April 28th 2018…this date is etched in my memory, for all the wrong reasons…

“Are You OK?” These 3 little words were to change my life completely. I was 36 and half weeks pregnant. I was having my usual check up. I had been having really painful Braxton hick’s contractions. So my obstetrician,  decided to do an ultra sound to see how far down her head was. I knew straight away something wasn’t right when he seemed to take just that little bit too long, and then when he froze the screen and got one of his text books down off the shelf, “Yes, that(pointing to the screen) looks like that(pointing to a picture in the book)”…… Our yet to be born baby girl had massively swollen ventricles in her brain.

He booked me an urgent ultra sound that I was to go a couple of hours later, and I was to go back to him for the results later that afternoon.

Those 3 little words…..”Are You OK?” I thought I was OK. As my Obstetrician was explaining to me what he had seen on the ultra sound, I thought I took it all in. I was fine I guess with the information he was giving me, up until I got up to leave, and he asked me “Are you OK?” That was the moment I burst into tears, and just cried and cried and cried. They took me into another room where one of the midwives was and called my husband Marcus to come and drive me….while I waited I was offered a cup of tea…..that’s all I remember…..

I couldn’t get in straight away for the ultra sound, I had to wait a couple of hours, just long enough to stew on it, and cry some more. The lady who did the ultra sound was lovely, it took nearly an hour. She explained a little of what she was seeing, swollen ventricles, but said I would have to wait until I went back to see the OBGYN.

“We don’t know what has caused this to happen, it’s nothing you have done, and I have only seen it 4 times in 31 years of Obstetrics. As your girl is only little, we won’t induce you as the last thing she needs is to be born early and risk having complications with her lungs being under developed, when she is already compromised to start with”. I was always a little proud of myself that I don’t have ‘big’ babies, you know it’s the one thing in life that its ok to below average at, and have smaller than average size babies. That was until that day. Our OBGYN called our Paediatrician,  who looked after our boys, Jordan and Jakob when they were babies. He somehow managed to get us an appointment at 10am the following morning. He said we needed to talk through with him what the ultra sound had shown. Before we left my Mum asked him to write down his diagnosis.

Ventriculomegaly, that’s what he wrote down on a piece of paper, so when people asked what it was, at least we had a name for it….

We went to see the Paediatrician.  We talked for an hour or so. He explained he was a general Paed and made us an appointment to see a Neonatologist at the Hospital, who worked in the NPICU. We went to see the neonatologist the following morning. We saw him a couple of times over the next couple of weeks. They still couldn’t tell us what had caused the ventriculomegaly, maybe you had an infection that passed through the placenta, and into her brain……I hadn’t been unwell, but apparently you can pass on an infection to your baby without even showing symptoms. Maybe she had my husbands platelets and they are different to mine and they have crossed the placenta and caused the bleed….maybe, maybe, maybe…..lots of test and we had a weekly specialist ultra sound…

Up until ‘that day’, we were going to have her at Calvary. Our OBGYN had said we could still have her there, but “if she survives her birth she’s just going straight to the NICU at the Royal”, I think that was the easiest decision I had to make over those long couple of weeks. There was no way I was having her anywhere else but the Royal after that comment…

May 13^th 2008. I was now almost 39 weeks pregnant. I hadn’t slept for over 2 weeks.

I was admitted to hospital to be induced the following morning…

It was a quick labour, no time for pain relief…

The room filled, I remember counting 27 Doctors, Nurses and Med Students. Of course by that time I didn’t care.

11:53am, my baby girl was here….

Our baby girl was alive, she was crying, she was so small, and most amazingly I got to hold her. Most of the Doctors and Nurses left the room after she was born. No one really said much actually. The NICU team stayed for about 10 minutes, and then left for a few minutes, waiting just outside the door. They came in every few minutes to check on her, and after about 30 minutes they said they needed to take her up to NICU. So they put her on the trolley, and wheeled her out the door. It was a very bizarre feeling. She was alive and yes I was OVERJOYED. But to have someone take your baby that was 30 minutes old…..watching her being wheeled out the door….I still can’t really explain that feeling. I just sat on the bed, wondering what to do next. ..

We took the walk up the corridor from maternity to NICU. A walk that I would do many times over the following weeks. We pressed the buzzer on the wall, as we had been shown, and we “let” in. We were shown to where she was, but I couldn’t really even see her. I think there were 5 or 6 Doctors and Nurses all around her. One of them explained they were just doing the new born examination….

It wasnt long after that, we were given Veronika’s Trisomy 21 diagnosis(Down Syndrome)…then later that day we were told during a routine heart exam that she had a small hole in her hear, nothing to worry about….the following day we were told she had a large hole and a faulty valve, that would require open heart surgery at a later date…

A week later Veronika had her 1st brain MRI, to see what happened in utero…

grade 3 and 4 bilateral intra ventricular haemorrhages….

and we don’t know how she survived….it would of killed any adult…

and she will never walk….she has an injury to the area af her brain, that we believe will affect her movement down the left side of her body….

I cried, and cried, and cried

and then cried some more…

how can Veronika go to the same school as her brothers….its on the side of a hill….this is my goal….for her to walk into kinder on her 1st day of school…

February 6th 2013….

this date is etched in my memory forever….for a very good reason

4 years and 8 months of therapy, determination, tears, stubbornness, love, dedication, fighting, advocating for therapy, love, and joy later….

…being diagnosed over the 4 plus years with Trisomy 21, severe hypotonia, a congenital heart defect, cerebral palsy, left side hemiplegia, multiple food and environmental intollerances, dyspraxia, and epilepsy

Veronika walked into school, with the support of her walking frame…

and for that moment…

in that class room…

i was the proudest Mumma there….

Veronika started her early intervention therapy when she was a week old….

and today my dream became reality….

….so whats next…

to be honest I have never really thought too much past this day….

but for tomorrow, Veronika has an MRI booked to see if she has suffered another stroke or strokes during her recent seizures…and if all the stars allign she will also have a full dental exam and any xrays needed while she is under the general anaesetic, to see if the primitive reflexes of her smashing her teeth together has damaged her teeth….something new since her seizures….

and the following day she will trail a wheel chair….

but for next week and the week after that….

and the week after that….in between the continuing therapy….

I think it is time for Veronika to enjoy her childhood, to enjoy her start to school, to form friendships, and just be a kid at school….