Prematurity 5 Years On

Regular readers of my blog will know

That my beautiful twins

Esther and William

Were born three months too soon

Born at 27 weeks gestation

We did not know if they would live or die

strength wpd14

59 days in hospital

Watching their tiny bodies develop and grow

Feeling blessed every morning

Arriving at the hospital

And finding our tiny offspring

Still living

Still fighting

Not all parents of preemies are so lucky

wpd14 aa milne

We brought them home mid autumn

And kept them safely cocooned there until Spring

We spent lots of time outside

But tried not to go to other places

And we were very very careful about who we let in

grow into your dreams

By summer with their first birthday approaching

I started to truly believe our babies would stay

At their final outpatient check at the hospital

Just before they were two years old

Some of the guilt of not carrying my babies to term began to subside

Esther and William were discharged from paediatric care

Passing every test and assessment with flying colours

Our teeny tiny premature babies

Were healthy, bright and strong

Birthday Play

Birthday Play

I thought our worries were over

I thought we were the lucky ones

Our preemies had survived

And more than that they were thriving

Surely now things could only get better?

Esther and William had a tough start to life

Born too soon, too small

Just as things were looking up

Their baby sister died

we three

I have no idea how Esther and William are as wonderful as they are

So happy, so friendly, so compassionate, confident and kind

They are really rather remarkable

Given all they have been through

Battling grief, PTSD and depression

I have not been the best mummy I can be

Often angry, very often sad, almost always distracted

Frightened of everything

Unable to commit to anything

Esther and William have put up with so much

And done so with such courage and love

The bond between them is beautiful to see

Inspiring to behold

being three

At four years old

Esther had a febrile convulsion

We thought we were going to lose her too

Prematurity does not end at the NICU door

It is always there

Raising it’s head when you least want it to

Starting school

Not starting school

Starting school again

This past two weeks we have been reminded again

That prematurity is not just about babies and birth

In the summer

William bit into an apple

His face swelled up

Below and around his ear

At first we thought a food allergy

Or perhaps a wasp sting

The paramedics came out

William was taken to the doctor in an ambulance

He was named a medical mystery

Piriton seemed to being the swelling down

We were told if it ever happened again we should not hesitate to call 999

Last Sunday night

It happened again

Worse than before

Poor William was so swollen and clearly in a lot of pain

pain

We were asked to take William to A&E

Which Daddy did

He was given IV antibiotics

We had already given Piriton

No one could tell us what was wrong

Because of the position and size of the swelling

William needed to be admitted to a children’s ward

So was taken to a different hospital

No one really knew what was wrong there either

Blocked ducts were mentioned

Salivary gland stones

And infections

But nothing could be confirmed

mystery boy

The next day an ultrasound scan showed general inflammation

But no stones or specific problems

William had to remain on the ward

Being monitored and given IV antibiotics

It was so worrying

Though William was fine in himself

The swelling was only very very slowly coming down

After 3 nights in hospital

A specialist was finally happy to send William home

With oral antibiotics and finally a diagnosis

Recurrent childhood parotitis!

Not heard of it?

No

Me either!

Parotitis is an inflammation of one or both parotid glands.

I believe it is quite common for children to experience this

Though I don’t think I know any who have

What is not common is

Recurrent childhood parotitis

This disease looks like mumps

It affects children from around the age of 5

And episodes recur up to 8 times a year

It can be viral or bacterial

And has different symptoms and causes

For William

It presents as a rapid, aggressive, painful swelling

The first two episodes have been terrifying

Because we did not know what they were

Now we know

We know what it is

And how to treat it

Get antibiotics into him as soon as we can

William’s parotitis is bacterial

And likely an affect of his premature birth

Because he was born so early

The tubes, glands, ducts around his face

Are not as fully developed as they should be

And because of this bacteria builds up

And cannot easily be cleared

Not as easily as you or I would be able to

Parotitis also suggests that William is not producing a large amount of saliva

And one way of helping to clear any infection is to drink lots

And eat foods that encourage saliva production

My poor baby boy

My braveheart

Another hurdle for beautiful you

As I type this Esther is poorly

And I have been on convulsion watch

The pain and guilt of not carrying my babies to term

Never goes away

I feel responsible for every illness and ailment

How different would things be if they had been born at term?

How much bigger, stronger, healthier might they be?

William is still so small

So emotionally immature

Esther so beautiful

So unsure of so much

lilly and sid

I know that every parent feels guilt

Responsibility

But prematurity adds another layer of emotion

Complication

And the loss of a child

The loss of their sibling

More layers on top of that

the three

I adore my children

I love and admire all that they are

I would lay down my life for any one of them

Prematurity does not end at the NICU door

wpd15

6 thoughts on “Prematurity 5 Years On

  1. So true Jennie. I took one of my 27 weekers (then age 5) to the on-call GP last year as I was worried his cough may be starting to turn into a wheeze. I told her his history of prematurity, chronic lung disease & RSV bronchiolitis. She told me that him being premature wouldn’t be relevant to bring up each time I see a GP…! Unbelievable lack of understanding of the long term affects of being born so early, and also the reason why a mum of a preemie may be more overly anxious about a bad cough. I hope Willliam has recovered well from his last parotitis episode, I’ve never heard of it either.
    Please don’t feel guilty though about your babies coming early, it is something you had no control over. Is wasn’t ever your fault that your babies came early, there was nothing that you could have done to stop that. After what you had been through you did so well to keep them safe for long enough to give them a fighting chance on the outside.
    Take care of yourself,
    Xxx

  2. Who is to say that the twins coming early may have in fact saved their lives, nature took over – you were not in control so should not feel guilty.

    How well they have turned out is a testimony of how good a job you are doing, especially given what you have been through. None of us feel as though we are ever doing enough or doing it ‘right’!:)

  3. Bless him, that does look painful. It is not caused by anything you have done though and is not something you could control. Take care, there is light at the end of the very long tunnel you have been going through xx

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

CommentLuv badge