Monthly Archives: May 2019

pre-eclampsia

World Pre-Eclampsia Day – Our Story.

Today is World Pre-eclampsia Day.

Seven Years ago 22nd May 2012 was going to be our section date. It was the date that was going to be the final chance of our baby’s birth. It had been agreed months before that I could have had a VBA2C (Vaginal Birth after 2 C-sections). 22nd May was going to be her eviction date.

Instead, we met her and said goodbye long before this day.

Pre-Eclampsia Our Story

February 7th – 23+1 weeks pregnant. I wasn’t feeling particularly well. I had a headache which wasn’t disappearing with paracetamol. And my vision was somewhat blurry too. I had pre-eclampsia in my first pregnancy, so I was fully aware of symptoms. I just was surprised it would be so early. I booked myself in to see my midwife who took my blood pressure, tested my urine and took some blood.

My blood pressure wasn’t worryingly high – when I had my eldest daughter both top and bottom numbers were in their hundreds before I was taken for an emergency C-section.

My urine was showing protein.

Although my bloods returned clear from pre-eclampsia, I was showing signs of Anaemia. It was a relief, as I remembered how poorly I had felt in my first pregnancy.

24+1 – Valentine’s Day.

It was our first Valentine’s Day as husband and wife, we were looking forward to spending the evening together (in between all the HG vomiting). We were also set to receive our wedding album too.

It was whilst sitting in a café whilst doing some rare day-out shopping, that my hands began to swell at an alarming rate. I could watch in slow motion how they were doubling in size, to the point of my skin cracking.

Swelling was one of my main symptoms in my first pregnancy, but was never as bad as what I was experiencing at that moment in time. To be on the safe side, I thought I would book in with the midwife.

“You Must Be An Exception.”

I arrived at my extra appointment, to a different midwife. On first impressions, wasn’t the best. I already felt like maybe I should just wait to see my own midwife at a later date. I explained my symptoms, and how I had symptoms just a week before, she stated I shouldn’t have been tested for PET, as I wasn’t 28 weeks pregnant.

I explained that I wanted some reassurance, that I had, had pre-eclampsia during my first pregnancy.

“You do NOT get pre-eclampsia before 28 weeks, you are only just 24. It is extremely rare to get it before 28 weeks!” She made me feel like, I shouldn’t be there. I told her I had brought a sample of urine, where she reluctantly dipped it and found I had 2+ protein in it. On finding this she finally took my BP, that was slightly high – but that was hardly surprising. Upon seeing the results, she snapped “Oh well, YOU must be an exception! You’re still far too early.” I felt so guilty.

She phoned over to the hospital, who advised me to go over there to be checked. She was asked to check my baby’s heartbeat. I went onto the bed, she asked me if I knew the gender. I said “no”. Her reply was “It sounds like a girl.”

I was glad the appointment ended. We headed over to the hospital.

Not the best way to spend our first marital Valentine’s together.

Although rare, it was found after blood tests, regular blood pressure checks and urine dips; it was found I had early on-set Pre-eclampsia.

I remained in hospital for two days.

19th February – 25+6

I had to go to the hospital every other day for blood pressure checks, and to test my urine. It was becoming my second home. I was allowed home once again, but by the evening I was having regular contractions, so returned to hospital, baby was a lot quieter than normal. Something wasn’t right. I was placed on to the CTG machine to monitor the heart beat and my contractions, as well as her movements. While her movemenets picked up, and the contractions had eased I was kept in over night for observations.

February 20th 26 weeks.

I completed another 24 hour urine collection, there was a significant increased of protein, blood pressure was still raised. Pre-Eclampsia was here to stay.

I was given a growth and doppler scan, it was then the sonographer kindly asked if I knew the sex, and he then asked if I wanted to know. We found out our baby was going to be our daughter.

I was allowed home that day, but had to continue attending the ward every couple of days.

February 23rd – 26+3

I was originally told to make sure I set aside half a day, for monitoring and test results. However when I arrived a HCA said it would take just an hour or so.

Blood was sent to the lab, and I had my BP and urine checked regularly whilst I waited. And then…

A team came towards me, closed the curtains behind them, and began to tell me, that my results weren’t stabilising, they were worsening each time. There would be a possibility of having the baby in as little as 28 weeks. But they were hoping to get me to 32 weeks. I was admitted there and then until delivery.

I was heartbroken at the thought of being torn between being home with my family and staying safe. It was a horrible feeling.

I was given steroid injections – two at 24 hour intervals, to help develop our daughter’s lungs.

February 24th 26+ 4

I had my second lot of steroid injections, all my observations were raising. Nothing seemed to be getting better.

I was told at the Doctor’s rounds that 28 weeks would be the maximum limit, not 32 weeks.

I blamed myself, I was terrified of what was fgoing to happen, whether everything would be okay. Most of all I missed my family.

February 25th 26+5

We had a visit to the special care unit, the intensive care side. I had experience there, with my first baby. But knew that this was going to be very different.

We were told to expect our new baby to be on the ventilator for at least 10 days, she wouldn’t make a sound on birth. The visit made us feel like an inch nbig, everything looked so frightnening.

We returned to to ward, scared of how things were going to go. Whether or not we would ever get to meet her. Would she die even before birth? WE wanted her to be born after 28 weeks, we wanted to get further than their expectations.

However the baby became less and less active. The midwives thought it best to place me onto the CTG monitor, her heart beat was lovely, but she was tiring. I was on the monitor for two hours. The midwives on the shift did their best to reassure me.

My husband was making preparation to go home for the night, when I began to feel strange in my head, and having stomach pains. which weren’t contractions. My husband reported my symptoms, and bloods were taken. They returned and weren’t great. It was then suggested that I would be transferred to the labour ward for one-to-one care. My husband was offered to stay the night. I knew there was some real concern, as partners staying wasn’t an option normally. Overnight, I was on the CTG machine, and was given regular blood pressure monitoring – hourly.

I really wasn’t well.

February 26th 26+6 weeks.

My husband was sent to have breakfast, whilst I waited for the doctors’s rounds.

My consultant came around, and suggested that I should be Nil by mouth. But would NOT be delivering my baby until I had read the Deathly Hallows – I was reading book 4. He didn’t seem to feel that delivery was going to be soon.

He wanted me to have more blood taken, and I was then allowed back on the normal ward, I no longer needed one-to-one care.

I returned to the ward, with some relief that things were going to be okay. An hour later, I was still nil by mouth, so I asked a nurse to check if I could have some toast.

HELLP Syndrome

Witihn three minutes she arrived at my bed, instead of being tol I was going to eat, I was told that I was going to be having a baby instead.

People with pieces of paper, some with no expression, while others you could see their eyes were filled with concern.

Everything was happening so fast; everyone was friendly and explained that baby would be delivered on that day. I was terrified.

The consultant who had spoken to me just that morning, walked by my bed, explained that my liver and kidney functions were not good, and he wasn’t happy with my blood pressure either. He stated that he was off to book a cot in the NICU, and that he would see me in theatre.

I remember I began to shake, my pyjamas switched to a gown, my eyebrow piercing removed. I was asked if I could leave my rings by my bed. Try not to be scared.

My husband was escorted to get some of his own scrubs, he disappeared. It felt like forever until her returned to me. They rushed me do theatre, where they began to prepare me for the c-section.

Her birth

They took a very long time to place to epidural into my back, the shock began to be obvious. I was shaking, I felt freezing but hot at the same time. I didn’t feel well.

As I looked down, I caught sight of the catheter they had inserted, my urine was a mahogany colour. I knew that was not a good sign.

I was assisted to lie down on to the bed, it was then the room became a sea of blue, more and more people came and spoke to me. Rubbing my shoulder, trying to reassure me and my husband. It was terrifying. There was no more space to put anyone else in the room – of course, apart from the tiny baby who was a bout to be born.

They placed the CTG machine onto my belly one last time, I couldn’t remember that last time I had felt her move. A heartbeat could be heard.

A midwife came and sat by my head and tried to offer us reassurance. I begged her to tell me that the baby was okay and breathing.

“Please don’t let her be sleeping, don’t let her be sleeping.” I begged.

Then there was a noise – tiny but wonderful.

“Your baby is not born sleeping.” She said.

“No, definitely alive she kicked me on the way out.” The second doctor added.

Our tiny premature baby had arrived.

After about 5 minutes, the paediatrician brought this tiny towel swaddled baby over to us, so we could see her tiny face. I didn’t know if that was going to be the last time, I saw her alive. They took her away in the incubator.

It turned out that I was just minutes from seizing.

Melody Caitlyn’s birth story born at 13:36 weighing 670g just 23 cm long. 100% pure feistiness.

February 26th, 2012 – April 1st, 2012.   

melody caitlyn

hyperemesis gravardium

Hyperemesis and Pregnancy Guilt

Parenting After Loss

Hyperemesis Gravardium is a condition in pregnancy which brings severe sickness and nausea. It is not to be confused with morning sickness. It is not the same.

I learned about HG when I was pregnant with my eldest daughter and was repeatedly told that the level of sickness was a sign for a healthy baby. It was, I was able to take her and nearly three years later, her brother.

I then became pregnant with another baby, our first with my now new husband. I felt incredibly sick and was sick a few times during the days between a positive test and the day I lost the baby. Being sick from then didn’t mean a healthy pregnancy.

I had another miscarriage between that one and when I fell pregnant with Melody, no signs of HG with that lost baby.

Melody, the sickness began slow and steady. It didn’t seem to be as intense, until I had a minor car crash; not sure whether it was coincidental or whether the HG was just slow to settle in, but it arrived with force.

There were days where I couldn’t sit up for long, because it made me giddy; I was only able to tolerate a small number of food and drink. The toilet became my best friend, it was all very isolating. I shut out the world, because I don’t like people hearing me being sick, so it was easier to stay at home.

The further I got the more I was sick, this had to be a good sign. No more worry of miscarriage, all this sickness would be worth it in the end…

I had bleeding on and off due to being sick, dehydration caused irritable uterus and Braxton hicks, but I knew that once I had hit the magic 24 weeks, all the sickness would be worth having a beautiful baby at the end.

Then she was born at 26+6 due to me having HELLP syndrome, I was very poorly it was the safer option for us both for her to be born.

The hyperemesis cleared up almost straight after birth.

Sadly, she died at five weeks old. The once distant memories of the hyperemesis came flooding back. Questions, Did the vomiting affect her?

Was I eating enough of the right food?

Did I eat too much of the wrong food?

She was the only one I ate peanut butter with, did that hurt her?

Of course, her death didn’t have anything to do with the hyperemesis.

Pregnancy After Loss

Was the most challenging thing I had ever experienced, outside burying our daughter. The pregnancy after her, I was so anxious that the hyperemesis remained bad throughout her whole pregnancy. I had no idea if any of the sickness would be worth it. I had weekly scans, the travel there was difficult due to being nauseas, sometimes that felt worse than the actual sickness!

She was born and the sickness went, we got to take our little girl home.

Now, the baby after her – our final baby.

The hyperemesis was so severe from the beginning, I had a job to move an inch. It was initially thought of a molar pregnancy because my symptoms were so severe.

I ended up with many types of medication including clexane just so I could keep a sip of water down.

The anxiety, which was difficult to work through, I had hospital stays very late at night, but the smell and the sound made me feel sick, flashback of our daughter’s life and death. It was the first year I couldn’t visit the grave on Melody’s birthday due to being so poorly.

The fear that the medications would hurt or kill our unborn daughter was so overwhelming. I felt guilty for hating the HG, for hating being pregnant. I wished everyday for the pregnancy for have moved on quickly for it to be over. I felt so guilty because I was terrified my wishing would also kill her or leave us with a child that would die in our arms.

I just wanted our baby to be here safe and well.

36+6, and days where I would be sick up to 60 times a day, and our daughter was born. She came home.

Hyperemesis triggered so much within my grief state. Knowing the medications, I was on were strong antiemetics, terrified me. But not taking them also terrified me. My whole body was low in nutrients, and I lost weight rather than gained.

Today, on Hyperemesis Awareness Day I need you to know that HG is not morning sickness, and not all babies come home from it.

Hyperemesis can lead to trauma-based anxieties. For me certain smells and being sick and seeing vomit sends me into a panic.

It took me a while to bond with our youngest, and that brought a lot of guilt; but safe to say I am so lucky that she got to come home. fffffffff

post neonatal death

Post-Neonatal Death – Why I Want To Acknowledge It.

Finding the right terminology when it comes to the death of your baby, is just one way of trying to find meaning – a reason. And post-neonatal death to me is important part of our daughter’s story.

Many of us thrive off of stats, I have mentioned before how when someone you love dies you try to find somewhere to fit in. Finding a number in the hope that it will make you feel slightly less alone.

But as I began searching for answers, searching for others it very soon became apparent that it wasn’t going to be as easy at it seemed. It felt even harder to find any acknowledgement for our daughter’s life.

Of course, one of the first things I googled was “neonatal death.” It was there I discovered that she wasn’t technically neonatal.

“An infant placed in a neonatal intensive care unit. Neonatal nursing is a subspecialty of nursing care for newborn infants up to 28 days after birth. The term neonatal comes from neo, “new”, and natal, “pertaining to birth or origin”.

She died in neonatal care, but she wasn’t a neonatal death. The more I delved into her age range, it brought types of death – SIDS, birth defect, hereditary conditions.

She was none of the above, she was a premature baby, who lived and died in the neonatal unit. Who was simply waiting to gain weight to be able to go home, so not even a poorly premature baby.

Hit with areas of after care turning us away due to technicalities of age range, or not dying the right way; made me even more determined to find a corner for her.

“Post-neonatal is an infant between 28 and 11 months of age”

While she has an estimated cause of death due to not having a post-mortem, we’d still like for her to be acknowledged in some way.

While it is important for many support areas to stick to their set age groups and reason. It is important to us to ensure that our daughter’s death meant something.

It is important to families to have their babies acknowledged in the right way.

In 2012 898 babies died post-neonatally. Just over two a day (ONS)

Our daughter was one of 67 to die in April of that year.

Between 2012 and 2016 4300 Post-neonatal babies have died. They deserve to be recognised as much as any other types of loss.

This is why I will keep talking, sharing and including “post-neonatal” death.

Not all babies die before 28 days, not all babies die in pregnancy. Not all babies get to go home.

At 28 days our daughter was bonding with her sister, and waiting to gain weight. at 28 days death was not on the cards.

28 Days Old
31 Days – first smile

When your baby dies

When your baby dies, there are times where it can be difficult to remember, or moments of questioning whether your child ever existed. Especially when they never got to go home to meet family and friends.

Words and acknowledgements matter.

Post-Neonatal babies exist. Don’t forget them.

Our daughter died from overwhelming sepsis at 35 days, just 7 days out side of neonatal death aftercare.

Our daughter mattered.