I have been very lost for words this year, here goes…
I sit here with Melody's new little sister, a sister who this time last year was no where near in existence.
I say little, of course she's not, not really, the baby is now 6 weeks, a week OLDER than Melody will ever be.
She's having a growth spurt, the growth spurt that could well have helped Melody's recovery.
The growth spurt that she never had the chance to have.
Another sister who will only ever recognise Melody as a headstone or a photo in a frame.
"The girl in the photo, that's my sister" is how Melody will ever be introduced.
I sit here with the thoughts that our family is complete, but not quite; my brain still struggles to know how big our family is, who I tell the truth to.
New people look at me strangely because I have to count in my head how many children I have, not answer straight away.
I lie sometimes.
I have to, because sometimes it’s the feeling of normality I crave. I don't want to be a bereaved mum every day.
To moan about sleepless nights without guilt.
"But one of your babies died."
To say out loud I'd like a break.
"But you should be grateful."
"At least you have healthy children."
I sure do, they don't replace Melody though.
Normality at times is long forgotten.
I used to love The Twilight Saga (I know!), things like Supernatural; now I can barely stomach them.
Before it was easy going things to watch, the romanticism of Twilight, an old fashioned love I guess, even though it should have been impossible. They even had a baby, a baby that was meant to be a monster, that should never have existed, lived.
Our baby, real life baby, had 80% chance of survival, she died. Now I know it’s not real, but I used to enjoy it, now I can't see past it. I miss watching it, the fairy tale ending of eternity.
We used to watch Supernatural after our full days in NICU, we were fans before, but it was something we could take our minds off the fear of our tiny baby fighting, and fought she did.
Only now Supernatural with demon children, heaven and hell, I know it’s fiction but at the same time it’s our reality, children and babies die, we know this far too well, the Supernatural horrors are our reality.
I don't believe in heaven.
I don't believe in hell.
I wish I did, to want to believe, that maybe Melody is out there. I am hoping come next entry I'll have found a belief or a sign, that she is safe and still around us, not cold and alone.
Where am I?
I'm building my life again, to not feel so heavy.
To not let Melody's death continue to define me…
To ignore the judgement of those who don't understand.
That if I want to talk I will.
If I want to cry to remember it’s not a bad thing, it doesn't make me weak.
To feel normal, because I am just like any other mum.
"I have five children, yes I have my hands full with four pairs of loving arms and a heart with arms I can no longer touch."
I am a bereaved mother.
I am Melody's mummy.
And I miss her.
~~~~~
You can read Julz's previous posts for the blog here:
Showing posts with label premature. Show all posts
Showing posts with label premature. Show all posts
Tuesday, 28 July 2015
Thursday, 17 April 2014
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.
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