World Prematurity Day, 17th November 2017 - My Prematurity Journey.

World Prematurity Day is 17th November, and I only knew about this day after the premature birth of my twins.

This Blog post is my story, a lot of people know about my story but not the full story, so what follows might upset you a little, as I'm telling all.

My story began in January 2014, I wanted another child as I didn't want my son Owen to be an only child, it was important to me because I grew up with 3 sisters.  I had already been diagnosed with a small brain tumour, called a prolactinoma, and my hormones were just not working the same as everyone else's, which in turn made me infertile.  I had started the treatment and started feeling better and decided I would have another baby.

I was, and still am single, so with the help of an infertility clinic, an amazing consultant, who I knew through my work at the hospital, and a very special donor, I attended my first appointment at the infertility clinic.  I was embarrassed when asked to complete the information form with my partners details, because I didn't have one.  But after I explained my plans, the team at the hospital were wonderful with me.

This was in February 2014.  Fast forward to May, I had an operation, and it was decided that it wasn't just my tumour that was going to stop me getting pregnant, I had blocked tubes and endometriosis.  Fast forward to December that year, after a few procedures and hospital stays, I was joking with my sister while out shopping and I bought a pregnancy test.  We went back to her house and I did the test and forgot about it.  10 minutes later I remembered and was absolutely gobsmacked that it said positive.  I was due an ultrasound scan a few hours after anyway, so when the sonographer confirmed I had a baby in there, I broke down in tears of joy.  

Three days before Christmas, my son Owen couldn't see properly, he has Uveitis and we went straight to Alderhey Children's Hospital.  It was confirmed that his was quite bad and couldn't promise his vision would return, so we spent Christmas in hospital.  On the same day he was admitted I started to bleed, so with my family staying at the hospital with Owen, I travelled to another hospital and they did a scan.  Everything seemed fine and my baby was still there too.  Owen had to start Methotrexate injections weekly, and because I was pregnant I wasn't allowed to administer, because its a cytotoxic drug.

Forward a couple of weeks and I started bleeding again, the hospital did a scan and told me I was expecting twins.  (lots of swear words as you can imagine) I thought they were joking with me, because on 3 previous scans there was only one baby.  So, it was, I was having twins.  I woke every morning in a complete panic, how on earth will I feed two babies, how can I cope, but after a week I stopped doubting I could do it, and couldn't wait.

The end of February 2015 I found out I was having a boy and a girl, and in case you don't know, this means they have separate amniotic sacs.

All was going fine, I had a huge belly, and I loved it so much, loved how my body had changed, and I started looking at what kind of cot I would buy for twins.  We went away for Owen's birthday to Centre Parcs, my favourite place ever, and usually I walked miles and miles, but struggled a bit more obviously, but still walked a good few miles each day.  After our break away, I went back to work, and struggled to my do job as it involved a lot of walking around lots of different wards, so I moved to the clinic where I could sit a lot more.  I was exhausted still though, and something didn’t feel right.  The midwife checked me, and all was fine, I just had to take things easier as I was having twins.  I took the following week off work annual leave to give myself a break.

It was April 2015 by this point, it was my week off work, and I was 22 weeks pregnant, I remember going down to the promenade and seeing our local pirate ship and all of us having ice cream.  Looking back to the previous two mornings before that, when I turned over in the morning I wet myself, I remember thinking the babies are pressing on my bladder and I best buy some tenna lady!  The next morning, I was putting the wheelie bins out and walking back through the front door, my waters broke, all over the place, I knew straight away I wasn’t wetting myself and with Owen still asleep upstairs I phoned my mum and sister to come round, and called the hospital.  My sister took Owen to breakfast club, and then took me over to hospital with my mum.  Little did I know that I wouldn’t be stepping back in that house for 7 weeks, I wouldn’t cuddle Owen whenever I wanted, talk to my cats and I wouldn’t be allowed a bath.

At the hospital it was confirmed that my sons water had gone,its called PPROM (Preterm Premature Rupture of Menbranes) both seemed fine though.  I was put in my own room and had lots of consultants come talk to me.  That first night was the most horrific night ever.  they told me that I could go into labour at any time and that the next 48 hours where crucial to my babies’ survival.  I was inconsolable, and having the steroid injections worried me even more.  I didn’t sleep at all for about 3 days and nights, I constantly cried my eyes out.  On the second day, the neonatal consultant came to see me, and said I needed to make some very hard decisions.  There’s a form that myself and the doctors must sign every week about what to do if I go into labour.  The statistics were all read to me, and I was told that If I had my twins now at 23 weeks, If I wanted them to they would try to save them.  This I didn’t know, I always though they wouldn’t intervene till 24 weeks.  They also old me that at 22 weeks, most of the equipment would be too big for them, so with a totally broken heart I decided that if they were born before 23 weeks that I didn’t want them to intervene.  Now a lot of you may wonder why, and really, I can’t answer that, I just didn’t want my babies to be hurt by large equipment if they couldn’t really save their lives.  But I decided that from 23 weeks I would like them to help them.  I had to go through the forms about 6 times in total throughout my stay in hospital and each time was utterly heart wrenching, talking about if my babies would live or die.  

After a few days I asked to go on a ward with 3 other ladies in my situation, because I needed to be around people and not on my own.  I couldn’t have the monitoring that other ladies were having throughout the day until I reached 26 weeks, and that was also heart breaking, as they got to listen to their babies’ heartbeats for about 20 mins 3-4 times a day, and I would just have the midwife with her handheld machine listening for about 30 seconds.  So, when I reached 26 weeks I was handed my own bands for my monitoring, and to celebrate all the girls and I ordered a big Chinese banquet to the ward, we had an amazing evening, and without the 2 girls that were left out of the three, I don’t know how I would have coped during my hospital stay.  We all helped each other out, cried on each other shoulders, we taught ourselves how to knit, and became the knitting club.  I would go the shop in the foyer each day for some treats, and a big ice cream for one of the girls.  We went through so much together.  I had regular scans, and they were concerned that Tilly had a small head, and then on another scan said her legs had not grown.  

When I reached 27 weeks, I didn’t feel at all right, I had a heavy pressure feeling and was told it was just the weight of the babies.  Even after having the plops for a couple of days I told the midwives that I would have the babies soon, and sadly I was eye rolled.  I started bleeding on the Tuesday afternoon, had a scan and was told the babies were still fine, the consultant came, and I told him I didn’t feel well at all, and that the week before I had had green discharge which was ignored.  He told me everything was fine, I was firm and said no it isn’t, something is wrong, I was just the crazy pregnant woman overreacting, and I felt so alone.

On Tuesday evening I went to the bathroom which was an ensuite in our 4-bed ward, as soon as I got in there, blood started pouring out of me, I was screaming, the other pregnant ladies, screaming for the midwives.  The midwife came in took one look and said stay there sit on the chair she was calling the consultant.  After 5 minutes bleeding in the bathroom, and me shouting at the other ladies to stay out, they wanted to come in and hold my hand, but they too were also pregnant, and I didn’t want them to be upset anymore.  The midwife returned with a wheelchair and said she was taking me to the delivery suite.  As we came out into the corridor, I could see about 6 other midwives sitting on chairs having their break drinking tea, and here was me bleeding to death and two other pregnant ladies crying in the room, blood everywhere, and no one came to help my midwife.  I am very upset still about that.

That was the Tuesday night, and between then and Friday morning I spent the whole time in the delivery suite begging them to do a c section.  I was losing blood still, but the consultant said it was ok, and that my babies had good heartbeats.  On the Friday morning a different consultant came in and examined me and said I was losing way too much blood and to prep for theatre, but first I needed a magnesium transfusion, to help the babies brain development.  I really wish this other consultant had examined me over the previous 3 days.  My placenta had ruptured on the tuesday night and this was friday morning!

I went to theatre and sat for my spinal block, I have a bit of a fat back haha, so it took 3 attempts before it was successful.  I was introduced to the team of about 25 people, yes that many, so many people, but each baby needed their own team.  The incubators were set up and the doctors and nurses stood next to them.  a couple of consultants, and soooo many other people, I can’t remember who everyone was to be honest.  The c section began, and my mum held my hand as I felt some tugging.  I heard a tiny cry but then it stopped.  My son Teddy Adam William was born at 15.01hrs weighing 2lb 12oz and my daughter Tilly Ann born at 15.03hrs weighing 2lb 5oz on the 22nd May 2015.  An incubator was suddenly next to me and it was Tilly, I could hardly see her, and they whisked her off to intensive care.  I told someone to also let me see Teddy as they take him out, but they had already left with him through a different door.  I thought they were both fine as I had been told beforehand their heartbeats had been great inside me.  

I went to the recovery room and was there for about an hour I think, I was beaming ear to ear, my babies had been born and they were fine.  The consultant walked past my bed, I got eye contact, but he didn’t stop to talk.  Then my mum was allowed in, and said that they were both in separate intensive care rooms and poorly.  I was finally taken from recovery to meet Tilly, in the theatre bed still, she was vented at birth, and seeing her tiny red body with lines in her stomach, tubes up her nose and the ventilator in her mouth was terrifying, she was the tiniest baby have ever seen.  I couldn’t stay long as they were still doing tests with her, and she had a blood transfusion.

They took me a couple of rooms down to Teddys intensive care, but we were told we needed to go and they would call when I could come back.  I was still at this point thinking everything was ok, so they took me to the ward and after 10 mins we could go back to see Teddy.

Teddy looked much larger than Tilly, but he was very blue and had blood coming from everywhere.  He was vented, had already had a blood transfusion and they had resuscitated him 9 times already.  the consultant told me they had used 2 different vent machines and the one that was currently being used is used on the sickest babies, and that it wasn’t really helping him.  They told me he had a bleed on the brain, and did another scan while I was there, which confirmed the bleed was bigger.  He was given another blood transfusion, but blood was coming from his mouth and nose, and he also had black bruising on his chest where they had tried to resuscitate him.  His face was beautiful, and he looked a right little chunk even though he was only 2lbs 12oz.  

Suddenly I was moved back slightly, and a lady doctor started pumping his chest again and other doctors were doing other things I can’t remember.  It was an instant decision I made, not one I had ummed and arghed about.  I shouted STOP! and told them to stop, the consultant asked me if I wanted them to stop and I said yes, give him to me.  They took his ventilator off and put him on my chest, were they also took the monitoring wires off too.  The first thing I did was get my left breast out, and put Teddys tiny lips to my nipples, I squeezed out some milk.  I don’t know why I did it, it was just a natural reaction, I supposed I thought his mother’s milk could help him.  

My sisters and mum were there, and my sisters took photos and videos of the whole time, and Im so glad I have them.   I know when Teddy Died and he died on my chest while I was cuddling and kissing him, with tears dropping all over his tiny body.  Nearly everyone was crying, my heart had just been ripped out of me and my gorgeous baby had gone.  Owen's dad brought him straight up at my request. He went to see Tilly before he saw me, and he asked me where Teddy was, that is the hardest thing I will ever have to tell my 9 year old son.  

We went to the ward, I had him on my chest as we went back, and I remember people seeing us and saying argh how cute, they didn’t know what had happened.  My sister stayed the night with me and Teddy was placed in a cool cot at my bedside.  He stayed with me for 5 days, because the bereavement team don’t work weekend or bank holidays, so no one from the bereavement team saw me until Tuesday.  This is something that needs to change.  Though I was made up I got to spend that time with him, I bathed him, dress him, kissed all his body and his face and body will always be visible in my mind.

The night he passed away, he stayed in my room with my sister while the midwife took me to go and visit tilly.  She was just soooooo tiny and I was so proud of her and myself.  I was torn between having just lost my son, and my daughter living.  extreme sadness and extreme joy at the same time, my head almost exploded.  To have those two very high emotions at the very same time has to be the hardest thing for anyone.  Tilly was taken off her ventilator and for 24 hours breathed on her own but was put on CPAP the next day, and between spending time at the side of her incubator and going back to spend time with Teddy, I was expressing so much milk.  Because of my Prolactinoma having milk has never been a problem for me, I just had so much of it.

Usually you can’t hold such a prem baby so soon, but when they asked if I waned to hold her I was so scared I would hurt her, she was 24 hours old, and I think they let me because her twin had died.  She was so small that they placed her inside my bra no problem, and I sat there for 20 minutes surrounded by beeps and more beeps from machines.  That’s a noise you soon get used to.  On the Wednesday I was ready to let Teddy go, but I wanted to take him to the mortuary, something else that was important to me.  I said my good byes to Tilly, my sister and mum had put my stuff in the car and came back up.  The bereavement nurses came to my room and asked if was ready.  I had put a new nappy on Teddy, and didn’t dress him, instead I wrapped in in the blanket I had knitted over the previous 6 weeks.  I picked him up and kissed him, then walked down the corridor with my baby.  Some people knew what had happened but getting out the lift people smiled and thought I was taking my baby home.  I took him to the morgue and then handed him to the bereavement nurse.  I then went home, my sister ran me a bath, my first one in 7 weeks, and we ordered food in.  I didn’t want my sister or mum to stay the night, I thought I’d be ok, but after a couple of hours I asked them to come back, I was feeling dead inside.

Tilly Stayed in hospital for 9 weeks, spent in intensive care, HDU and then the last 2 weeks in the nursery.  We had a few scares when she needed another blood transfusion, and had an infection.  But when they started to feed my breast milk through her tube it felt amazing.  I had to go home, 30 mins away every evening, its heart breaking even more when you must leave your poorly child.  They did have accommodation at the hospital for me, so I would take Owen to school then head straight over to Tilly, hoping I’d get there in time to change her nappy, clean her and give her a feed through her tube.  I would leave at 2.30pm to drive back the 30 -45 min journey to pick Owen up from school, and then drive back to the hospital for Owen to see Tilly.  We would stay till about 7pm, and had takeaways most nights.  The cost of having a prem baby is very high while they are in hospital, I don’t think people realise this.  I had to pay 2 lots of tunnel fares twice a day too!  I also had to arrange Teddys funeral, I honestly don’t know how I managed to keep myself all together, 

The first time I breastfed tilly was amazing, my nipple was half the size of her face, and she didn’t manage to get it all in her mouth, but it was start.  Tilly would pull her feeding tubes out so many times during the day and night, I was amazed how she managed to do it, she is a very strong girl.  Seeing other parents take their baby's home was another happy and sad time, I couldn’t wait to take her home.  But it always put back further because I was breastfeeding her and she wasn’t gaining as much weight as they wanted her to.  Tilly was finally let home, but I wasn’t allowed to exclusively breastfeed her, I had to give her a bottle of my milk with a fortifier 4 times a day, all I wanted to do want just to breastfeed her.

Tilly is now 2.5 years old and has had a rocky time, in and out of hospital, and not reaching physical milestones when other baby's where.  But she is catching up, and has a beautiful and crazy personality.

A lot of detail has gone into this blog, but there will always be things I forgot to add, but Im sure it’s given you all an insight to what prematurity is about.

My son Teddy managed to stay inside me for 6 weeks after his waters broke, and he was extremely ill when he was born, but he stayed put inside me to save his twin sister Tilly.

Sarah xx

#premature #death #twins #grief


© 2020 The Sensory Fairy 

  • Facebook
  • Instagram