... and back again

So we made it back home again and Little S is pretty much fine - it was a longer day than we'd hoped but about as long as we'd expected.

The procedure went well - Dr Y was in charge - we hadn't met him before but he has the same calm confidence as most of the consultants we'd seen at GOSH. It was Dr D's clinic today and it was quite good to get to know another of the consultants at the hospital.

During the catheterisation Dr Y checked that the blood was flowing well between Little S's heart and lungs - then, in each of the two main arteries that had been moved during her operation, he inflated a small balloon to enlarge the arteries, increasing the blood flow. He didn't fiddle with the smaller arteries that Little S developed to get blood to her lungs but they don't do much anyway. The arteries that have been inflated should now ensure that Little S is fine until her next operation.

Little S came through the procedure in one piece and was recovering well (although crying whenever any of the doctors or nurses came near her - after a few hours she began to get used to them and eventually was smiling and laughing at them all) until the nurses realized that she didn't seem to have a pulse in her foot! This was the foot on the same leg that had conveyed the catheter inwards (this was not the intention: they had tried to insert the catheter into her other leg but, in the same way as they are never able to get any blood from Little S, they failed to find a suitable artery for the catheter) - it seemed as though the procedure had caused some clotting and reduced the circulation in her left leg.

So for most of the afternoon, the nurses and doctors tried to find a pulse in Little S's foot and we were unsure if we would have to stay in overnight whilst they figured out what had gone wrong and how to fix it - we were assured that this was not anything to worry about: it was very likely to be sorted quite quickly but, worryingly, I could feel that her lower left leg was significantly colder than her right and I'd feel a lot better once Little S felt a lot warmer - in both legs!

Eventually, after they had been dripping heparin into her for an hour and a half, Dr Y returned and found her pulse - Little S could go home!

She's been a trooper all day - guzzling down milk, wriggling incessantly, playing and playing, smiling for the nurses (eventually) and even laying still for about ten minutes during her afternoon ECHO scan (unheard of).

So we've made it back home again and Little S is fine - another 6 weeks or so and we get another chat with Dr D to figure out what to do next.

There ...

Taken Little S to hospital again today for a cardiac catheterisation, hopefully she'll be in and out in a day.
It's similar to the procedure she had done back in the summer - they squirt some dye into her (newly reconfigured) arteries and then use that to track the blood flowing between her heart and lungs and check that her operation had the desired effect.
However this time they may also need to take the opportunity to stretch one or both of her pulmonary arteries using a (very) little balloon inserted into her blood vessels - to increase the blood flow to her lungs.
So, I guess a bit riskier than last time.
It's weird to be back at GOSH - new year, new procedure - we can no longer stay in the holiday oblivion we managed over Xmas time, pretending all was well.
Little S wasn't exactly best pleased to be back either - prodded and measured with stethoscope, scales and sat-meter (measures oxygenation levels in blood - 'saturation').
Currently we're in Starbucks, waiting, listening to cool, calming music - then soon back to GOSH to see our baby ...
... please be well.

Thank you for the schnitzel

It's only recently that I've let close friends and family in on the fact that I've been writing this blog - not quite ready to go fully public.

But their response having read it has been really touching - it's reminded me quite how essential their support has been in getting us and Little S to the (for the moment) good place that we are in today.

It's not really about the schnitzel (although it was brilliant to have over Shabbat in hospital!). It's more the emotional support that friends and family have given us - a few words, a hug, a text to remind us we're not alone, the realization that you are probably in this as well as us - it can make all the difference between a crappy day and a smile.

I guess I'm trying to say: you matter enormously - thank you.

Steady progress

Saw Dr D at GOSH today and Little S had her oxygen saturation level measured (mid to low 80's percentage points whilst 'normal' people are high 90's but at least it's the same as it was before her operation - it won't increase until she has the hole in heart closed as, until then, the de-oxygenated blood is still mixing with the oxygen-rich blood) and had an echo scan of her heart and arteries (which she didn't like as it involved being still for 15 minutes but was done relatively quickly).


Dr D was pleased with her progress - called her feisty - and told us we should reduce her medication to aspirin (once a day, at least until her next operation), two diuretics (each once a day, but only for the next week then stop) and paracetamol if she still needs it (probably we'll reduce it to twice a day but just for a few more days and then stop).


And he said that we'll probably have another angiogram in the first couple of months of next year.


So we left in a pretty positive state, given that last night was also Little S's first time sleeping through the night since the op! Now we can enjoy Chanukah and not worry until 2012 :-)

And back again

We're on our way to GOSH for Little S's outpatient check-up.

Best news is that she slept through the night last night!

Best birthday present ever!

Tue 29 Nov


My birthday this year didn't start in quite the way I had hoped - as mentioned earlier, I spent most of the first 6 or 7 hours walking up and down the corridors of Ladybird ward!


However, by then, Little S had been on the ward for almost a day and a half and was getting better fast - so much so that the doctors have been talking about her coming home today. Today! Just fours days after open heart surgery! Incredible.


But then they found that Little S had caught a virus, in hospital. She was a bit snotty and a bit coughy and a bit unsettled. Was this going to stop Little S? No way - not only did it look like she might get back home with just 4 nights in hospital, she was going to do it with a virus!


So the doctors thought that from a cardiac point of view she was ready but couldn't really send her home if she was still ill and they wouldn't know the results of the latest blood test until about 4pm - this would show if the virus was fading or not.


4pm came and went.


5pm came and went.


By now, the registrars on the ward felt certain that Little S would be going home but they didn't have the authority to let us go. For that we had to wait for Georgie. If he didn't arrive soon, with Grandpa G on his way to pick us up (having run out of a meeting earlier in the afternoon for a false alarm), Little S may well have taken after her late Grandma and busted out of hospital whether or not she had official sanction.


Finally Georgie arrived and gave us his blessing - we were going home!


Elation, relief, amazement - what a birthday present!


And to see the kids so happy when we got home, the whole family back together again - we had finally left the scary woods behind ... until next time. 

Fighting to heal

Sun 27 Nov

Little S has always been a bit feisty - her nickname is 'wiggles' as she is always wiggling around - and she has been putting her desire for life to good use whilst in hospital - refusing to give in until she's able to do what she wants to do again.

Little S has also always been a happy, jolly baby - lots of smiles and laughing - far from the baby in the CICU that was either asleep or crying with discomfort or pain.

Even the crying wasn't normal - whilst she has the breathing tube down her nose and throat, she's not able to use her vocal cords so she cries but no sound comes out - it's heart-rending to see as a parent: your baby crying in terror but no sound.

The nurses gave her various medicines to calm her down and keep her sedated - I'd assumed that we wouldn't even see her awake until the next day - but Little S wasn't having any of it - when we returned on Saturday morning we were told that she had kept waking up during the night despite the morphine that they kept pumping into her!

Although it left her tired and in pain we tried to see it as a positive: Little S doesn't give up - whatever gets thrown at her!

All of the doctors and nurses (and Martin K the surgeon) have been really pleased with how she's been doing - 'better than expected' and 'feisty' were used on more than one occasion.

And now, after just two days on CICU, she's getting moved on the Ladybird ward - most of the tubes are out (including the breathing tube and the horrible chest drain) and they've even disconnected the medication tubes from the central line in her neck (although they've left the actual line in for the moment) and she's almost back to a smile!

Eating ...

GOSH has cafes and a restaurant and there are plenty of shops and places to eat nearby (including a swish new shopping precinct), but the place that really helped us whilst we were there was the Shabbos room.

There is a charity called Ezra U'Marpeh that has a room in GOSH (and a number of other hospitals in the UK) that contains all sorts of stuff that you might need over a Shabbat - grape juice, challah, cold meat, dips, cups, plates, cutlery, etc. All stocked on a regular basis and available free-of-charge.

There are quite a few religous Jewish families that go to GOSH and we met a couple of them whilst we were there - one young guy had come over from Vienna to get treatment for his daughter and insisted that we share in his cholent!

Along with the shnitzel from S&G we ended up with quite a good spread of food over Shabbat - as J said before we got there: 'God will provide'!

Sleeping ...

For the first two nights that Little S was in hospital, we stayed, free-of-charge, in accomodation provided by Great Ormond Street, in the 'Italian Wing'.

GOSH ensures both parents always get a room whenever their child is in intesive care - another way that GOSH feels like it is not just a hospital - they don't just fix medical problems, they think about the whole hospital experience from the child's point of view - not just by putting lovely pictures and toys in every ward, waiting room and corridor but by making sure that parents are closely involved with the healing process.

Getting the parents so involved probably helps on a number of levels - it frees up some nursing time for a start which is no small benefit in these 'times of austerity', but I think more importantly it allows parents to get used to caring for their child post-operation, it gives the child vital time with the people they are most attached to which has to be incredibly reassuring and help their healing process immeasurably and it allows the nurses to see how the child is doing whilst being with parents - a helpful indication of whether the child is ready to go home.

Anyway, having a room next to GOSH helped a lot from our point of view - it gave us a space to crash out in and eat in that was away from the hospital - we needed a breather now and again! In fact, one of the first things we were told when we got to CICU (Cardiac Intensive Care Unit) was that we should make the most of the next couple of nights as once Little S got to the ward we'd being staying with her and sleep would be harder to come by - how right they were!

Two nights on CICU and then two nights on Ladybird ward - J took the first night and I stayed there on the second night. Notice the verb 'stayed' rather than 'slept'. One way of looking at it was that I got to spend hours of quality time with Little S during the wee small hours of my 38th birthday - I must admit that by 4am I was finding it difficult to see it in quite such a positive light. Little S and I got to know the corridors of Ladybird ward pretty well by the end of those long dark hours. However, I was pleased to find that I wasn't getting woken up by any of the three other babies on Little S's ward! And if this was the most annoying thing that I had to go through to get Little S back home then I'd take it.

It was with great relief that I greeted J when she arrived on the Tuesday morning, with the possibility that this might be the day that Little S came home!

Praying ...

Over the course of the next few days, whilst Little S was in hospital, I visited the hospital chapel on a daily basis and prayed for Little S to be safe and that she should have a 'refuah shelayma' (be completely healed).


The chapel was full of Christian symbols (but no crosses), but it provided a good space for prayer and contemplation.


I find in reading the hebrew prayers of the Jewish siddur that it helps to find 'hooks' into the text that relate to my particular situation - this adds to the feeling of being connected to a community whilst praying (as the same prayers are being said by Jews all over the world) by making the prayers feel more individual.


In hospital, whilst reading the shema, I found myself comforted that I found six instances of the word 'lev' (heart) - two in the first paragraph, three in the second and one in the third. They were mostly not related to the physical organ of the heart but it still helped make the prayer more about Little S and her fight to be healed.


Then in the Amidah I found that there is a prayer 'mevorech hashanim' which is normally translated as a blessing for the year ahead - already pertinent to Little S and her recovery - but one could make a translation of "blessed is god who blesses the Shanis" and suddenly it could not be more personal.


Somehow these things helped.

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