Stacey: A Rainbow Pregnancy: The Start

This is the first in a series of posts that Stacey is writing about her rainbow pregnancy. Thank you Stacey for choosing to share your journey on Loss Through the Looking Glass. We think lots of bereaved parents who are trying to conceive again and going through a rainbow pregnancy will identify with many of the thoughts and issues you are writing about.

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Before Conception

Our first child Maisie was born at 21+2 on 26th March 2013 at 5.55am. She lived for half an hour. The next 11 months of trying to conceive another baby were some of the hardest, saddest, most depressing days of our lives. There was little love, desire or passion. It was all pure baby making sex with military style organisation. Every time I got my period it was another month that I had to pick myself up and prepare to try again. We had 2 very early miscarriages along the way and it began to feel like we would never get pregnant. I saw other angel parents getting pregnant, getting further along, getting past their hurdle and bringing their rainbow baby home. I even had to go to my SANDS meetings and see a lady who lost on the exact same day as me get pregnant and have her rainbow before we had even passed the first anniversary. It hurt like hell, not only did I have the constant reminder that other people’s lives went on I now had a reminder that angel parents lives go on as well. I don’t say this to upset anyone. I say it because it’s honest; it is how I feel. I think many other angel parents who struggle to conceive after loss feel this way as well and are scared to say it for fear of being judged. They have another element of loss to deal with something that makes them so angry but they dare not say.

Big Fat Positive (BFP) Day

Finally after 11 long months on Monday 10th February 2014 I saw a tiny second line on a pregnancy test. I panicked; was it really there? It was so early my period wasn’t due for another 4 days. I took another, no second line, my heart sank. I had just imagined it. Or had I? I sent my husband out before work for some more tests and took a First Response Test (FRER). It was there, the second line, it was so faint but it was definitely there! This started my obsessive compulsion to take a pregnancy test every time I went to the toilet (I’m not joking!). The lines started to get darker over the next 3 days, it was starting to look good. My miscarriages had never got darker they had started out fairly dark and just got lighter and lighter. On Wednesday 12th February it was confirmed with a darker line on a FRER. For now at least I am pregnant.

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To read Stacey’s next post, please click on the link below:

Stacey: A Rainbow Pregnancy: Weeks 4 to 8

Julz: ROP Testing

Julz has written this post for the blog to raise awareness of ROP testing on premature babies and to possibly make contact with others who want to find out more or can provide more information. If you would like to, you can contact Julz via our blog email address and we will forward all emails to her.

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Did you know there is a global premature baby death crisis? A premature baby dies EVERY 30 seconds. 75% of these could be preventable.

There are so many things that the premature baby’s family encounter; the rollercoasters, the constant fear one minute then the euphoria the next. There are many concerns that come with premature babies, some aren’t well known to parents who have never had an early baby…

Meningitis,

NEC,

ROP,

Anaemia,

Apnoea,

Jaundice,

Seizures,

PDA…

To list just a few.

It truly isn’t just about having a pregnancy cut short, some people are incredibly lucky that if their baby is born slightly early, that they are still able to go home shortly after birth. While for others an early baby is just the beginning. This is why birth is so unpredictable.  Even a full term baby can spend time in the NICU.

I’d like to mention ROP a little more. Retinopathy Prematurity, this is when the retina becomes detached, not form fully before a baby is born too soon, causing in most cases permanent blindness, and is a common outcome for premature babies. The much loved Stevie Wonder was born 6 weeks early and his blindness was caused by ROP. Over exposure to O2 can be a huge factor in why ROP happens, but O2 is most of the time a necessity in the NICU.

Screening is relatively modern but invasive. What does it involve?

Dilating drops are instilled in both eyes, 2-3 doses 5 minutes apart, one hour before screening. Topical anaesthetic drops should be given if an eyelid speculum is used. The baby's eyes are kept open and the exam is carried out with a head-mounted ophthalmoscope (indirect ophthalmoscope). Examination of the retina is enhanced with a neonatal-sized indenter - a small rod-like instrument used to gently depress the globe - enabling visualisation of the extreme peripheral retina.

The examination is uncomfortable and distressing for the baby and is kept as brief as possible; in actual fact some units prefer not to have parents there whilst the exam is taking place, because it is so distressing.

The examination may have short-term effects on blood pressure, heart rate and respiratory function, so minimise the time taken for examination and ensure that emergency treatment is available.

The test is normally performed on all premature babies; those at high risk include babies born before 27 weeks and can include babies as late as 34 weeks, with a guideline starting weight of 1500g. This is a procedure we weren’t told about until after our baby had, had it done. At least three other babies in our unit alone had been poorly post examination, but were roughly a good pound heavier than our little girl.

I am here today to raise awareness that all procedures, no matter the size, should have parents’ permission and understanding. Had we known we would have refused, at least made sure it was delayed for when she was stronger, heavier maybe?  Although the exam wasn’t a cause of death it was a contributor. Leaving us permanently reminded of what ifs.

Also our hospital, since our daughter’s death has said they would change the way the eye test would be performed.

Our aim is to now find a way to fundraise and search for new ways this test is performed, there are various clinical trials, some successful, but the numbers trialled have been too low.

To make a change, we hope that Melody has changed one hospital’s way of doing the exam we hope she can change others too.

If anyone has any information regarding how or where we can send funds please contact me via the blog’s email address, lossthroughthelookingglass@gmail.com

No baby should ever have to suffer for a procedure that isn’t to save lives but to save a way of life.

Having a baby early doesn’t mean a happy ending, just the beginning of a whole new chapter.

John: Shield

Firstly, this is how my wife and all four kids make me feel:

This is how Wikipedia defines a shield:

“A shield is a type of personal armor, meant to intercept attacks, either by stopping projectiles such as arrows or redirecting a hit from a sword, mace, battle axe or similar weapon to the side of the shield-bearer.

Shields vary greatly in size, ranging from large panels that protect the user's entire body to small models (such as the buckler) that were intended for hand-to-hand-combat use. Shields also vary a great deal in thickness; whereas some shields were made of relatively deep, absorbent, wooden planking to protect soldiers from the impact of spears and crossbow bolts, others were thinner and lighter and designed mainly for deflecting blade strikes.”

For me, and for many like me, shields are what we show the world.

The smile that everyone thinks I’m alright.

The easygoing manner that covers up the incredible pain and suffering.

The hand that covers the yawn because I haven’t had a good night’s sleep since Julie told me she was pregnant with Melody, the fear of losing another stopping me from ever truly sleeping fully.

Today two years ago we lost our little girl, Melody Caitlyn Scott.  She was born early, but she was born healthy; she was a fighter like her dad, like her mum.  She was a Scott through and through.

And yet, through a whole list of things, she didn’t survive beyond 35 days.

To walk in to the Neonatal unit and be told “I’m afraid she’s not expected to survive.”  To watch the nurses and staff helping her breathe, just so we could say goodbye.

To be honest, I wasn’t sure what to feel.  I didn’t cry, but my worst nightmare had come true for a second time, and once again I had to watch a daughter die in my arms.  The only time I really cried that day was when I phoned my mum and dad and told them what had happened, and I started welling up, because my brain was starting to catch up with losing Melody.

The next day was a blur, I was in shock, could barely speak, could barely do anything except vomit all over our bathroom at 5 in the morning.  The registrar didn’t help matters, neither did the chaplain at the hospital, when we had to go back for the death certificate.

That was two years ago.

Now, I don’t cry, not because I don’t want to, but because I can’t.

I don’t know why, maybe it’s a man thing.  Maybe it’s something worse, something darker like Batman.

Not sure.

Now, I’m off work for ten weeks, and people assume I’m fine, that I’m just doing it because I can.  I don’t really have any friends anymore besides my amazing wife Julz, because I’m tired of losing friends to the reaper, and have a hard time making new ones without that thought in the back of my mind, especially in the last two years.  Nobody asks me if I’m alright except Julz and the health visitor; no organisation is bothered with helping me through my pain except for a locum GP at my surgery.

Kelsi is not a replacement, she was planned only a couple of weeks after Melody was born.

All I’m saying is we miss her.

I’m not alright.

But the shield will always be there.

Julz: An Anniversary

How has it been two years?

How was this the last thing I remember about being normal?

A simple photo that would become a favourite, but also the hated. The one that we took for granted the we thought we could repeat as a whole family, as her biggest sister was missing that day. The photo we so naively thought everything was perfect.

Only for the next one, taken less than 24 hours afterwards to be the exact opposite.

The ones that followed would become the faces of bereaved parents, not just a happy couple. From the numb and speechless.

Our changing eyes, less heavy than the one before, yet the pain is still as heavy as the first.

Showing the world that we aren’t beaten, if at times we feel nothing but.

We never envisaged that walking through the unit doors two years ago, to be greeted by the words, “She’s not going to survive”  would be anything but a nightmare, an April Fools’ joke.

Broken, beyond repair, no easy fix solution.

No faith, no beliefs would ever put this right.

No believing that she is all around us, or visiting every body else.

No fluffiness or making the sun shine.

No finding feathers, or the butterflies floating by.

The only place she resides is in her mum and dad’s hearts.

My damaged mind searching for why people think they can “feel” her, when all I feel is numb. When I’m told that she can be felt by other people it makes me then wonder does Melody blame me? Does she STILL not belong to us? Our Daughter, but not our own.  Was she ever ours in the first place?

My shattered thoughts searching for a way to go back and change things, when indeed that is impossible.

No believing that everything happens for a reason,

(neither do I believe that Melody died so we could have her sister).

I cannot think why we were allowed to get to know and think our baby was ok.

Then be taken away. What would ever be a good enough reason for this? I sometimes wish I could believe in a reason, maybe it’ll appear one day, maybe it won’t. I won’t get, lost looking.

I have changed, I don’t know who I am any more I don’t want to forget her, of course I don’t she is part of my life, my daughter.

But now sometimes I feel as though I am living for the next milestone.

The next person to walk away from me.

I just want to feel human again.

I’m slowly regaining a social circle, but am petrified of getting close to them,

or letting on too much about Melody or doing something

All trust lost.

I feel awkward in the way I am.

Still having people tell me they don’t know what to say to me.

How do I find me again?

How can I learn to be normal again?

To the outside I put up a mask, a very good one at that.

I’m done with grief,  and watching others grieve for her, when I can no longer cry, “Melody doesn’t wanna see mummy sad” So she won’t…

I want to learn to walk as high as 10 feet tall, rather than the 10 inches I feel at times.

I want to be her mum but not like this.

I miss her so much.

When I look back to see where I had come from to where I am,

I feel like I have paused and feel the same as I did then.

I miss her, there is nothing that will ever change that, and I will speak of her often, maybe now not as much. My heart will always feel that Melody sized heavier.

But learning to live a new life moving forward, but without leaving her behind.

I hope I can stand as strong, tall and as inspirational as the other parents in this community.

I am now a little more than existing, which feels better than it was…

Two years since we said Goodbye.

“As long as I am living, forever my baby you’ll be”

26.02.2012 – 01.04.2012