Waiting ...

Fri 26 Nov

In hospital by 7:30 am.

When we left Little S (at 8:30), we were told that it would be 5 or 6 hours until we would see her again - that's a long time to wait.

I held her on my lap as the doctors sent her to sleep - and then we had to say good bye: definately the hardest part.

I've found that comfort food helps to ease the the worries, so we went to Starbucks for a large coffee (tea for J), a cinnamon pastry and a pain au chocolat. We tried to keep our minds off the impending update that we'd been promised at 1:00. This was made slightly easier when I opened the door to the toilet and found a lady in there hastily pulling up her knickers!

After some wandering around shops and parks and grabbing some lunch, we headed back to the hospital with no small amount of trepidation.

The nurse smiled as we entered the day ward and told us that surgery was going well, but that we wouldn't know more for another hour.

So we checked in to the flat provided by the hospital for those with kids on intensive care, ate lunch and went back to the day ward to be met with another smile - come back in another hour and she should be out of surgery and on to intensive care.

Smiles, relief, but not wanting to be overly optimistic as there were a lot more boxes to tick before Little S was 'out of the woods'

In fact, when we got to intensive care, we were told to come back in another hour as our surgeon was running another procedure on the ward (on a different baby) and so we couldn't go in.

More waiting ...

... and finally we saw our Little S, alive and doing well, scarred and full of tubes but looking not too far off normal.

Tears in our eyes - we're not out of the woods yet but the woods have got a bit less scary already.

It's today

We're on the way in to the hospital ... stomach churning ...

Waiting again

It's been a couple of weeks since Little S was supposed to have her op and now we're counting down again - three days to go.
J is going in tomorrow for another blood test but this time she's taking a friend so it should be a bit less traumatic.
Not looking forward to the week ahead.

Cancelled

An hour and a half ago we were told that tomorrow's op has been cancelled - J called me at work.

It's a complete mind spin and an emotional roller-coaster - it felt like I'd gone into shock.

We're rescheduled for 25 Nov, so we've somehow got to wind down from this mass of fear and anxiety and back to some semblance of normality for another 2 or 3 weeks before going through it all again.

Little S will have to go through another blood test - J and her went to the hospital today for one anyway and there was 'a lot of screaming but not much blood' (J's words).

J will have unpick all of the complex logistical arrangements that she's made for this week and then do it all again in a fortnight.

But I guess if being cancelled is the worst news we get then I'll take it ...

Nearly Baby

Written shortly before Little S was born:

My wife,

The wonderful woman lying by my side,

Has a baby in her belly.

A baby that kicks and pushes and gives her indigestion

And makes her wish that she wasn’t pregnant anymore

But if that baby was –

No longer in her belly –

Born –

It would cry and breathe and poo and smile and drink and walk and be –

A new child

To love

Yet not so long ago

This baby was not –

Anything –

It did not exist

Except as an inkling in my mind

And the mind of this wonderful woman

Lying by my side

It's tomorrow

What should I be feeling?
I think I'm in denial.
Every time I think about it my skin crawls.
Just get it over with - no, don't do it!

I am absolutely really very cute

We have this little sister

She’s small and very funny

She turned up not too long ago

And we all call her Shani

Shani does not do that much

Because she is so small

She sleeps and cries and drinks her milk

But can’t yet play football!

Shani loves to have a bath

And splashing is such fun

She giggles whilst the water goes

All over everyone!

Shani looks so gorgeous

And cute in all her clothes

She smiles and coos and makes us laugh

Our love for her just grows

We have this little sister

She’s small and very funny

She turned up not too long ago

And we all call her Shani

Scared but hopeful

I don’t mind admitting that I’m scared, bloody scared. It kind of helps to admit it to somebody else or even to write it in this blog – it somehow becomes less frightening – a trouble shared really can be a trouble halved.

But however many times I talk to people I am still left with an immovable dread – it’s not the same as worrying that something bad is going to happen – I know that there is no point worrying about things that I can’t do anything about – but there is something that remains that knows that Little S is will be going through a dangerous event, a risky operation, one where all precautions will have been taken by the best surgeons in the country and yet one where the outcome is uncertain and possibly bad.

How can we do this to our little girl?

Yet there is also hope.

Hope that Little S will not just survive but be fixed (at least partly) so that she can move towards a normal life. In fact, even though she has a ridiculously screwed up system of arteries and her lungs are being powered by blood that should be going to her arm and heart, even with this mess to clear up, by far the most likely outcome is that the operation will be a success.

That has to give us hope.

She's so wonderful

Two weeks to go until the operation.

Little S is being more gorgeous and lovely every day

I’ve been able to spend more time than usual with her as there have been quite a few days off recently for Jewish festivals.

She’s sitting up properly in her high chair and on her play mat – eating proper food (well, little bits of cucumber and challah anyway), drinking water herself, playing with toys, smiling and giggling when she sees me (or J or the kids obviously) and always wanting to be with one of us.

Wonderful.

Post Pre-admission

10 Oct

Arrived at 11:00 and started off quite well with various tests: ECG, X-Ray, height, weight, blood pressure, oxygenation, ECHO. It was all going quite smoothly.

Little S was brilliant all day although she didn’t much like the blood test when the nurse was wiggling the needle in her foot trying, unsuccessfully, to get a vein.

Following the tests, one of the nurses spoke to us at some length about the logistics of pre and post operation:

• Little S would probably be in the cardiac intensive care unit (CICU) for one or two nights
• Then transfer to the Ladybird ward on either high or low dependency beds and likely to be home a week or so after the operation
• Whilst in CICU the hospital would find us somewhere to sleep in the hospital grounds and in Ladybird ward they put a z-bed up next to the cot
• Visiting hours are 8am to 8pm but only two at a time in CICU (although they are open 24/7 for parental visits). 

We had a short visit to see the CICU - much less scary than we had envisaged.

But, following another wait of an hour or so, the conversation from the surgical registrar provided us with quite a scary reality check. He described everything very clearly: reminding us of the details of Little S’s condition, what they are going to do during the operation and the many horrible things that could go wrong.

In describing Little S, he pointed out a couple of things that I hadn’t appreciated: not only does Little S’s current ‘plumbing’ put stress on her lungs but, because one of the arteries feeding the lungs is coming off the right coronary artery, the heart is not currently receiving as much blood as it should which could result in further heart problems. Also, the left lung is getting blood from the left subclavian artery which flows from the aorta thus receiving higher pressure blood than it would from the pulmonary artery – potentially creating more problems for her lungs.

He told us that they will use a Gore-Tex tube to connect the reconstructed pulmonary artery to the right ventricle chamber of the heart and then, in six months to a year’s time, they’ll operate again to replace the Gore-Tex with part of a real donated artery and valve and close the hole in Little S’s heart.

The most scary part was that he described the operation as ‘high risk’ – a consultant earlier in the day, Dr D’s boss in fact, had already told us that Little S has ‘very, very unique morphology’ so we had guessed that this is not going to be routine surgery but to hear ‘high risk’ so bluntly from the mouth of a surgeon was quite different.

Once on our own, tears followed.

We know that there is a risk that Little S might not make it through surgery but we have to trust in the doctors, the surgeons, our judgement, God, anything we can grab hold of to give us the hope we need to get through the next few weeks.

Dare to hope

In the lead up to Yom Kippur this year I've spent a fair amount of time thinking about Little S and about how I've been approaching The Day.

I've realised that the worrying I've been doing about what horrible things could happen to Little S is not only counter-productive (as, having committed to the operation, there is nothing we can do to affect its outcome) but it is also the easy option. Much harder to my mind is to dare to hope that things are going to turn out alright.

To hope (as distinct from just blindly assuming everything will be fine) takes faith, courage and belief in our decisions and the risks that they imply.

Is this the same as religious faith? Quite possibly. What is certainly true is that being Jewish has provided me with a history and theology that allows for and promotes hope, however dark the world might appear.

Pre-admission

On the train with Little S heading to the hospital for pre-admission day: tests, meet the surgeon, find out the details of the logistics for The Day and make everything so much more real.

Not sure how good an emotional place we'll be in by this evening.

Surgery confirmed

14 Sept

J spoke to the hospital today and they agreed on Nov 1 as the date for the operation with Oct 10 as ‘pre-admission’ where we get to meet the surgeon.

It’s all becoming far too real.

Waiting

9 Sept

Got back from a wonderful family holiday in the Algarve – I wanted to ensure that we did something special this year as who knows whether Little S will be able to manage holidays abroad following the operation.

We need to make the most of the time before as we just don’t know what will happen after.

But as yet no date for surgery.

Waiting list

A bit later in August

We sent off the form to request that Little S is put on the waiting list for surgery.

Dr E

August


Through a friend of the family we were put in touch with Dr E soon after we found out the extent of Little S’s heart problems.


He is a lead paediatric cardiologist at one of the best units in Britain yet willing to take time out for phone calls about Little S – providing us with more essential information and supplementing what we heard from Dr D.


I had already spoken to him twice before we agreed with Dr D to get a second opinion from Dr E – the two doctors knew each other well and so were quite comfortable with the referral.


Dr D sent Little S’s results to Dr E and, after a few more weeks, we received a letter that seemed to essentially confirm Dr D’s recommendation – we should go ahead with surgery. Dr E and his team had suggested some minor differences in approach but said that Dr D had provided a perfectly reasonable suggestion.


I spoke to Dr E this evening and he confirmed that his letter did indeed recommend that surgery was the right way forward – I guess that this was what we had expected but maybe part of me had hoped that Dr E would come up with some radically different procedure that was much less invasive and risky for Little S.


So now we have two recommendations from two different top consultants, and both ask for our permission to perform open heart surgery on Little S in order to mend her heart plumbing.


As much as we might feel that we don’t want to subject Little S to anything like this, with this second opinion our decision is effectively made for us.

Dr D

27 June

We went to discuss the results of the angiogram with Dr D.

He showed us incredible video footage of inserted dye moving around the arteries between Little S's heart and lungs and it was clear that the 'piping' wasn't right.

Bad news - there was little in the results to change the initial diagnosis so Dr D reiterated that Little S was going to need major heart surgery and would be likely to need to stay in hospital for about a week afterwards.

The initial operation would be to unhook the arteries that Little S has developed to supply her lungs, fuse the two extra arteries together and plumb them back into the heart where the valve should be.

If that goes to plan then there would be further surgery to create a valve and to close the hole in Little S's heart to get her close to normal plumbing. 

However, there is no guarantee - Dr D mentioned that surgery at the hospital for this kind of operation has a less than 5% mortality rate - mortality rate!

Faced with a statistic like that we felt unable to commit to what rationally must be the right thing to do - Dr D suggested we get a second opinion and I mentioned that we were already informally in contact with Dr E so we'd ask him.

Angiogram

Thursday 2 June

We went to GOSH for the angiogram – we arrived at 11 am and left at almost 11 pm. 

Little S had to undergo a general anaesthetic – our first ‘operation’ - she's been absolutely amazing - comfortable with being in the hospital for so long and recovered really well.

You are not alone

If there’s one thing I’ve learnt so far that I would pass on to anyone else in this situation it’s that however bad it seems – you are not alone. Others have been through similar trauma – many of them came through it. It’s not a cure-all message but it helps, slightly.

Heart Children

We received a book in the post - Heart Children - from HeartLine Association which provides lots of information about heart defects – what they mean, how they are addressed, what to expect from a heart operation. Grim reading but somehow reassuring that there are many others out there that have been through the same hell and emerged on the other side.

As we let people know about Little S we’ve found that many friends and family have been, or know people that have been, through similar difficulties – again reassurance – we’ll grab anything at the moment that makes things seem a tiny bit more normal.

The weekend

Sunday 15 May

We’ve spent the weekend at the in-laws and watched the Eurovision song contest.

Over the last few days I seem to see ‘heart’ everywhere: TV, radio, conversation, music, even the Eurovision logo – tormenting me that our daughter’s heart doesn’t work properly.

Diagnosis heart defect

Friday 13 May

Went to GOSH to see Dr D – Little S needed an echo scan to check the source of the heart murmur. Dr D told us that there were significant problems with Little S’s heart – she does have a hole between the lower two chambers (ventricles) of her heart but she is also missing the valve that allows blood to flow from her heart to her lungs. She has been supplying her lungs with blood via extra arteries that she developed before she was born!

In medical terms Little S has pulmonary atresia with verticular septal defect and multiple aortopulmonary collateral arteries: left pulmonary artery from left subclavian and right pulmonary artery from right coronary artery.

Dr D spent a fair bit of time with us, seemingly putting other appointments off, getting a second opinion from his boss and checking the current health of Little S’s heart with an ECG and an oxygenation test – her heart is working fine. But, even though she has no obvious symptoms, we were told that Little S has abnormal internal plumbing and is unlikely to live a normal life for long.

Little S looks and acts like a perfectly healthy baby with no outward symptoms of anything like a major heart defect. So we were in shock when Dr D broke the news to us and told us that ‘we would be spending quite a bit of time with each other over the next months and years’. Little S needs further tests (an angiogram) to ensure an accurate diagnosis.

We left GOSH in a numbed state, only interrupted by the fact that we had to figure out how to get the kids back from school as we took a lot longer at the hospital than expected. To be honest, we thought that they would do a scan and tell us that she has a small hole in her heart that would probably close on its own in time – this was not the case.

Diagnosis heart murmur

Thursday 7 April: Little S has been diagnosed with a heart murmur. It was picked up by a routine check by a paediatrician at Chase Farm hospital shortly before we were discharged. We have been referred to Great Ormond Street for a scan to confirm whether she has a hole-in-the-heart as it would take too long at Chase Farm.

Little S is born!

Tuesday 5 April 2011: Gorgeous Little S was born this morning! What a bundle of joy!

How fragile we are

On and on the rain will fall
Like tears from a star like tears from a star
On and on the rain will say
How fragile we are how fragile we are