Reposted from 2013
This morning Natty had the first check-up with her cardiac consultant in an incredible 2 years.That she felt confident enough to leave a gap of 2 years since last covering Natty's chest in jelly and staring silently and seriously at her heart's image beating on a screen whilst Natty initially wriggled then slowly settled to watch CBeebies on a TV on the ceiling, whilst I stroke her forehead as she lay on my chest, speaks volumes.
But why did I feel so nervous last night? Why couldn't I sleep?
What if it isn't all plain sailing?
What if her silent intent turns to a frown of concern as I watch her face for any sign of micro-expression that might bely what she is seeing and thinking?
The heart is fixed for now, but how long will it be until we get another earth-shattering blow?
Will she need more surgery in the future?
I was sure all would be declared fine, my brain said that at least, but there is always that background worry, that which your heart dictates, now a thin veil, but that once was a burden on our shoulders as physical as a sack of grain.
It weighted us down until we physically stooped, for 2 years. In hindsight we didn't realise we were carrying it everywhere and how much it was slowing us down, taking away our energy and drive, our enthusiasm for doing things as a family. In a way we were frozen in fear, frightened to live, to plan, to think ahead.
Natalia was born at home.
Much has been written about that moment on here, but suffice to say she emerged all in one go, a small, blue, silent baby girl. She could not pink up, until the paramedics arrived and gave her oxygen.
After being blue-lighted to the nearest hospital 20 minutes away, initial scans did not reveal a heart condition, but her oxygen levels remained very low and she relied on an incubator to keep her going. Puffy and swollen with fluid she couldn't shift, all the warning signs were there.
|'Bless her heart' is one of Natty's favourite expressions.|
As I am writing this I realise how little I remember of her medical state back then. Or how little I ever took the time to understand. Or how much I have blocked out, too painful to remember.
I would have to delve into a file long since left shut, to remind myself of the list of interventions she was subjected to then. My memories of the moment are blanked by the deep shock Natty's arrival left me in, but also my overriding focus at that time on expressing all the breastmilk she required for feeding through her naso-gastric tube, and my research into what Down's Syndrome really meant and how it would alter our lives (that's the bit that led to the creation of Downs Side Up. There truly was a void that needed filling 6 years ago.)
Today, as we drove into to the hospital, tears streamed down my face as Natty sat in the back singing along to Ollie Murs at the very top of her voice, with all the decibels her young lungs could muster.
And I cried. I cried for the memory of the times I travelled that journey alone, sometimes several times a day to visit her in the early weeks, unsure I was up to the task of being Natty's Mum, listening to the poignant lyrics of a Depeche Mode song over and over and over. "I wish I could take this pain for you."
But also I cried for how lucky I was to have her deafening song in my left ear. And I cried for those precious loved ones that have been lost, either before their parents got to know them or shortly after. The online friends, those I have met in coffee shops, the guy who dug the foundations for our house extention. Those families are in my hearts, and they know who they are.
Bob and I were just waking up at home on the first morning of our second daughter's life, with little 2 year old Mia slumbering between us, when the phone rang...
We had clung to Mia all night, as if for comfort from a familiar teddy, or an anchor to our lives that felt washed away by a sudden tidalwave. Perhaps she was so essential to be alongside because she had no preconceptions of what Down's syndrome was. Nothing came out of her mouth that was intented to try to be helpful or to ease pain, because she wasn't aware of the reasons why there was any pain in the first place. Pure innocence. She just wanted to see her new little sister and enjoy her for who she was. I am so glad we took her lead in time.
|Natty finally came home from NICU, but still faced heart surgery.|
...My breathing stopped and I indicated that I couldn't answer. They were ringing with bad news weren't they? Had our baby died in the night?
In a flash, my shock over her diagnosis was gone and I became petrified that we would lose her. She needed our love and she needed us by her side whether she made it or not.
Natalia had made it though the night. But 2 holes had been identified in her heart, and ASD and a VSD.
On the ward that morning, doctors discussed the need for heart surgery within 3 months, but that she was being stabilised with diuretics and kept on oxygen. Surgery was looking very real. Our baby was fighting for her life, and there were no guarantees of what lay ahead of us. This was not in the plan, not what we signed up for.
Numbly, we decided to have Natalia Christened in the NICU. Bob suggested it, but who was I to argue. If we were going to lose our baby then each should be allowed to spend time as they wished with her. Family gathered around. Cards and gifts eventually began to trickle in.
I spent all of every day at Natalia's side, gradually intoducing kangaroo care, expressing milk day and night but going home to spend teatime and bedtime with Mia, to try to maintain her world in some way. I didn't want her to feel she had lost her Mummy.
At 3 weeks old, I learnt to insert a naso-gastric tube and we allowed to take Natalia home, with full open access to the hospital if we needed it. Heart surgery was to be done when she was stronger. Of course the hard part is when you have no idea when that will be. 3 months? Six? A year? You don't know how long you are going to have to worry and wait for, but we trusted the medical team to do the very best, to sum up the balance between risk and Natty's weight and strength I guess.
With regular heart scans at monthly, then 3 monthly intervals, 'stronger' turned out to be when she was just over 2 years old and one hole had closed itself as she had grown. The moment that had hung over us like a sword of damacles had arrived. Letters spelled it out in black and white. There was huge relief too, that the procedure could be done by keyhole surgery. It sounded so much safer, simpler, less complicated to recover from. And is it wrong to admit that I was relieved that they wouldn't be taking a knife to Natalia's chest...
We were flung onto red alert. I recall a period of 'quarantine' where we feared she might catch a virus that would postpone the date. I cried every time I told someone about the impending op. But I told everyone who would listen. The fear that we would not bring her back home was debilitating.
People were wonderful and sent cards, told us success stories, hugged us. The community and family and friends were rooting for Natty. The same people who had rasied £3500 as a thank you to buy industrial breastpumps for the Neo Natal Unit. People cared. Natty had brought us together already.
The hospital where the surgery was to be done was in Bristol and that lies approximately 3 hours from our house. We went the week before for a pre-op, staying overnight, travelled back and then travelled up the day before for the big day the following week.
I would have travelled to the ends of the earth to get our baby's heart fixed.
Bob and Mia and Grandma stayed in a hotel. We wanted Mia to be a part of her sister's journey, rightly or wrongly. I wanted her to understand, even though she was only 4. Not to feel pushed out. I camped out in the hospital with Natty. We took everything for every eventuality. Toiletries and cleaning products and every meal, microwaveable yet nutritious in a cool box, along with juice, yoghurt, tea, coffee and snacks and fruit. I never count on what I will find in a hopsital and I didn't want to leave her side for a millisecond.
That night, the eve of the operation I was restless, on full alert to respond to Natty's every whim. Worried, yet keen to make a start.
We had planned a sleep study to take place while we were there. In retrospect the most stupid plan I have ever agreed to in the history of Natty.
We were admitted to a busy ward. Natty was wired up for the study and I had just a chair to sleep in. A boy of around 10 was admitted with broken limbs. His wails still haunt me.
Natty wanted me. I climbed into her bed and we hugged. She was restless and countn't settle. By 2am I asked for the SATS machine to be removed.
We should have spent the night before her heart surgery in a comfortable hotel bed with our family around us instead. She needed the sleep.
The morning arrived. We were placed in a small ward, opposite a family who were to become friends to this day.
NIL by mouth. The signing of papers that explained the risk of haemorrage, stroke, death. You sign, but you cannot take it in. Seeing those words in black and white is not something I would ever wish for any parent.
The day crept slowly forward, we got to know each family and their story. We all grew close. The children went into surgery one by one. We all held our breath. One or two ops took a little longer than anticipated. I recall one didn't go to plan and would have to be redone.
Natty was last.
The hunger took over. Our little 2 year old couldn't understand why we weren't feeding her. The boredom got harder to allay.
Our stress levels rose, while Mia happily explored town museums with Grandma, having fun, but close by.
Our turn. This was it. The point of no return.
Our baby was to go to theatre. I recall nothing but going into the theatre with her and my husband carrying her.
A large room with a team of experts in it, just there for our daughter, waiting to recieve her. Bob held her in his arms, just as he had the day she was born when he carried her proudly into the neo natal ward from the ambulance. I just couldn't, so afraid, sure almost, that I would be saying goodbye forever. He cannot bear to take Natty for a blood test or injection, but I will always be grateful that he found the strength to hold her while a mask was put over her tiny face and she surrendered to the anasthestic with a little struggle.
I heard myself sob silently and strong shoulders moved us quickly but gently to the exit. Time was of the essence.
We were helpless, so out of control.
There was absolutely nothing we could do.
That thing I hate about flying because I am not the pilot, it was like that only much, much worse.
We walked. We walked out of the building and down the street and around the block. We sat in a cafe and cried. We walked back and up and down in front of the hospital until we got the call, far sooner than we expected.
The operation was finished and Natty was in recovery.
We sped to her side, stroked her face, whispered our love. Slowly she came round, weary and bloated and flushed, and again it was her Daddy she wanted.
I recall she slept on his chest in a post-op slumber for around 6 hours. No-one took their eyes off her for a single moment.
Family drove for hours to come and kiss her. Mia told her about her day out with Grandma, chattered on about dinosaurs and chocolate and colouring in. Normal stuff. She managed to eat some vegetable stew. Then a fruit smoothie. Oh how happy we were to see that sign.
Then the surgeon came round. Natty took one look at him and, wearing her 'My Heart was Fixed' T shirt, blew the most enormous rasping raspberry that you have ever heard. I have never been so happy to hear a single noise in my life, so realistic you could alost smell it.
That rasperry was her sign for life. To be feisty and different and make people laugh wherever she went from then on.
And so that was the moment that we broke through another glass ceiling. This was the
And we had learnt to appreciate the simple fact of living.
And today we can relax a little. For the next 3 years at least.
In the words of one little lady herself, "Bless her heart."
|Heart surgery and beyond for Natty who has Down's syndrome|
YOU CAN GET ADVICE AND SUPPORT IF YOUR CHILD HAS A HEART CONDITION FROM THE DOWN'S SYNDROME ASSOCIATION OR DOWNS HEART GROUP.