
I raced back as quickly as the hospital lifts would allow and found her lying in her bed alone and scared. The crowd had disappeared, but there was an air of action about the room. Space had been cleared around the bed. Curtains were open.
The nurse came back to take some vitals. I asked some stupid, non-relevant questions. Then the mob descended again - kind and efficient nurses and orderlies took my wife through doors marked Patients Only. My parents arrived as she was being wheeled through. She looked scared, and I learned later that she was, freaked out by the speed and the seriousness of the situation.
I don't know what happened in that room. Annamarie has talked about it, so I guess have some idea. I do know it left her with some serious mental and emotional scars, that she's been diagnosed with Post Traumatic Stress Disorder relating to it, and that she has had panic attacks going into subsequent procedures requiring anaesthetic. I know the look she gets in her eyes when a doctor tells her she'll be booked in for any sort of operation. But I don't really know - only she does. I think she'll write about it at some point, but not today.
So again, I was waiting. This had all happened so fast I hadn't had a chance to sort out things with my job. So, I got on the phone. I had to tell work people I wasn't going to be doing work things for the next few days, and why. It helped keep my mind occupied. Everyone was lovely, and I was able to focus on responding appropriately to their kindness instead of holding my knees and rocking in a corner, which was what I really wanted to do.
It was only a few hours, but we had been told it would be an hour, maybe more - so yes, I was worried. Eventually I spotted the nurse who had been with us through the night. She recognised me, and said she would find out where things are at. After another 20-30 nerve-wracking minutes, I received a phone call from the surgeon (a phone call? We're in the same building, lady. Shouldn't they come see me? But maybe she's going into the next "procedure". I don't know.). She advised that the operation had gone well, but that my wife had lost quite a bit of blood and that she would be in recovery for a little while longer.
Eventually we were allowed to see her. She was barely conscious, drifting in and out of that stone-cold stupor that comes with a general anaesthetic. We all stayed with her, ate some sandwiches and talked about nothing in particular.
After she regained full consciousness, she told me that she had cried as the medical team had prepped her. They reassured her that there was nothing to worry about, that the operation was "normal". But that wasn't why she was crying. She couldn't stop. In the end, they had given her a sedative, and then put her under, still crying for what we had lost, for what had happened to us.
I stayed with her that night. They had given us a private room, and I was able to sleep in a leather reclining chair, which was uncomfortable but allowed me to pull up alongside her and hold hands while we fell asleep - although in truth, neither of us slept that well and Annamarie had to be given a sleeping tablet.
In the morning the doctors said we could go home. We packed up our bags, picked up the scatted pieces of ourselves, and went home to begin putting it all back together again.
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We are a family of 3. This blog is the story of how we almost became 4, why we didn’t, and what we are doing to recover from that experience.