Pyjamas

The postman just delivered a package.  It wouldn't fit in our postbox so he rang the door bell.  'Oh Thanks...it's pyjamas!' I told him.  I often tell the postman what's in the packages like 'Oh thanks..it's Santa stuff!" or 'Oh thanks...new wellies!!' I know if I was a postman I'd find it infuriating never knowing what's in the packages that light up people's faces.  I'm sure he thinks I'm a bit zany but invariably, being Irish, there follows a discussion about weather...predictions of rain...or snow...or the scandal of climate change..you know...that thing that was supposed to give Ireland a Mediterranean climate and instead just gave us more rain.  Oh well.

Well anyway I'm sure he's wondering what's with all these pyjamas.  I'll tell you what.  I've been buying them.  For Louise.

All the children's pyjamas in this family are usually bought in Penneys, and then probably in the sales.  Cheap, cheerful and comfy.  Every year Santa brings an unusual new pair or a nightie, in fact it's now a custom and pyjamas appear on every Christmas list.

But this little girl is being treated to a new supply of extra special pyjamas.

You may remember before Louise was born the effort I went to to find a little blanket that was  just right for a sick little baby.  I know now why I made such a project out of that and I'm fully aware that that is why I've been trawling the internet for the prettiest soft, cotton, button front pyjamas.  It was, and is something I can do.  So much else is out of my hands.  There is nothing I can do to force the phone to ring, or to make sure the surgeon doesn't have a headache that day, or that a microscopic germ won't make it's way into a drain wound.  I have no control over those things.  So I'll do the things I can do. I can prepare her pillow-slips and the lovely old fashioned soft sheets her 95 year-old Great-Grandma gave us for her little hospital bed so that it will be as cosy as her own bed.   I won't be able to take away her pain or her discomfort, but I can make sure that when she's given her anaesthetic her I'll be holding her and that when she wakes up, I'll be there and she won't know I've ever left her alone.  I can control that when she's ready to be held, I'll be ready too.  And I can make sure that when her new pyjamas arrive in the post I'll wash the factory starch out of them so that when she's ready to wear them they'll be soft and familiar and smell like home.  I can do those things. So I will.

I can make sure the folks in Heaven are fully aware of what's going on and what I want from them.   Of course God's will is what I want but I can tell you I'm trying my best to instruct request that His will is that my little girl will fly through this ordeal and get on with living a full and not-breathless life.  I can't wait for that.  I know she has some strong advocates up there, not least her Grandma and her siblings watching out for her.

 I know she has one strong guy standing watch night and day.  For those of you who categorise Angels along with Easter Bunny and the Tooth Fairy, think again...they are mentioned no less than 273 times in the Bible, both Old and New Testaments.  Jesus Himself said 'See that you do not despise even one of these little ones, for I tell you their angels continually look upon the face of My Father who is in Heaven'  That's pretty powerful!!  

I remember a while ago listening to a talk  by Ven. Archbishop Fulton Sheen about angels.  He was talking about the modern (wrong) depiction of angels as cutesy children with wings.  Or even worse today...erotically clad women. Whatever one thinks of that, I for one prefer the strong fearless beings described in the bible carrying their swords...the Greek word used is nothing short of Rhomphaia....Oh Wow!  No ineffective weaponry here, Rhomphaia refers to a huge and deadly double-edged sword such as this guy has...now that's who I hope is watching over Louise.

Bacteria BEGONE!!!!

Well, in the meantime...Thursday today...waiting for the phone to ring.  They'll ring us on a Thursday to go in on Monday for pre-op, home Monday evening to go in on Wednesday for surgery.

Tick...Tock...Tick...Tock...

Just hanging in.

Pray for us.

Jennifer xx

Surgeon Visit...Full Steam Ahead.

Before I start I just want to remind you what good hands we're entrusting our little girl to. I have a policy of not naming doctors or nurses in this blog but if you check this link he's the professor who's not photographed in surgical scrubs.  He is considered one of the best cardiac surgeons in the world and though he knows it, he is in no way unapproachable.  He has the exact air of confidence in his ability that any parent entrusting the life of their very loved child would wish to see in a surgeon.  That on top of the fact that Louise is part of only 15% of children worldwide who receive the lifesaving cardiac surgeries they require makes me feel very humble and thankful.

Well anyway, here's how we got on.  John, Louise and I went to the appointment.  We didn't tell Louise it was a doctor or that it was hospital as she's starting to recoil from the idea.  The surgeon's rooms are in a suite in a different part of the city and there's no give-away medical clues apart from a model of the human heart sitting on his desk.  To be honest, we came and went and I'd say Louise had no idea the appointment had anything to do with her at all as there's no examinations or scans involved.

He just asked us how Louise was and we explained her breathlessness on exertion which he was already aware of.  He said that's exactly expected now that her lower body and limbs are bigger than her upper body meaning that the level of de-oxygenated blood that's circulating in her system is greatly increased causing her tiredness and panting.

 First he warned us that in a child that's well, in order for him to subject her to such a big operation and all the possible complications, he has to feel it's justified.  He feels it's justified. So if we're happy to consent, she's ready for surgery.  Obviously we said we're happy to proceed.

This is what he's going to do:



The only difference in this animation is that Louise has hypoplastic RIGHT heart because of her tricuspid atresia rather than LEFT heart.  This is good from Louise's point of view as the left side is a naturally stronger pump.  He mentioned the little fenestration he'll make in the top of the heart which should give her a better outcome as explained in the video. That should either close itself eventually or need a small operation (not open-heart) to close it surgically at a later date.

Now he also mentioned the original pulmonary artery band which was placed in her first operation about 200 years ago.  If you haven't ever read that post, I personally think it's the one which most captures Louise's story...read it here.  Well up to this, the band has been doing a vital job of protecting her lungs.  It will no longer be required so he'll remove it.  The pulmonary artery exiting the heart will no longer be doing anything so I think he said he's going to just close that off from the heart to the site of the Gore-Tex shunt.

I'm writing all this partly to try and get it clear in my own mind too, it's not for the purpose of sounding technical.  The cardiologist could probably write a whole post on his attempts at explaining the structure of the heart to me.  I think he's given up at this stage though he seems to think I can read echo cardiographs as he's always pointing out this and that and this looks great and so on...I just nod and say 'Ooh...yes...' so as not to look too dopey!

After the operation, which is 5 hours, she'll be in ICU for a few days and then on the ward for however long the (very painful) three drains need to be kept in.  They are vitally important as fluid or blood can cause congestion or infection.

She'll be in hospital from anything from a week post op (best case) to a month and a half (not so good). Of course I'll stay with her.  John wants to take his turn too this time, before it wasn't an option as she was breastfed. Last time she was discharged a week after surgery so lets hope for that.

 Louise will be on warfarin for up to a year which is a bit troublesome but the less troublesome medications haven't been tested on children so not used on them

Then he talked about the timing of the operation.  He wants her to be 15 kilos which I'm pretty sure she is or very close to since I've just had to pass on most of her lovely clothes which I thought would last till spring  to her gorgeous cousin. She's had a recent growing spurt, though I can see when she loses her baby fat she's going to be a slim little girl. I must weigh her tomorrow.  We indicated that our preference would be earlier rather than later.  He agreed with that because he said he prefers the children to be younger so that it will be less traumatic for them and there's some hope they won't remember it.  He doesn't realise he's dealing with little miss elephant memory.

So basically we're on phone watch.  I suppose the hospital will contact us.  I know they have the play therapy and the psychological preparation.  I don't know how long that takes.  I've noticed hospitals like CHOP and Boston have those preparations too so I guess we should go along with it, though John's opinion is that her best psychological preparation will come from her own family.  I tend to think so too.

Then ( and this is why I'm happy John came because I wouldn't have had the neck to ask this question) John asked him what was Louise's long term prognosis.

He said she should live many many years on foot of this operation, grow up, have her own children...

WHAT???

When Louise was tiny I was told that she'd be very ill advised to ever become pregnant!!

Now one of the world's best surgeons has said the opposite! I asked him again...would there be any implications if she ever was to become pregnant?  He replied that one of his patients recently had a baby BEFORE her Fontan at the age of 32 and managed very well, so with the Fontan already in place it would be even better and they'd get her through.

I am absolutely delighted.

So now, I'm setting up a comfortable chair beside the phone...this might take a while...tick..tock...

BTW, if anyone would like to donate me a free iPad to keep me company in hospital feel free :-)

I don't think I need to remind you that prayers got us through before...we'll be grateful of them again.  As you can see this isn't minor surgery.

Jennifer xx

Nurturing The Crew Of This Ship

This evening I was putting the children to bed.  The Christmas break is over and school is back tomorrow so I was spending a little time in pillow talk with each child to reassure them that fun is ongoing.  We can go on outings other Sundays if they ensure they have no homework left to do, it's not long until mid-term, nobody likes going back to school and so on...I was expecting huffing, puffing and complaining. I was expecting 'I forgot I had homework', 'I didn't practice piano', 'I never bought the book I need'... What I wasn't expecting was a breakdown.

You have to remember that when Louise was born the children were all three years younger than they are now.  They had never experienced anything like what we all went through before.  In a lot of ways and from my questions to them since, a lot of what was going on seemed to go completely over their heads...well the younger ones anyway.  Her first operation was on a baby they'd only had to themselves for four days, they barely knew her.  The second operation was a surreal experience I don't think any of us would even believe happened only for this blog.  It's different now.

The specialist cardiac nurse told me recently that we'll find this time worse.  I didn't hear her to be honest, it went in one ear and got lost somewhere.  I remembered it this evening as I was sitting on the side of a bed holding a sobbing 10 year old.  You see, Louise isn't a generic baby any more, cute and cuddly and smelling of Heaven.  She's Louise, around whom her siblings world revolves.

Louise has this quirky little way of being soothed to sleep.  She loves someone, anyone, to stroke her lower leg or arm or tummy very very gently with their fingertips.  It's like an off button when she's tired. Her eyes roll luxuriously in her head and she's OUT.  This evening, after a trip to the zoo she was ready for sleep but as usual fighting it.  She shares a double bottom bunk with her 10 year old sister, Isabelle.  Incidentally, poor Isabelle briefly had the bedroom to herself when Peter was finally moved into his own room.  She went from being like a contented dormouse entwined with her sibling asleep and safe to resembling a poor lost soul floating noiselessly around the house each night hoping someone would take her in.  The thing was...nobody wanted her, their beds have grown too small now...or they have all grown too big, there's not really room for two in most of the beds any more.

It was the final incentive to get Louise out of our room.  There was no real medical reason she needed to be in with us...the reasons were unashamedly sentimental.  The fact is...and I say this with some genuine sadness...the likelihood of another child in this family is pretty slim.  Time has caught up on us.  The memory of the longed for twins we lost still brings a tear to my eye..but then we couldn't have had Louise.  We'll meet them in Heaven and this time there'll be no tears goodbye...them and the rest of our children who got there before us...little lives that were but a brief whisper and the world doesn't even know they passed through.  We do though, and so does God and that's all that matters.

Well anyway, Isabelle was delighted to have a new cuddly little bundle to snuggle with and in the mornings when we go in, just as it was with Peter, it's hard to tell where one child ends and the other child begins.  Like two little animals hibernating in a nest.

Tonight Louise asked Isabelle to stroke her tummy while she was going to sleep.  I don't know if you're aware of quite the mess Louise's tummy is, cardiac scars, drain wounds, stitch marks...it triggered questions in Isabelle, how do they reach her heart...how do they break her bones...what's the machine like...how long will she be in hospital...she could go no further.  Clearly I answered her questons on a 'need to know' level of detail and with the gentleness due to a child teetering at the edge of a major life event.  I don't know whether it's been building up or whether it's a new realisation that her precious precious precious little sister is going to be gone from her but this little tween had a heart wrenching breakdown.  And I realised that while the pregnancy and the early days were very much about me as well as Louise...this time I have to put on my big girl pants and focus on the children who know Louise so so much more than they did before.  They're older than last time and they know much more.  The fact that Louise keeps saying 'I don't love no 'opital ' isn't much help to them.  I guess it's not for nothing the cardiac department in the children's hospital has dedicated psychology staff, not just for the child heading into surgery but they are also freely available for the siblings.

I think we'll manage to carry everyone through but I'm prepared that my little women and of course Peter might need a few handkerchiefs and a safe shoulder of comfort before we're through.

Just so you know...it's all triggered by the fact that we're seeing the surgeon on Friday.  We'll get an indication of what timeframe he's thinking of.  The cardiologist has said in the next 3-6 months.  I'll update when we know more.

The cardiologist has also contacted the neurologist and the dermatologist for follow-ups re the new findings in Louise's brain scan.

So...continued prayers are requested and very much appreciated.

Thanks,

Jennifer x