We wanted to travel and go to uni first

My husband and I weren’t ready for kids in our twenties, we wanted to go to uni first, travel and establish our careers.  We’ve been together since we’re eighteen so got married at 30 and had our first son at 33.  There were no complications with Dane. I felt like I had to have a caesarean so was booked in at 38 weeks.  When he was born, I had a lot of problems with breast feeding. The latch was fine but I got into that whole cycle of feeding, expressing then topping up and it became one big continuous nightmare.  In the end, I was that traumatised I just put the pump in the corner and said to my husband take it back to the chemist.   When Dane was around 18 months we started trying for our second child.  Jason (my husband) has a four-year age gap with his brother and wanted a smaller gap with our kids.  I can’t remember exactly how long we were trying for but it wasn’t happening.  I’ve always had irregular periods and polycystic ovaries so went and had an appointment with a fertility specialist.  I had a laparoscopy to clean everything up and got pregnant straight after.  At my 10-week appointment my obstetrician asked if I was sure I had my dates right because they couldn’t see a heartbeat.  A second scan confirmed my pregnancy wasn’t viable. I was devastated, I hadn’t experienced anything like that and it’s not really talked about.

Dane was born June 07 and by this stage it was October 2010.  We moved from Melbourne to Ocean Grove and I booked in to see a local fertility specialist.  I had to wait a few months and we were frustrated because we were keener on having a smaller age gap.  In August 2011 on my first cycle of chlomyd and metformin I got pregnant with Ruben.  At 20-weeks they diagnosed him with a cleft lip and palate.  That was a huge shock and it was really hard to tell people but because it’s was facial disfigurement and bilateral it was going to be quite severe so we had to.  I also got gestational diabetes and at 34 weeks was suddenly measuring a significant amount more.  My doctor said the baby might need to come earlier and booked another scan that week.  I went in on the 31st of March 2012 and I’ll never forget what he said during the scan, he said this baby is compromised.  Jason had the day off work and was with me thank god.  The Doctor said he had fluid around his heart and his lungs and needed to get delivered.  We went off in tears and raced back home. It was the last day of kinder so my husband flew in grabbed Dane and flew out no explanation no nothing.  Jason’s parents were in town so they came over and we said we had to go to Melbourne.

Before I knew it, I was in an ambulance with my husband following behind.  In my mind, I just thought we were going to be there for six weeks.  I thought he’s 34-weeks, we’ll be there until 40-weeks and then home.  He was born about nine o-clock that night.  He didn’t cry, I didn’t hear him cry at all.   The anaesthetic wore off and it was a very long and difficult caesarean, nothing like the first one.  I think I was in a bit of shock but I don’t remember telling them that I could feel everything. I briefly got to see Ruben before he was incubated and my husband went straight down with him.   Jason didn’t know where to go, he was up and down like a yo-yo that first night as I was in a lot of pain. It wasn’t until the next day that they wheeled me down to see him.  He was on a lot of support they were trying to drain the fluid and support his heart. I got to touch him when I got wheeled down.  I remember looking at him thinking he looks like me and mum.  I kept falling asleep so said to them to start cutting out some drugs for my pain control.  He was born at eight pound four but he lost two kilos of fluid.  It was everywhere and there were more birth defects evident.  They started to think it could be a genetic problem so a geneticist came and suggested a certain syndrome.   I thought they were right because mum and I had some symptoms, particularly facial features.  It’s a midline condition so impacts things that are in pairs, lungs, kidneys and anything down the middle.   It’s why we had the cleft problem and his lungs were very undeveloped for a baby of that gestation.  I still remember thinking he was going to be ok.  I remember I said to one of the nurses I’ve just got this image of him running along the beach with blonde curly hair.  She just said to me he’s very sick Mel, he’s the sickest baby we’ve had this year.

On day five they called a meeting and said there’s nothing else they could do. They said whether you want to turn off the life support or keep him on either way he will die.  I said I’ve expressed all this colostrum and I haven’t given him any could you defrost some of that. I thought I’d at least send him with some of that goodness to go, he moved his lips but wasn’t really interested.  We went and bought a little outfit in the premmie size.  We didn’t tell Dane Ruben was going to die, he’d bought him some Easter eggs and presents.  Dane said I love my baby which was so hard because he was looking forward to it. When we were trying to work out what to do my husband didn’t want Ruben to die having only lived in a machine.  A nurse said she could disconnect him and hand pump him all the way to the courtyard so we could hold him out there.  At 4 o’clock in the afternoon we made it outside. I don’t remember how long it took but I remember Ruben struggling to breathe.   After, we just sat there for a while.  We were upset and I remember I told Dane pretty quickly, I had to say he’d died and he didn’t believe me.   He ran off to his Grandmother.

We spent that night with him.  The three of us bathed him, dressed him and held him.  Dane went home later that evening with my mum.  Jase and I stayed overnight and most of the next day.  My milk came in the next morning, I woke up with leaking breasts so they got the lactation consultant in.  We had to go through whether we wanted an autopsy, Jason didn’t want him cut open he wanted to have him in tact so we just agreed to an external autopsy. It was nearly the Easter weekend so we couldn’t get Ruben in anywhere and had to leave him at the hospital.  Jason wanted to carry him to the morgue so we did that then had to leave and go home with no baby.  Initially straight after I had social anxiety because you go from being pregnant to not being pregnant.  You’re in the supermarket and you’re in this daze and you want to scream out do you realise my baby just died but then you don’t want people to see you because you’re so anxious that someone’s going to say something. I changed hairdressers, I never went back, it was too much.  I remember my arms physically ached for a week or two with grief, they were physically aching from not having my baby in my arms.  I remember standing up at his grave when I got a phone call from a counsellor at Hope Bereavement.  One of my counsellors had lost a daughter just before she turned one in an accident so she’d been there.  Another counsellor started coming to my house so I didn’t have to expend the energy going anywhere.  At the start, it’s just the rawness, the tears, everything has changed, everything stops.  For a while I didn’t want to connect with anyone unless you were a bereaved parent, after a while I had a lot of anger.  That lasted a good three years and I also withdrew.  People give up on you, I lost the two best friends I had after a year. They started to do things together and I was left out because I was too difficult to deal with I’m sure.  Even my husband said my grief was too much for him.  Dane is what kept me going.  There is a sympathy expiration, I’ve read a lot about it, you get a year max before people start saying to you bad things happen get on with it.

Six weeks later we started genetic testing and found out Mum and I have the condition (Opitz G/BBB syndrome) and so did Ruben. Jase and I decided we really wanted to have another child. I was 38 so we met with a geneticist and started IVF a year later.  The first egg harvest resulted in one pregnancy but I miscarried two days before Christmas, the others didn’t take.  We tried again and did another whole egg harvest, we paid around $30,000 all up $18,000 out of pocket.  The last time I had an embryo put in we drove out of Monash and Jason and I looked at another and said we never wanted to come back.  It didn’t take, so I said to Jason losing these babies is just as painful to me as if we try naturally and I have to terminate. I said why don’t we roll the dice for a couple more months and see how we go and that’s what we agreed to do.  We went and saw my obstetrician, did a cycle of chlomyd and after one round got Eden.

At eleven weeks, I paid for a test to find out the gender and he rang to say she’s a girl.  Everything was going well until a scan at 34 weeks showed there was fluid on her lungs.  I said we’re fucked, that’s what happened with Ruben.  We went to a paediatric cardiologist who tested the heart and said everything looked ok.  At 35-weeks the sonographer said we’re going to have to get the baby out as it had spread to both lungs.  I was in the operating bay waiting to go in at St John of Gods when the paediatrician pulled the plug again and said we had to go to Melbourne.  Before I knew it, I was back in an ambulance with my husband following behind again.   When I arrived, they told me they weren’t going to deliver the baby that night as the A team was coming tomorrow. I didn’t sleep I just kept my hands on my stomach the whole time to make sure she was moving.

The next day we got this amazing woman professor who decided to drain the fluid off her lungs before she was born.  They sedated her in utero with a massive needle, the room was full of all these people.  They put the needle through on an angle and drained 150mls from her lungs.  I had a caesarean straight after which was the most beautiful experience and when Eden was born, she cried and I said to Jason, listen, she’s crying. Dane came up and saw her and then as the days went on, there was progress.  We got to hold her a week later and shortly after the tubes came out from her chest.  She went down each level until there was nowhere else to go but back to Geelong.  I was 41 when I had Eden and I’m 43 now.

Grief is like a wave, you can go alright and then something hits you.   I had family photos taken and I really went down again because it’s not really my family photo.  The wave crashes for a few weeks and then its better and then you come up to Christmas, there’s lots of triggers.  I also got a lot of people asking me when I was going to have another baby and telling me how selfish it is to only have one.   I think it’s important for people to remember that sometimes the family you see isn’t always what people wanted but that’s ok.  There’s nothing wrong with having a single child family, you’re not depriving your child if you only have one. Now we get, gee that’s a big gap.  Where’s the rule book?  Where’s the rules that say you have to say your kids one after the other.  I used to get annoyed if I didn’t share Ruben but now I’ve sort of come to realise it’s ok if I don’t want to.  A lot of the time I don’t because it’s a roadblock to developing friendships.  If you go to a new group or new place and they ask how many children you’ve got it’s my most hated question. I hesitate every single time and its whether I want to go into it because people respond weirdly and then you have to carry their weird responses.

A whole decade of my life was trying to get these kids, its hard work from when I started trying for Dane to when I brought Eden home it was consuming. If I’m getting frustrated at Eden because I’m up for three hours with a child that just wants to be held I think back and go this doesn’t last long.  This little girl is a gift.  She’s fiery but she’s here for a reason I’m sure of it.  I have ways of parenting Ruben. I did a talk the other night about how a baby that only lived for five days has taught me so much.  I have more self-worth because I say no, I did too much for people beforehand.   It’s taught me about real friends and real friendship. I moved down here and didn’t know anyone when I lost him, I didn’t have friends that lived close and met people that got to know me when I was broken.  That sort of thing is precious. I think my husband and I are closer, I think my son is going to grow up with the most understanding and caring heart.  He includes his brother, he’s proud of his brother and I think it’s given him a sense of understanding.  Ruben has given me a lot and although I’m not raising him physically he is still here with me.

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