Skip to main content

Posts

Dear Elijah, on your fourth heart day

Today is your 4th heart day. It's 4 years since we took you down to Great Ormond Street for open heart surgery.
It seems to have crept up on us again.
Another whole year has passed but it hasn't changed how I feel about that day.
Some have said that oh, by now surely you should have gotten over it after all it's been 4 years.
The answer is I don't think I ever will.
I have been thinking a lot about that day, where I signed the consent forms for them to take you and operate on you.
To either save or take your life.
That day was the worst of my life, the unknown certainty of whether you would come back up again.
I held you as they put you to sleep.
They gave me your dummy as they took you from me and laid you on the operating table as if you weighed nothing.
I couldn't even kiss you goodbye in case it was the last time.
That's why I won't ever get over it and those who have been in the same or similar situations would con cur this.
Or, some may question why we choose to …
Recent posts

Day Five - ECG/Echo/ X RAY

Today is day 5 of the #chdphotochallenge and today's blog is all about something we are now very experienced on.
At each appointment Elijah will have a heart scan/ echo which is basically an ultrasound to determine if his murmour is the same, is valve regurgitation has worsened and how his heart is functioning and coping.
We have had many ECG's and echoes and Elijah also had a X Rays whilst we were waiting to go down to GOSH (which was odd as we saw both sets of his teeth!).
A couple of years ago Elijah wouldn't even let the consultant scan him, now after much talking and practising with family and even at nursery he doesn't mind having it done and we look at the different colours and his heart on the screen.
Even now I have no idea what I'm looking at when I see it up on the screen.
It is something that we know quite well in the family too with Greg having to go for an ECG soon due to his family history.
At his last appointment nothing had really changed regardin…

Day Four - Medication

Medication

We are very fortunate that Elijah has never been on any daily medication or needed any oxygen at home.
Other than when he has needed antibiotics, pain relief for illness prescribed by a doctor or hospital.
A couple of years ago we were given an inhaler both brown and blue to use when we believe he needed it, this tends to be when he has a nasty chest infection.
Now Elijah is nearly 5 he is of an age where he understands that when he has to take medicine or his inhaler it is helping him.
He is now also learning about limiting himself if he is tired or ill he knows it is important he rests which is very important for him to learn as he will soon be at school.
To begin with, especially in the beginning before his op we couldn't just pop to the shop for Calpol or Nurofen without it being approved by Doc.
We even had to get his teething liquid approved by the docs at Great Ormond Street when we were down there!
We are lucky, I know we are I've seen how hard it must be f…

Day Three- Surgery

Surgery

I can literally remember every little detail from Elijah's surgery.
Whenever someone asks me about the surgery the first image I have in my mind is him laying in intensive care just an hour out of surgery.
The chest drain stitched into his little chest and seeing the blood drain out of him was like something out of a horror film.
I remember thinking how small his incision mark really was and to be covered by just a plaster!
I can think back and see the ward we were on, the surgeon coming round to draw the arrow on his chest.
We watched Mike the Knight, and C Beebies before we went down.
My legs were heavy, I wondered if this was it.
The last time I would ever see my baby alive.
I then had flashes of us going home on our own.
I held him as he was put to sleep and then he was taken from me and put on the operating table.
I couldn't even kiss him goodbye in case it was for the last time.
My legs buckled beneath me and I was carried from the room.
All my insticts told me …

Day Two- Hospital

Hospital
When talking about Elijah and hospital our lives are very much defined into two time periods.
Pre op, which includes our NICU stay, hospital appointments and emergency admissions to the Children's Asessement Unit.
And Surgery.
When we went down to Great Ormond Street Hospital in April 2015 for Elijah's heart surgery.
I can remember every single thing about those 5 days.
What we ate.
What we wore.
Where we went.
The fear.
It only takes something small, a smell, an alarm and I'm back there again.
Elijah is now on 18 monthly check up appointments with his Great Ormond Street Consultant who has been in charge of his care for 4 years now.
Elijah now knows what to expect from his hospital appointments and is used having his heart scanned now too (along with alot of bribes!)
We talk alot about the appointment in the lead up so he is fully aware of what is happening.
The knot of fear in my stomach is back everytime we walk into the Children's Department for his appoi…

Day One - Diagnosis

Every day for 28 days I will be taking part in the  #chdphotochallenge over on my Instagram but I will also be blogging everyday too.
Today, is day one and the theme is Diagnosis.
I can remember vividly when we recieved Elijah's diagnosis of CHD and Tetralogy of Fallot. It is a day I don't look back on fondly.
We were visited bedside by the consultant on the maternity ward.
We were told via diagrams that Elijah's heart wasn't working correctly.
There were numerous structural abnormalities which were causing his cynatic episodes. In layman's terms his heart leaked back de oxygenated blood, there was a hole that would need to be repaired and thickening of the heart muscle too.
The terms overwhelmed me, I didn't know what they really meant for my baby who was fighting for his life.
Receiving the diagnosis was the day our lives changed forever. We were no longer new parents but heart parents of a CHD baby.
Open heart surgery was needed before Elijah was a year or …

I don't want your pity, just to retell our story.

When I tell someone about Elijah's heart condition (Tetralogy of Fallot a severe congential heart defect) I tend to guess their reaction.
After four years we tend to be met with the same response.
One that is slightly uncomfortable, one that sees them struggling to find the words after we tell them that we watched as our six month old baby was wheeled away into theatre, not knowing if we would see him alive again.
Perhaps a glimmer of relief that it isn't their child that will face struggles, future surgeries, restrictions and life long appointments.
We tend to be met with sympathy for our situation, which is greatfully recieved.
Some have a relative or a friend they know that CHD has also resided in so have an insight into what our lives are like.
Some ask questions which I jump at the chance of answering.
Asking me questions about Elijah's condition means I am spreading awareness, educating others about CHD.
Something that up until four years ago we didn't even know…