August 15th was the day I have been waiting for since the week I got that precious positive pregnancy test result, I had self referred online to my local maternity hospital and they had phoned me a few days later with the date of my booking in appointment and the date of the vital 12 week scan when parents get their first proper look at their baby looking like a baby.
I was so nervous about the scan and so scared they would say there was no heartbeat, this was my only fear but a very real one.
But I had not thought for a second of what they actually ended up telling us.
This was the first appointment hubby had managed to be able to come to.
The sonographer pointed out the limbs, the head and the heart beating away and I was so releived.
The sonographer took the nuchal fold measurement they use to partly assess the risk level of baby having a chromosomal abnormality, I tried to ask her whether mine was in the normal range but she just kept saying they do not just go by the measurement.
We had both noticed the large dark area where I thought baby's belly was, then the sonographer started pointing at it and taking various measurements of it before explaining to us that it was the baby's bladder and that at 12 weeks + 3 days as the scan put me at, they should not be able to see the bladder AT ALL!
She said she would need to rescan within next few days, printed off a pic just of baby's head because of the bladder.
We were told to go back to the waiting room as I still needed to have my blood test to go along with the nuchal fold measurement.
The nurse taking my blood explained if it was bad news and showed I was high risk I would get a phone call within 2 days and otherwise I would just get a letter in the post. (That was a LIE)
After the blood test they actually booked my 20 week san, it is set for October 5th, this of course lead us to believe everything was ok.
Then the sonographer lead us into the "Quiet room" she said she wanted to rescan me the next day and that if the baby's bladder looked the same I would need to be referred to a hospital with a fetal care centre.
She asked us to wait in this room as the specialist midwife wanted to come and talk to us.
We waited for ages in there, then this old midwife came in and was suddenly talking about the baby developing problems with kidneys and not being able to breathe if the lungs could not develop due to the size of the bladder.
She did also say it could just be that baby had not emptied the bladder rather than that baby was not able to empty the bladder.
So we left in shock but desperately hoping for the next day's scan to be different.
So the next afternoon after another sleepless night we were sent to the actual antenatal department's ultrasound clinic (the first scan had been in the early pregnancy unit) Soon after we arrived we had our first big clue things were not right, the receptionist got a phone call from the same specialist midwife checking we had arrived and asking us to wait as she needed to see us straight after the rescan, this was called out to us infront of a busy waiting room!
Then we were called in by the same sonographer, I laid on the bed with my eyes shut willing the baby to empty it's bladder so hard.
The sonographer angled the screen so I was not able to see but hubby could and one look at his face the second baby appeared on the screen and I knew nothing had improved.
He sqeezed my hand as she turned the screen to show me that baby's bladder was so big it wass up to the waist.
Then without us asking she said she would give us a little picture because baby was posing with it's hand up like it was waving, she would not take any money for this picture either (they normally charge £3 each)
We were sent back to the waiting area and were talking and both of us realised we were given the picture to make memories, another bad sign.
We hated waiting there surrounded by all the happy pregnant women and their familes going in and out from their scans.
Then the specialist midwife arrived and wisked us off to another quiet room. She said she was going to phone up the other hospital's fetal care centre and get us an appointment, hubby was pushing her for more information and that is when she suddenly said "What I am saying is it is looking very bleak" We both broke down in tears at that point.
She went on to repeat what she had said about the lungs and the baby dying because at the moment my body was maintaining the fluid levels around him/her but that very soon it would be the baby having to do it by swollowing the fluid and weeing and that as it was not able to wee the fluid would go and baby would not survive.
She also said this condition was often connected to serious chromosomal conditions, the ones that would also kill my baby.
She got us glasses of water and a box of tissues and went off to make the referral appointment.
She totally broke my heart by giving us no hope what so ever and even said she expected us to get sent home from the specialist with tablets to begin a termination and went on to explain how the whole awful thing would work.
When she came back she said the soonest we could be seen was Monday 20th Aug (this was Thursday) hubby was desperate for us to be seen earlier and talked about going private etc but in the end we decided it had to be Monday.
So then we had to go home and try and explain to our families and more importantly our 3 boys what was happening, to make this even worse it was our youngests 10th birthday. (Also turned out to be the very last time we saw my mum, the boys nanny alive)
We carried on as best we could that evening taking the kids out to Pizza Hut as promised for the birthday boy.
We spent the entire weekend googling and searching for hope and information, it was the longest weekend.
We drove the kids to the inlaws on the Sunday evening so they could stay there while we went to the appointment as we had been told it would be a very long appointment.
At the hospital on the Monday (Yesterday) we were seen an hour late, it was hard but we knew the specialist had managed to sqeeze us in so had to accept the wait.
The specialist was a really warm man, he asked us a few general questions and then did another scan, he took his own measurements of baby, the bladder, the nuchal fold and everything else.
Again I could not see the screen at first and hubby could, I watched his face again, he grabbed my hand and just mouthed yes, meaning poor baby's bladder was still massive.
I tried not to watch the Dr's face, he said he would talk to us after he had done the scan.
He repeated a lot of what the midwife had said about it possibly being chromosomal and about the fluid and bad prognosis if the bladder got bigger.
He explained that I would need a CVS test to check this and that if it was chromosomal they would not be able to do anything for baby, but that if it was not then it would mean very closely monitoring the bladder and other organs and hoping for the best, but keeping in mind if things changed it would be the end. He also mentioned operating at birth.
I had to go and empty my full bladder and be scanned again to see whether the placenta and baby would move into a better position for the CVS test, I did but the position was still not right so now I had to go and half fill my bladder and scan again.
This time as soon as he put the scanner on me it was perfect position and he would be able to do the CVS, he had been chasing up various test results from my hospital that they had not given me, including the nuchal fold final result which showed I was HIGH RISK, 1 in 90 I was so angry no one had let us know.
The Dr said it justified the test even more.
It was horrific, he gave me a local anaesthetic to numb the skin, this is the only part they can numb so I felt the massive needle go through my abdominal wall, through my uterus and into the placenta and I felt him pulling it around as he took the cells he needed.
Then he checked the sample to make sure it was good enough and luckily it was so he did not need to do it again.
I was given some paracetamol and advice about risks of what had been done again, then they gave us a piece of paper with the information to phone on Friday morning at the earliest for the first part of the results which would say whether baby had Downs Syndrome, Edwards Syndrome or Patau Syndrome, the Dr had said it was more likely to be the other two rather than Downs (the other 2 he described as not compatible with life)
He booked us an appointment to come back in 2 weeks when the remaining chromosome results of the other possible 49 conditions would be in.
We drove home gutted again, I had been told to rest so had to stay home alone while hubby drove all the way back to his parents place and back with the kids.
Today is another of our sons birthdays and while hubby has had to go back to work I am trying to keep things as normal as possible.
I am sorry this is such a long post and if anyone has even read it, thank you.
I am going to share both our newest scan pictures of our precious little Rainbow baby who we will know more about in a few days including whether it is a boy as I suspect now or a girl.
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