Memories

When we bought our house it was for life.  I had honestly thought that we would be there forever.  So, being in the position we are in now is frustrating.

Losing our house was devastating.  It was our home, our investment for our children.  Now its all gone.

Walking around the house the day we were repossessed was awful.  It was a shell of the house we loved, empty.  I felt completely defeated.

I relived memories.  Having flashbacks in every room as I said goodbye.  Joshua's bedroom; goodnight stories and songs to send him to sleep.  Georgia's bedroom; sitting up for hours, terrified.  The kitchen; Rob and I trying to deal with the diagnosis.  The dining room; Georgia's first smile, Joshua's first steps.  Finally the living room.  The only vision I had in that room is one I will never be able to get rid of.  Georgia lying on the floor, blue, not breathing. 

As I walked away from the house I had hoped I could leave that memory behind.  Unfortunately it is still there as if it was yesterday.

So, fast forward eight months and here we are, in a rented house.  It is freezing cold and no good for Georgia.  We cant do anything about it. 

I am now looking for somewhere else to live.  Is this how it will be now?  Constantly skipping from one house to the next?  I would say we miss the stability of having our own home, but it was just as unstable as this one.  I suppose I miss feeling stable, even though we actually were not.

I have been to see two houses so far.  They were both awful.  Both full of mould and nicotine stains on the walls.  I don't want either of my children living somewhere like that, especially Georgia.  I guess I am just going to have to let her health be affected by where we live for a while.  The council don't see us as a priority.

No mortgage for us either for 6 years.  Bloody bankruptcy.  Although, we would never be able to get a deposit anyway.

So for people like us we have no option but to live where we can and make the best of it.

We have the community nurse coming tomorrow for a cough swab to see if we have won our battle against that pesky psuedo bug. 

If not then its off to Southampton for IV's. 

They want to do her surgery to remove her tonsils and adenoids in December so perhaps they might link the two together, I hope so.

Anyway I am off to see two more rentals tomorrow, maybe I might find one that is not totally disgusting! 

Who do we love?.........

...........Peppa Pig!


Huge, monumental breakthrough! 

I gave her physio, she didn't cry!  Not even a whimper!

I am so chuffing happy about this that I am grinning.  I know it is only a small thing, and tomorrow we will probably be back to screaming again, for now I am happy.

So I decided to take her unawares.  She was happily sitting watching Peppa Pig, WHAM, stuck the mask on her face.  She tensed slightly, then just sat back and relaxed.  All the while pushing the air out with every breath, making her lungs stronger. 

Is that just the most beautiful thing you ever heard?.........Probably not.  But it is for me!

A massive breakthrough.  I feel like a weight has been lifted. 

Now I am a little scared that tomorrow this may not happen.  We will have to do exactly the same sequence of events.

All squeamish people, read NO further.

I know that the physio and antibiotics are working though as the amount of gunk coming off her chest is amazing.  It sounds like there is only one drummer in there now, as apposed to thousands!

Story of the day:  Josh wanted to pinch a bit of toast from Georgia's plate earlier and as he went to grab it she sneezed on it.  It put him right off.  Am sure there is a moral in there somewhere!

Before I go, I would like to send love to Gemma (lungsbehavingbadly), and thank her for her advice and support.  You truly can relate to today!

PCD is here to stay

I think I may have underestimated PCD.

For two reasons really. 

1)  I assumed that nothing would be as bad as heart disease.

2)  I was very naive.

All of a sudden this deadly disease has reared its ugly head.

I was told by someone at some point to not look on the internet into the problems Georgia has.  This was probably the worst advice.  I wish I had looked.  I would have understood what the diagnosis of PCD meant for her quality of life and it would not have been such a shock when she became ill.

We have a visitor.  Pseudomonas.

This horrid little bacteria has set up home in Georgia's lungs and decided to make itself known to us via a cough swab she had done.

I was so shocked.  She had a little bit of a cough and was generally unwell but I didn't for a second think it was anything but being a little under the weather.  Note to self - she will never be just a little under the weather.  When she gets ill, she is really ill.

I would imagine this little bacteria has come from Josh being at pre school and bringing it home.  Mainly as Georgia has not really been out.  Now it has turned to winter we don't take her out for long amounts of time.  So all you mummies and daddies out there that send your kids to school when they are feeling ill, remember that they could be spreading those germs to poorly kids like Georgia!

So now we are on a course of oral antibiotics, not nice ones either!  This is the start of our battle against the pseudo that has taken up residence.  After the course we will have another cough swab done to see if we have won or not.  If not, off to hospital we go for IV antibiotics.  Anything to blast this little bugger away.

This is my first meeting of this particular bug, from what I have read it seems to be a tricky one to get rid of. 

All of a sudden I am more scared by PCD than I ever was of the heart problem.  She is going to be coping with this for the rest of her life.  There is no surgical fix like there is for her heart.  That's frightening.

I know you are all going to say that it wasn't but I feel like this was totally my fault for not being more forceful with physio.  So I have morphed into 'mean mum'.  She may not like it, she may scream and hit and kick but it is for her own good. 

I keep hearing from everyone that it will get easier. WHEN??????

So far every physio leaves us all exhausted, physically and emotionally.   I know it is just something we have to do.  I just wish I didn't have to fight her all the time to make her better.

Safe to say I am having a hard time with PCD at the mo.

It took so long to get a diagnosis for it, I really didn't understand the implications.  Even when she was diagnosed I just shrugged and said 'oh well, just another thing for her to battle'.  I didn't know.

Sometimes I feel really stupid. 

I don't know if anyone else feels this way.  Her respiratory team are fantastic but are miles away.  If it is anything urgent I have to go to our local hospital.  I have taken to carrying around the PCD leaflet, I am so fed up with explaining what it is. After reading it people just seem to underestimate the condition.  I told one particular doctor it is a chronic lung disease and she looked at me as though I was crazy.  I suppose that as she had not heard of it, I must be lying.

You say Cystic Fybrosis, people know exactly what you mean.  Everyone has heard of it.  Mention PCD they think you are talking about the Pussycat Dolls.  Its so frustrating.

Anyway, sorry about the rant.  I am only just discovering the wonders of PCD myself, it sucks.

On a lighter note Georgia has finally started forming words.  'Hello' is a favourite.  She also has become very artistic, she loves colouring in the walls!  Best not link my landlord to this blog now!

Midnight Adventures

Sometimes there is no warning.  Just when I get comfortable and feel secure, all of a sudden, out of the blue, a massive wake up call.  Literally.

Georgia had a bit of a cough yesterday, nothing out of the ordinary, just the normal trying to clear her chest.

At 2:10am this morning, I sat bolt upright in bed as if I had been shocked.  I have no idea why.  Maybe I heard the cough, or maybe it is just intuition.  I could hear that rattling breathing echo through the baby monitor, my stomach contracted in fear as I was catapulted back 31 months.  I had got so used to Georgia being well.  Complacent is more the word.  I had finally stopped setting up a hospital bag for her, just in case.  Well that was a mistake. 

To say I was terrified of entering her room is an understatement.  I didn't hesitate at all, but the fear was still there, just as it always has been. 

Her breathing was strained.  She was having no problem breathing out, breathing in was like she was trying to suck air through a blocked straw.  She was all blue around the mouth but with bright red cheeks.  I started mentally packing a hospital bag and mentally preparing myself for one of our midnight hospital adventures.  Firstly, I needed to decide if she might need oxygen, this would require the wonderful help of the ambulance service.  I woke Rob up to ask his opinion.  We decided that I should take her.  So, I called the children's ward as I packed up her bag.  Desperately trying to wake up so I could think straight.  I know now that I was still not fully awake, I left the house without shoes on!  Don't worry I am not totally crazy I did go back in to get some!

I am just so out of practice that I forgot my little hospital routine.  Whilst driving there in the dead of night, all I could think about is the amount of times I had done this trip.  Just Georgia and I.

The doctor decided that she did have a chest infection and that she should be fine with calpol.  Which then sent me into the ravings of a sleep deprived worried mother.  So we came home.  Georgia is still not well.  It sounds like little fireworks are going off inside her chest every time she takes a breath.

Every time I leave St Marys at night I get this weird feeling.  Its so quiet and spooky walking across the car park.  To me it feels like I am being followed.  It doesn't help that they have a freaky looking clown statue outside! 

It feels more like someone wants her.  Like they are waiting for her.  I hate it.  I get this feeling a lot.  Like she has an invisible stalker.  I mostly get it at the hospital.  Well, bugger off, you cant have her.

Our midnight hospital adventures are something that will be with us for life.  Last night has taught me a huge lesson.  We are not normal.  We will never be normal.  No one knows about our adventures, or how it feels. 

I wish we could be normal, to have a simple life, no complications.  It is just never going to happen.  For now, it is something we do, together.

Angels

I haven't blogged for a while.  I suppose I didnt really feel the need to anymore.  I have got most of my troubled memories off my chest.  Or so I thought.

Just one conversation can take me back to a way of feeling.  For the person in question I was talking to I will not mention what was said.  This conversation completely took me back to being pregnant with Georgia and having to make the decision to keep her not.  As hard as it was, it was also easy.  That sounds bizarre but in that situation all I could do was imagine how it would feel to be holding my baby when she was no longer alive, to see if I would be able to cope with the knowledge that it had been my decision to do that.  Don't misunderstand me, I can understand how that decision can be made.  I wonder if, had we known how hard it was going to be would we have made the same decision?  Who knows. 

My heart breaks for the women who don't get given the choice.  That just lose their babies with no warning.  That, for me, would be harder than anything we have been through.  We have been granted time, time to know her, time to love her, time to show her she is our world.  For that I am so grateful. 

So I am having a day feeling torn between feeling great for having our little Georgia and feeling sad for all the ladies that only knew their babies for a short time. 

These women should be recognised for the strength they have.  I am not sure I would cope.

Black clouds and glowing toes

I always told myself I didn't suffer with depression.  I fought it for years.  It's like the silent disease. It doesn't give you any warning either.  One day I can be perfectly happy and just getting on with life, then the next I wake up with a huge black cloud around me threatening to suffocate me.  I suppose it has always been there, I just never acknowledged it before.  The thing is, you cant see it.  I have always hidden it really well, but now it has started to seep through to everything.  I feel so alone most of the time, even though I am surrounded by people. 

Nobody really understands either.  It's a selfish, lonely, unbearable disease that makes it hard to function.  I tried tablets, they helped for a while.  I tried therapy, but I felt like I was being too self involved.  So now I just live with it.  The good days outweigh the bad, for now.  If it ever gets to the point where it takes over then I will have to do something about it.  After all, when I am under my black cloud I am really difficult to live with. 

I took Georgia over to Southampton a couple of weeks back.  She needed to have a sleep study.  I was so nervous.  It has been quiet a long time since she has had to stay in hospital overnight. 
The afternoon that we were due to leave I was rushing about trying to pack everything she may possibly need.   

It was not just the staying in hospital really.  It's also that extra hour on the ferry where I need to keep her entertained.  It cost me a fortune to get the ferry over.  Yet another expense when we struggle to even feed us all.

Georgia was so good though.  She is so well behaved, we are lucky.  She fell asleep at 7.30pm and we managed to get the monitors on her without waking her up.  I laid on a camp bed beside her cot just watching the little glow of her sats monitor through her sock.

The doctor on the ward came in to see us at 10pm.  She said she needed to listen to Georgia's heart.  Why she couldn't have done that when she was awake I will never know.  Of course, she woke her up.  Georgia was then awake until 3am.  So it was more of an awake study! 

In the morning we were both so tired.  I packed our stuff and was out of the hospital by 7.15am.  By 8am we were on the ferry, finally arriving home at 9am.  It was a long night.  But it is done now.  Thank god.

So the results have shown she will probably need her tonsils and adenoids out.  Easy for any other child.  Not for Georgia.  I keep having horrific flashes of ventilators and a little blue Georgia.  What if they try to take her off the ventilator and she has another collapse?  I know she is stronger now but I really don't want her to have to go through that again.

We have 3 appointments in September over in Southampton.  I have no idea how we are going to pay for the ferry.  We can't afford to pay our bills, let alone travel.  We have been made homeless once, I think it's soon to be on the cards again.  I don't understand how other people cope.  It's not like we go and splash out.  All our clothes have holes in them, the kids have been playing with the same toys since Christmas.  We never have a holiday, we never go out to places that require money.

Where is the help for the people that really need it?

Is she just unlucky?

To look at Georgia now, you would never know.

You would expect that the pain she suffered would show in some way.  I don't know how, but I expected her to always carry the horrifying experience with her.  Up till now, there is no trace of it.  Maybe it is because I carry it with me.  It's probably more because I carry enough for both of us!  I prefer it that way.

I don't think Josh has any lasting memories of any of it really.  I am pleased about that.  He is young enough to forget, or not totally get the gravity of certain situations.  I would be devastated if he remembered her going into respiratory arrest.  It was frightening to us, imagine how it felt for a 3 year old.

After Georgia was released from hospital, I was just waiting for the next drama to happen.  When it didn't, I felt a bit lost.  I know it sounds stupid, but I felt like I had nothing to fight anymore.  So what I did instead was re live everything that had happened.  I started to drive everyone insane with my constant chatter, I repeated myself all the time.  It was my way of dealing with it. 

That is one of the reasons for this blog.  I don't have to drive everyone crazy, I can write it here and then it's done.

This way, our journey is forever told.  It's a comfort to me to know that I have shared it, as awful as it was.

I know we are not finished yet.  I know there is more but my little family is doing well, for now.  We are happy.  Happier than we have been for a long time.  It has put things into perspective.

Before Georgia's surgery, she had a nasal brushing done to test for something called PCD.  Primary Ciliary Dyskinesia is a respiratory disease that would cause the symptoms she was showing.  Blocked nose, coughing, constant chest infections and colds.  The nasal brushing is just a tiny little brush that looks like a cotton bud for a Barbie, being brushed round the inside of the nose.  It doesn't hurt, it just is very uncomfortable and made her eyes water.

Unfortunately the test needs to be done when the patient has no virus, Georgia always had a virus! 

Obviously, the first test was inconclusive.  So we travelled over to Southampton again to get another test.  Again, they couldn't diagnose. 

Our lovely PCD nurse, Amanda, gave us a course of antibiotics to give Georgia.  This was to try and get a good brushing and hopefully get her diagnosed.

Again, this shows the determination of the staff.  Amanda was brilliant (and still is), she had a feeling that Georgia did have PCD.  She finally took Georgia's case to a meeting of all the PCD specialists.  We finally got the diagnosis.

PCD is still in the research stage.  To treat it, Georgia is on constant antibiotics (to stop any infection) and I have to do daily physiotherapy.

My GP once told me that he thinks physiotherapy is a load of rubbish that was made up to get money out of people.  Well he is wrong.  If he saw the difference in Georgia since starting physio he would eat his words.

I am not saying the physio is easy.  It's awful.  I have to hold a little mask over her nose and mouth for 5 minutes a time.  At the moment I am only doing it once a day but I will have to do more soon. 

Georgia screams.  She thinks I am trying to stop her breathing.  On top of this, I worry that I am putting more stress on her heart.  It's a vicious circle.  It's good for her to cry as it builds up her lung strength, it's bad for her to cry as it puts pressure on her heart.

I now have a nasal spray for her too.  It shoots a small spray up her nose to unblock it.  It seems to be doing the trick.  She quite likes that too, it's not as bad as physio.

I read an interesting theory.  If you are not interested in the science of it, then skip this last bit! 
The cells that are created when you are conceived, are cilia.  As Georgia's don't work as they should, they created her the wrong way round.  The heart is the first thing to develop.  Maybe PCD is the reason for all of her problems.

Rob is a carrier of the PCD gene, so am I.  You need both parents to carry it.  Josh was lucky, Georgia wasn't.

Happy home?

The day Georgia came home was a mix of emotions.  I was happy she was home and we didn't have to keep juggling our lives.  I was scared that I was going to do something wrong and not look after her properly.  I was worried that I wouldn't notice when something was wrong.

Sometimes life gets in the way of everything else.

2 weeks later Georgia, being the little monkey she is, pulled out her feeding tube.  That's the thing with her, she will only do things when she is ready, you can't force her.  I made the decision there and then.  I was going to leave the tube out and see if she got hungry enough to eat.  I know that is a quite harsh way to do it, but if I didn't then she would depend on the tube forever.

All day I tried her with a bottle.  All day she refused.  I started to doubt myself by the evening.  I was planning to try her one last time, if it didn't work then it was another trip up to the hospital. 

I packed a bag for her.  With a baby you take so much with you everywhere you go, with a heart baby you take everything bar the kitchen sink!  While I packed it, Rob tried her with a bottle again.  She drank it. 

Sometimes I need to just give in and let Rob do it.  It's not that Georgia prefers him, it's the fact that I had tried all day, and every time I got more and more stressed.  She could feel it.

So there you have it, again she does things in her own time. 

From September to December, life felt almost normal.  Georgia was still getting chest infections every 2 weeks and we still had the odd trip up to the hospital with her, but it was as if everything had slowed down.  It was not so out of control.

On Christmas eve, we received our repossession court order.  The bad times were not over yet.

We had done nothing but worry about the house and our debts, all of which we incurred when Georgi was ill. 

Rob and I were declared bankrupt on the 26th Jan 2011.  Our mortgage was to be included in it. 

We had to vacate our house on the 15th March 2011. 

Now we were homeless. 

Little miss smiles

Georgia was finally moved back onto the Nursery part of the Ocean ward 31 days after her admission.  She had been weened off morphine but was hanging on to the last little bit of oxygen.  If they took the oxygen off her, then her sats would drop slightly. 

She had started smiling again.  Really big beaming smiles.  I was so proud of my beautiful little brave girl!

One morning when I arrived on the ward, I was told she had been completely off oxygen for 6 hours in her sleep. It hadn't affected her sats and she was doing well. 

When they did ward rounds, the consultant told me that Georgia could return to our local hospital the following day!  She was still on a drug for hypertension and needed to be weened off it, they knew that our local hospital would be able to do that.

From my previous experience at our local hospital, I was worried. 

Although I wanted nothing more than for Georgia to come home, she was safer here than anywhere else.  They had saved her life so many times.  What if her airway collapsed again? 

The next day, Georgia was to be transferred by ambulance over the water.  Closer to home.  I had so many emotions that day.  I was devastated to be leaving all these wonderful people.  I also felt exceptionally guilty for leaving the parents that I had made friends with. 

Mike was travelling over with Georgia in the ambulance, as he was the only one she would behave for!  I followed in my car. 

As we were leaving the ward, we had so many people to say goodbye to.  I cried the whole time.  It's not that I didn't want to leave, its because these people went through the hardest part of our lives with us.  It felt like I was taking Georgia away from the people that loved her as much as I do.

By the time we got to St Marys I had pulled myself together.  It was weird being back there.  It was like it had changed.  We had been through so much since being there last. 

It was only as I was leaving that evening that I realised.  It wasn't the place that had changed, it was me.  I have become who I am supposed to be.

Georgia has given me that.  I am now more patient.  I know that life is too short to waste it.  If Georgia can be so strong, then so can I.

Even though we were back on home ground, Georgia still had some battles to win.  She still had a feeding tube and we were trying to get her to take a bottle.  It was hard for her as she had lost the ability to suck.  She needed to though.  No food or drink ever passed her lips.  She constantly had a dry mouth, we used to have to change her tube and stick it back to her face.  We also had to swab her mouth to moisten it and put Vaseline on her lips to stop them drying out.

We were told she would never drink from a bottle after having lost the suckling.  Luckily that was a very stupid think to say to me.  I was then all encompassed with getting her to drink. 

Georgia would love to sit outside by the duck pond at the hospital.  She had been in hospital for 36 days, this was the first bit of sunlight she got.  I would sit there watching her with a ghost of a smile on my face.  She would squint up into the sun and smile. 

She appreciates the sun, the air, the trees, the clouds.  All the things we take for granted.

Rehab

Georgia was on the ventilator for 7 days.  When they took her off the second time, they decided to give her something called CPAP.  Basically, it is just another form of ventilation, it's just less invasive. 

This seemed to do the trick.  As it was pushing air into her lungs, it strengthened the bronchial tubes that were the problem before. 

Finally 3 days later, she came off CPAP and was breathing on her own.  She was still being given a small amount of oxygen through her nose, and she was still on morphine for the pain.  They wanted to send her back up to the Ocean Ward so the nurses there could try and ween her off both.  If it was stopped straight away then she would crash.

The day she was being sent back to the Ward was the day Rob came to visit her, after not seeing her for a week.  I had spent every moment with her, trying to make her smile or at least acknowledge I was there, I got no reaction.  She was still in her world of pain.

The moment she saw Rob, a small shadow of a smile passed her face.  I have never been so happy in my life.  She smiled, a small smile, but a smile!   Of course I was a bit miffed that after all my hard work it was Rob that caused it.

She went from strength to strength after that day.  I thought that finally we were on the road to recovery and could go home!  I was so pleased to be back on the Ocean Ward, with a smiling Georgia!

Then they started to reduce her morphine.  She had been on it so long, she had started to depend on it.  It was like my baby was in rehab.  The day they reduced it, it was only by a tiny amount.  She screamed for hours on end.  They finally sedated her in the evening, partly for me to have a break, mainly for her to get some sleep.

When she finally drifted off in my arms, I slowly lowered her into the cot and gingerly stepped away.  I know she was sedated but I was so scared she would wake up and scream again!  It was only as I got a few meters away that I exhaled.  I hadn't even realised I was holding my breath.

My whole body hurt.  Probably nothing compared to the withdrawal pain she had.  I was so mentally and physically exhausted at this point.  I had hit a wall.  There is always a moment when it all catches up, this was it.  I went back to the house and fell asleep instantly.

I hope it doesn't sound too heartless but, the next day, I didn't want to go back.  Not if it was going to be another day like the day before.  My feet felt like lead as I dragged myself back to the ward with a heavy heart.

I could hear her screaming before I even entered the ward.  On the plus side, all this screaming would strengthen her lungs! 

The only nurse she would be content with on the Ward was Mike.  She is a big softy when it comes to men!  So for most of the day, Mike carried her around with him, or pushed her in a pram while he was working. 

As soon as he went home the screaming started again.  Sedation for sleep was used again.  I went back to the house and felt the same way as the day before.

This became my groundhog day for 3 weeks.  I went, she screamed, I comforted, they sedated.  In between this, every now and then, a little shadow of Georgia's former self peeped through.  She would smile when I sang to her.  She still does that.

Angel Kisses

I have been thinking about my previous post all day.

The way it felt is so hard to describe.  I thought I had done it justice, but reading it back I realise there is so much I have left out.

It was so difficult when Georgia was at home and she kept having respiratory arrests, once she was in Southampton Hospital I felt relieved she was there. 

Again I was so naive. 

We just expect these people to be able to save our children.  It's like, if they are in hospital no harm can come to them.  That is so not true.  There is only so much they can do.

There were a couple of parents we became friendly with that this happened to.  It is so destroying to be faced with the fact that your child can not be saved.  How do you deal with that?  Even worse, how do you tell parents that you can't help?

This was one of the hardest days for us, mainly because we realised that the people we thought were super hero's actually were as baffled by Georgia as we were.

It is so scary to think that you could just lose them.  Just like that. I think, if I had realised this before I would have been even more terrified.

Her next surgery is going to be worse.  She will be aware this time.  Maybe it will make it easier if she is able to tell us how she feels.  Maybe it will make it worse if she can tell us how she feels.  Who knows?

All I know is, without the constant attention to detail and the hard work of the consultants and nurses, Georgia would not be with us today. 

Before Georgia was born I was a wimp.  I hated the sight of blood.  I was terrified when people were sick.  I can't even remember when I got over that.  So much has happened that I just dealt with it. 

We were not allowed to properly bath Georgia due to all the wires but we could bed bath her.  I would sit for hours with a a few little bits of cotton wool and warm water trying to get the dried blood off her puncture wounds.  She had so many, she looked like a little pin cushion. 

You know when you take off a plaster and you get left with that really irritating sticky stuff that just won't come off?  She was covered in that from head to toe.  Mainly around her mouth and nose where the ventilator had been kept in place.  I spent so long trying to get that off before one of the nurses gave me this wonderful remover that did it in seconds.  I didn't really use it much though.  Cleaning Georgia was about all I had to do.

Georgia's scars had begun to heal though.  She had (and still has) perfect little X's just below her chest where the drains were.  Josh says they look like someone has drawn kisses on her tummy.  I told him that's where the angels kissed her to keep her safe. 

There were so many little insignificant things that happened throughout our stay.  Each one of these things makes up the whole story. 

Thinking back to when Georgia was diagnosed, I was devastated.  I never realised it would be this hard, or that she would be this strong.  I don't think I thought for a second she would survive.  It's those angel kisses that did it!

I do hope her next surgery goes a bit better than the last.  Hopefully, one day, she might be able to go a full day without medication, or a full month without a chest infection! 

For now, we are just happy she is here.

The Pretenders

I still go to bed in my jogging bottoms.  I still keep a hairband around my wrist at night too.  It's just in case.

When Georgia was really ill, I had to be prepared to leave to go to the hospital at any time.  It's a habit I cant get out of.  I still have a bag packed for her, hanging up ready to go.

I always have enough petrol in my car to get to the hospital and back.  I always have £1.50 for the parking.

It will never go away, I am in a constantly alert, ready for anything.  I don't ever relax.  I am just a big bundle of nervous energy.  I wonder if I will ever chill out again!

Georgia laid in Intensive Care for 2 days not really seeing, or hearing.  She seemed to just be completely taken over by the pain she was in. 

I could do nothing but sit with her.  I couldn't even cuddle her as she still had so many wires. 

I knew she wasn't right.  The doctors told me that she would recover slowly and that they wanted her to go back up to the Ocean Ward. 
When it is your child, you just know.  She was still really poorly, I felt like no one was listening to me.  In fairness I understand why they didn't.  On paper she was fine.  But when I looked into her eyes, she was dying.

I went with her back up to the ward.  The nurse that was working was called Jess and we knew her very well.  She was to be Georgia's nurse for the day.  I told her my concerns.  As Jess had looked after Georgia before, she knew her and I trusted that she would know if something was wrong.  I left her in Jess' capable hand and went off for a break.

When I came back 2 hours later, Georgia had not moved.  Anyone that knows Georgia, would know that's not right.  She had not smiled since before her surgery either.  I know that no one would want to smile after heart surgery but Georgia smiled through her pain, usually. 

At 2am that morning Georgia stopped breathing.  Back in Intensive Care the Consultant was baffled as to why she was still not well.  All her statistics said she was ok.

Rob and I stayed with her until 4am then finally gave in and went to get some sleep. 

Ward rounds the next day were at 10am, we made sure we were there to hear the doctor's theories.  The consultant on that morning was Vanessa.  She had called in all of the Paediatric Consultants to come and have a look at Georgia. 

The bed was surrounded by 7 or 8 people and I just sat beside Georgia listening to them.  They discussed her for 10 minutes.  Vanessa then asked me what I thought.  I was so surprised that she wanted my opinion  I didn't really know what to say.  Being me, I just burst into tears and told them all she was not right.  There was no light left in her eyes.  It was as if she had given up.  All the fight had been taken from her.

The consultants all went off to talk and left Rob and I sitting looking at each other in fear.  What if they couldn't work out what was wrong?  What do we do then?

On top of this we had planned to travel back to the Island to visit Josh as we hadn't seen him for 2 weeks.  We had to make time for Josh too, as hard as it was to leave Georgia. 

Vanessa came over to tell us that they were going to investigate more by doing chest x-rays and a heart echo. 

I feel very indebted to Vanessa.  She had asked me my opinion, and listened to me.  She agreed that there was something wrong and was doing all she could to find out what it was.  She was aware we had planned to see Josh on this day too and told us to go. I really didn't want to leave Georgi but I really wanted to see Josh.  Honestly, I was looking forward to a normal day.  No hospital, for a while anyway.

So we kissed Georgia goodbye and walked out.  That dreaded elastic band trying to pull me back with every step.

We got into the car and started to drive to the ferry.  We were both crying. 

Playing in the car was 'I'll stand by you' by the Pretenders.  It will forever remind me of Rob, and how we both felt in that moment.  Afraid, sad, guilty for Georgia.  Excited and happy to see Josh.  United in our thoughts and feelings.

Vanessa phoned me as we got off the boat.  Georgia had stopped breathing again.  This time they couldn't pull her out of it so they had sedated her and put her back on the ventilator.  A chest X-ray showed that her lung had collapsed.

10 minutes later we were all smiles for our little boy.  For the moment we had to put Georgia to the back of our minds, as hard as that was. 

We took Josh to the beach.  Rob and I could be brilliant actors.

One year on.......

Today is the year anniversary of Georgia's heart surgery.

What we have been through could have torn us apart.  Luckily it has just made us stronger.

I remember telling someone that Georgia's story so far has been like going through hell.  Quite honestly, if I had to go through hell, there is no other person better to go through it with than Rob.

Both our children are our world.  I am so proud of both of them.  Josh has been a little warrior, he has had to put up with all the trips to the hospitals, he has seen so much he should never have had to.

I can't even explain how brave and determined Georgia is.  She has amazed me with everything she has achieved.

I didn't really want to write a blog today.  I have written and rewritten this page so many times.  I just don't know how to put how I have felt today into words. 

All day I have been clock watching, thinking what we were doing at this time on that day.  I feel like I have relived it today. 

Maybe I need to start to let it go.  This blog has helped in someways, but made it worse in others.  It makes me think about stuff that I shouldn't really keep going over.  There is nothing I can do to change the past.  There is nothing I can do to make her better.  It is what it is.

I have started doing Physio on Georgia.  The respiratory team think it will help her breathing.  So far the only thing it has done is make her breathing worse and make her really stressed.  They said this would happen though.  It should start to get better soon.

I have to hold a mask over her face for a certain amount of time.  That doesn't sound so bad does it?  Well then imagine how awful it is with a girl who was prone to gasping for air.  She is petrified of this mask, to her it's like I am trying to suffocate her.  She arches her back while she is screaming and looks me right in the eye.  Its horrid.  I am also worried about the amount of stress this puts on her heart.  She has, after all, still got a heart condition.

So life goes on, much the same as it always has.  It's normal to us now. 

Sometimes I wish we could just have the same insignificant worries as everyone else.  I would not change Georgia for the world though. 

In the year since the surgery she has learnt so much.  She walks, she drinks, she eats, she babbles and she smiles.  All the time.

Shooting Stars

2 days after surgery we were asked if we wanted to be there when they lightened her sedation and took her off the ventilator.

I really didnt want to be there but if something went wrong and she was waking up and in pain I would have never forgiven myself.  We stayed.

Georgia was very fidgety even under sedation.  She had enormous amounts of morphine to keep her unconsious and out of pain but she was fighting it.  It really freaked me out to start with.  She would be really still then all of a sudden have a little wriggle about and try and lift her arms!  So when they told me they were taking the sedation down, I knew it wouldnt be long before she was awake.

There was 2 nurses and a PICU consultant doing the removal of the ventilator.  We were pre warned that she was likely not to do very well to start with due to her breathing problems.  I felt like I was in the way a bit, so I shifted round her cot so I was by her feet.  The downside of being in that position was I could see the monitor with all the stats on it. 

As Georgi started to open her eyes I went all hot.  Pure panic was starting to set in.  She was so sweaty and pale she looked like a little china doll.  She started to fight then.

She was still not totally alert, but alert enough to know there was a tube down her throat and she didn't like it.  She started to reach for it so the Consultant removed it and put an oxygen mask by her face. 

I stood there feeling totally helpless.  I watched as her sats went from 99 right down to 40 then back up to 70.  I am not really sure how my legs supported me at that point. 

Then that was it.  That easy.  The nurse told us she was stable and they would be keeping an eye on her very closely until she was fully awake. 

I dont know what I expected but when I looked over the cot at her she just stared at me.  No facial expression at all.  I think I wanted the famous smile.  She looked so sorry for herself, it was as if she were saying 'help me, I am in pain'.  I just sat next to her and held her hand. 

I know she was right there in front of me but I felt like I was grieving for her.  Maybe I was grieving for the Georgia I wanted to see again, sunny happy little baby.  I stayed with her all day, just crying silently. 

In PICU, all the parents understand.  They are all right there with you, they live your sadness, just as you live theirs.  You also live their happiness, when it happens.

At this point I missed Georgia.  I missed Josh too, he is the kind of boy that can brighten up any situation, I think he gets it from his dad.  I so wanted to come home and see him but I was so scared that something would happen to Georgia and I wouldnt be there with her.  It was so hard.

That night they covered Georgia's cot with a sheet and put a little stars light show on for her.  It was so beautiful it made me cry to watch her pained eyes following the stars as they moved.  She no longer cried, she just whimpered like a wounded animal.  I wish it had been me.

Sleeping Beauty

Georgia had 2 chest drains, 2 pace wires, a catheter, an arterial line, ECG wires and patches and a sats monitor on her foot.  She also had her ventilator tube in the side of her mouth.

I remember wondering why she had a hole in the side of her neck.  It was only small, but a hole nonetheless.  The nurse told me it was where they had the arterial line in for surgery, they put it in her arm afterwards. 

Georgia still has that scar of the hole on her neck now.

After we had spent a bit of time with her we realised that it seemed a little pointless.  Georgia was not going to be woken up and taken off the ventilator for a couple of days.  Rob disappeared off to watch the World Cup.  I decided to stay with her and hold her little hand.  It was impossible to get any closer to her.

Rob's mum was taking over Joshie watch from my mum that night, so on her way home my mum was going to drop into the hospital to see us and bring with her some, much needed, clean clothes.

It was shocking for me to see Georgia after her op.  Not long afterwards I no longer saw the wires, just Georgi.
I didn't even think about how it would be for my mum, to me it was normal.

I sat in my car, waiting for her.  All day I had managed to be really brave and not cry.  This is a huge accomplishment for me.  I am the type that cries at Eastenders! 
I was really proud of myself for holding it together, not only for myself, but for Rob too. 
Sitting on my own though, I started to run it all through my mind.  It hit me then. I was crying so much I couldn't catch my breath. 

I called Marc (my step dad) and poured my heart out.  Bless him, he cried with me. 

When mum and I finally walked back into PICU, her reaction must have been what I had looked like.  She looked horrified.  Sorry for not warning you before we went in mum!
A few days later my Dad came to visit her too.  It must have been awful for him.  He had only seen Georgia a few times in her short little life, for him to see her in that situation must have been petrifying.

After my mum left, I sat and watched Georgi for ages.  On one hand I was so scared of what was to come. On the other hand, I was so proud of her at that moment I thought my heart would burst.  She is so beautiful even asleep. 

All I wanted to see was that Georgia smile.

when I'm feeling blue

I still have good and bad days.

Today is a bad day.  I don't often write when I am feeling bad.  I think I should start too, just so you can understand the different emotions we still have.

I don't understand people very well.  Why have so much bad feeling when life is so short.

I consider myself quite an easy going person.  I don't hold grudges, I don't see the point.  If you love someone, you love them completely.  Warts and all.

I miss my family being together.  It has been years now since we have all been able to be in the same room, without fighting.  Things have been said that have hurt so much that we will never be able to have the same relationship again. 

Why can't we just all get along?  Perhaps I am resigned to the fact that people treat me how they like and I just forgive them.  I don't know.

Georgia has been a bit off for the last few days.  Her breathing has got really bad and she seems to have lost her sense of balance.  She has fallen over so many times her face is covered in bruises.

I was watching her sleep last night.  Her blocked nose makes it really hard for her to sleep through the night.  It's like she has a constant cold.  Is this what she has in store for the rest of her life?

I do always try to look forward but sometimes the picture I have in my head is not what I want to see.

So she will never be a long distance runner?  So what? 
Will she be able to keep up with her friends?  Or her brother?  Probably not.  We will have to watch her struggle constantly. 

I can't help her, literally.  She wont let me.  I try to help her walk so she wont keep falling over but it annoys her.  I know this is how it will be.  She will push herself to extremes, just to feel normal.

I know there are other people far worse off, but when it is your child it is all you see.

Georgia's condition is all encompassing to me.  I have fought so hard for it not to define me, but it does.

But I won't let it define her.  She probably won't either.

I hope we can get some answers soon as to why she has this trouble with her breathing.  Sometimes it's nice to have an explanation.

Explanations are annoying me too.  Why did this happen to her?  Josh is perfectly happy and healthy with only the common cold springing up now and then.
I don't mean I want him to be ill, it's just why one and not the other?  This makes me think it is something I did.  I was the incubator for 9 months so where did I go wrong? 

The doctors told us that it just happens.  No explanation, it is just something that happens.  That's not good enough for me because it makes me feel like it must have been something I did.  It doesn't matter how many people tell me it wasn't my fault.  It will always be there in the back of my mind.

All I can do is carry on trying to make her life as happy as possible.

Not what I want to hear

Some people remember times and places by a smell or taste.  I am transported back in time by sounds.

There is a high pitched beeping as you walk into Southampton Hospital.  It sounds like the monitors that Georgia had attached to her in PICU.  Whenever I watch any programs about hospitals and I hear that noise, I can see and feel it as though it was yesterday. The smell of the hospital, like antiseptic.  The heat of the wards to keep the babies warm.  The murmur of voices, not being too loud so as not to wake the little ones.

I still can't listen to certain music.  The song that makes me cry every time I hear it was played repeatedly in my car as I drove to and from the hospitals.  'Keep holding on' is very fitting though!

There is a song by Mumford and Sons, it is like the song was written for Georgia.

It is a year this Sunday since we made the trip over with Georgia for her surgery.  I can't believe how fast the time has gone.

Sometimes I wonder why people don't just know what we have been through.  It has been such a life changing experience that I just assume that I look like the mum of a cardiac baby.  I know, that sounds so bizarre.  If you have ever lost someone you love, you tend to wonder why the world has not stopped to grieve with you.  Like the whole world should be as devastated as you.  It was like that with Georgia.  When she was really ill I would watch people and resent them for being so happy when she was fighting for her life.

Whilst Georgia was in Theatre, Rob and I sat in the parents room on the Ocean Ward. 

We waited for 4 hours for news.  In the meantime we needed something to take our minds off it, which turned out to be extremely difficult. 
Rob read a newspaper 20 times, cover to cover.  He would have gone to buy another one but was scared he would miss the surgeon.
I sat and watched 'Friends'.  I have seen them so many times that I could watch them without really watching them!

Dr Viola finally came to see us at about 2pm.  He told us the surgery had gone well and that PICU were just getting her settled, then we could see her.  He then told us that she was a very rare case as her heart is completely back to front and upside down.  They had managed to patch up the ventricles and atrial septum's with part of the outer sack that the heart sits in.  The bad news was that her valves were like nothing he had ever seen before.  They were not the usual AVSD valves, in actual fact they were unrecognisable as valves.  They had put a couple of stitches in to stop the leaks but that would be a short term solution.  She will have to have surgery again.  They have no idea when.

Thinking about it now that was a devastating turn of events.  We were so focused on this surgery being the end of it all.  We naively thought that she would have this surgery then be fine.  So stupid. This will go on for the rest of her life.  She will never be able to do what other children can.  But I bet she will try!

At the time though we were just so relieved she made it through the surgery.  We didn't really think about the future and what this would mean.

One of the nurses went with us to PICU.  It sounds silly but as soon as you walk in you can breathe better, guess it's the amount of oxygen they have floating about in there!  It's so light and fresh, very quiet too apart from the beeping every now and then. 

Georgia was right at the end of the room, exactly the space she had before. 

Even though you think you have prepared yourself for it, it is still the most shocking sight.
Wires and tubes is all you can see.  She was covered by a huge blanket with warm air being blown under it.  She was ice cold and so still.  It was as if she had not survived.  The ventilator was making her chest rise and fall but other than that she was not Georgia.  She didn't return to being Georgia for a long time either.

I realised how much time I had spent at the hospital when it turned into a sort of Groundhog Day.  There was always a man asleep with his face on his laptop in the coffee shop at 7am.  There was always a really skinny woman and a man with no legs out the front smoking.  The surgeons would come for lunch at 12 in their scrubs waiting in line.  The smell of fish wafted down the corridors at 1pm, hospital dinners! 
The best time of day in the hospital was between 7 and 8 pm.  All the visitors had gone and only the regulars remained!  We all knew each other, even if it was just a nod of hello in passing.  It was so quiet that after the emotional days we could sit and drink a cup of tea in silence. 

Sometimes nothing needs to be said.

Surgery. Heart stopping.

We bathed Georgia in her MSRA Gel on the morning of 25th June 2010.  I was still quite sceptical about her actually going down for surgery.

Rob and I played with her for a while. She had been nil-by-mouth for a few hours, so we were trying to keep her entertained so she wouldn't notice.  She didn't really care, I suppose she had been fed every 3 hours for 6 months so it was nice for her tummy to have a rest!

At 8.30 she fell asleep draped over my shoulder. 

The hospital porters turned up with another gurney!  I realised then that this was very real.  I looked at Rob and saw my terror reflected in his eyes.  This was it, our smiley little baby girl was going to have someone stop her heart.  Still when I say it I can feel my breath catch. 

Because she was sleeping I was able to carry her down to the theatre waiting room.  A lovely nurse called Sarah came with us from the ward.  Apparently, even if you are not using the gurney it has to come with you, I felt like a bit of a prat following 2 hospital porters wheeling it down the corridors! 

Georgia had to be dressed in a surgical gown.  We managed to get it on her without waking her.  Who would have thought they make gowns that small.

Rob, Georgia and I sat down to wait for Sarah to sign us in with reception.  The head of Surgery, Dr Khan came out to say that they were just prepping the room and then they would take her down.  He asked which of us would be taking her.  I said it would be me as I was holding her asleep.
As soon as he walked away my nerves kicked in.  The thoughts I had were terrifying.  They were about to open her chest, stop her heart and put her on a bypass machine.  They would then try their hardest to fix her as quickly as possible.  But she is so tiny, how can they possibly do that?????
I started to feel dizzy then, I had to hand her over to Rob so I could stand up.  I couldn't sit still.  As I was standing there hopping from foot to foot like an absolute idiot, they came for her.  What a terrible thing to admit, I panicked and couldn't take her.  Rob took her for me. 
She was still fast asleep on Rob's shoulder, dressed in her little gown.
I stood at the end of the corridor and watched her little head on Rob's shoulder until they disappeared into the room. 
My heart was breaking.  I couldn't cry, I knew that what Rob was doing was going to be so hard for him, the last thing he needed was to have to comfort me too.  I stood at the end of that corridor watching that door with Sarah holding my hand until Rob reappeared.  He was fine until he looked me in the eye, then he fell apart.

Karma

Before Georgia was born I never thought I could love another child as much as I loved Josh.  I did find it quite hard to bond with Georgia, I felt a bit more like a nurse than a mum for a while.  I also tried very hard to not let myself get too close to her in case of the worst happening. That was impossible as she is just wonderful.

I have noticed in the last few weeks the affect that this journey has had on Josh.  He has been attention seeking, in the worst possible way.  He has been hitting us all, pinching, biting and throwing really horrendous tantrums.  Firstly, I put it down to him being 3 and acting out.  I have been looking more at myself in the last week or so and realised that it's me, all me.  I have been so 'all about Georgia' that I was starting to overlook Josh.  When people ask me how the kids are, I would say 'Georgia is doing really well'.  How awful, poor Josh. 

I am glad I have recognised it now before it is too late.  Josh and I have started to have 'special time' for an hour everyday.  This worked immediately.  He has turned back into the lovely boy he was before. 

I was worried how this would affect Georgia, as I would not be spending so much time with her.  It has done her the world of good, she has become more independent and respects Josh (and his space) much more.

Does every parent have these problems?  I seem to focus solely on what is happening at that moment and am completely blind to everything else going around me.  Josh was shouting out for time and I was, not only ignoring it but shouting back at him.  It's that bloody guilt thing again!

Sometimes I need to remember the important things.  I have managed to deal with all that Georgia has had to endure but it has been at a very high price, now I need to right the wrongs.

Rob and I have just managed to get our relationship back to some normality.  We went from one crisis to another just clinging on by our fingertips.  What we have all been through has made us stronger in the long run.

I think Georgia has been punished for all my mistakes in life.  I have done some pretty awful stuff in my time and definitely deserved some sort of karma but if I had known it would be my children that would pay the price perhaps I would have thought twice.  Thoughts like this run through my head from time to time but I can't do anything about it now, it's in the past and done with.  I can't change it.

Home on the Ocean Ward

The night before Georgia's surgery had been booked, a tiny baby was admitted to the Ocean Ward.  This tiny little mite was so ill that they had put an oxygen tent over her head to keep her sats up.  She needed immediate surgery and it was going to be quite complex.  The surgeons decided it was crucial for her to have surgery the next day and so moved our surgery to a different day.

I was pleased in a way.  They obviously thought Georgia was not too much at risk. On the other hand, I just wanted to get it over with.  Her surgery was then booked for the following Wednesday. 
So another week on the Ocean Ward. We became good friends with the nurses, doctors and other parents.  There was a couple who were also staying in Heartbeat House with us who we got on well with.  It was great for Rob as the World Cup was on and he had someone to disappear with to the parents room to watch it, without feeling too guilty!

I have said before that heart children do often look well, most of the time you wouldn't realise there was anything wrong at all.  This was proved wrong for us though when we met a couple who had twins.  One twin had a heart defect and the other was fine.  These little girls were 5 years old and the difference between them was amazing.  They were identical but to look at them you would have thought one was a couple of years older than the other.  The 'Heart' twin was so tiny and fragile compared to her boisterous sister!  Perhaps that may have been the difference in their personalities as well, I don't know really.

The Ocean Ward has such a peaceful aura to it.  Even though at any given time every bed space is full, it still seems quiet and serene.  When I was allowed to take Georgia off her monitors to walk around we were often nearly run down in the corridors by children in little cars zooming about everywhere!  The play specialists they have there are great.  These children have faced the worst but are still all smiling and giggling with the staff.  I remember one doctor had a little girl on his lap, she had obviously just had surgery as they were not picking her up under the arms, he was using his mobile to ring the desk phone as every time it rang she went purple with laughter! These small things make it so much easier to live on the ward.
When an emergency happened it affected us all.  You become so involved in everyone around you when you are in that sort of environment, I think I mainly did that so I didn't have to focus on our situation too much!

One day there was a 'red light' situation.  As soon as the alarm sounded nurses came running from every room and doctors from every station, they surrounded the cot for what seemed like an eternity then moved the child back to intensive care where they could be monitored more closely.  It took nearly half an hour for, not only the patients, but the nurses and doctors to go back to the normal routine.  It was so shocking and unexpected for us that we were stunned at how they just took it in their stride and remained calm.  Again, they then made us feel better and became the support we needed.  How do the Nurses manage to be so supportive and upbeat after all they see and do?  I could never imagine the pressure they feel.

I wrote in one of my earlier blogs about me being judgemental when I really didn't know the facts and on the Ocean Ward I was guilty of this, we were always there and couldn't understand how the parents of the other babies were not there constantly.  I understand now, it is a hard environment to be in and especially when your baby has been there for months!  I would like to publicly apologise to all parents that I judged, even though I never judged to your face because I am a coward!

The following Tuesday we were told that Georgia's heart surgery had been moved to Friday.  Frustrating is not the word!  I was devastated.  Plus I had been washing Georgi in her MRSA gel for over 2 weeks now, she was more than ready for surgery!  So you can imagine on the Thursday evening I was just waiting for someone to come and tell me her surgery had been cancelled again, the anaesthetist came and told us all the risks and got us to sign the consent forms.  Even when we went back to Heartbeat House later that night I was still waiting for the phone call for cancellation.  I fell asleep not worrying, I thought that it wouldn't happen as it had been cancelled so much before.

At 6am the ward called me to say they were taking her to theatre at 9am.  Have you ever had that feeling when you are climbing the stairs and you miss a step, that lurching fear in your stomach?  That's what it felt like.

Hearts and Breathing, anything else?

Next time you go into a McDonalds, look for the donation tins.  They have them on the drive-thru too.  The donations go to Wessex Heartbeat which is a charity that run a house opposite Southampton hospital.  This house was to be our haven for the next month after arriving on the ward.

Georgia was moved to the Nursery to be watched more closely for her 'episodes'.  As there are 4 cots in the nursery, all quite close together there really is no room for parents to sleep at the bedside.  I think it is also in case of any emergencies the staff can get to the beds quickly and easily.  We were told that I could stay on the ward but it seemed silly if I couldn't stay next to her so we stayed in a hotel for the first couple of nights, returning the next morning as soon as we could. 

The second day of being on the Ocean Ward was the first time I had ever heard of a Cardiac Catheter.  The respiratory team had been up to see Georgia and decided that the best thing to do to get to the root of her problem with breathing was to carry out a bronchoscopy, this involved putting her under general anesthetic then inserting a small camera down her throat to enable them to what was going on.  While she was there the cardiac team thought this was an ideal moment to do a cardiac catheter, this means they would pass a tube into the top of Georgia's thighs, near the groin, then feed it into one of the main arteries leading to the heart, it would then be fed right up the body to the left and right sides to give a more detailed view of the heart via x-ray.  One of the doctors told me it was like giving them a road map of her problems. 
This was all fine but we were then told that they were worried that Georgia's breathing episodes may have put more strain on her so they may take her straight down for surgery following this procedure.  Well that was definitely not what I expected to hear!  I didn't think they would do her surgery until the breathing problem had been solved so I was terrified.
Being in a big hospital like that you would think you would have lots of things to do with your time, nope.  Rob and I needed to find somewhere to stay that evening so asked the ward sister about Heartbeat House.  We were referred over there just as Georgia was to be taken down for her procedures so we put it off until she was under anesthetic. 
2 Hospital porters turned up with a gurney, this made me laugh, how would Georgi stay on a gurney??? Then I realised they wanted me to get on it with her!  We travelled in style to the Cardiac Cath waiting room.  To this day I could still not tell you where that is, it is all such a blur.  I was so nervous holding her as we waited for them to prep the room. Our little baby being so oblivious to what was about to happen.

Once we were taken into the theatre and I had to hand her over to the doctor, I could feel my pulse racing, this was not how it was supposed to happen, we were supposed to be able to control when and what happened to our daughter, but there she was surrounded by all these unfamiliar people, I began to panic.  As they put the mask over her face to put her under I just wanted to run away, I actually remember turning to Rob and saying 'I don't want to be here anymore'.  The doctor turned to me and said 'say goodbye now, she is going to sleep, do you want to give her a kiss?'  I just couldn't, watching her slowly losing consciousness was enough for me.
We walked in a daze towards the lift to go and get our room at Heartbeat House, I couldn't stop crying, I felt like I would never see her smiley little face again. 
It's strange that the main thing I remember about that moment was another couple getting in the lift and the woman was crying as well as me, we locked eyes and gave each other watery smiles.  When we got out on the ground floor, in true Rob style, he said it was the most emotional lift he has ever been in.  Idiot.
The whole way through this awful experience we had a lovely nurse from the Ocean Ward with us, she was the voice of reason and kept me calm, most of the time!  Thinking back, she had probably done that journey with thousands of parents and children over the years but still remains the support for us all.

Heartbeat House was amazing, it is lots of rooms with a communal kitchen, garden and bathrooms.  The lovely ladies running it showed us to our room and we fell asleep from pure exhaustion whilst talking about Georgia and Josh.

A few hours later the Ward called us to say Georgia was on her way back up to them, the Cardiac team had decided it was not necessary for the surgery to be done today.  Relief?  No not at all.  This means we would have to do this again.

On getting back to the ward she had just arrived all croaky and sore.  She grizzled at us for an hour or so until Rob got her laughing again!  The respiratory team came first lead by Dr Roberts, who we will be seeing for a very long time, to tell us they had diagnosed her with Bronchomalacia.  It means that the cartilage in the walls of the bronchial tubes are weak and prone to collapse.  Therefore when Georgia was crying her airways were closing.  Finally we know why, its been so long that I thought it was just what would happen for the rest of her life!  We found out that the cartilage usually gets tougher itself in time.  The bad side of this was that it would put a lot of pressure on her after her heart surgery, especially when she would be taken off the ventilator.  The ventilator in essence breathes for her so when you take that away she is more likely to have a collapse.

This was the Tuesday, surgery was booked for the Friday.

Where we need to be

By this point Georgia was having bad chest pains from her heart which made her scream, which in turn stopped her breathing.  Eventually she was admitted to St Marys until her surgery as she needed oxygen constantly. 

How do you stop a baby crying when they are in pain?  I tried to keep her calm all the time but it was just not possible.

As wonderful as St Marys staff were, I think they underestimated Georgia's condition.  I felt like I was trying to prove how ill she was all the time.  She was put in her own room by the entrance of the hospital, which happened to be really far away from the nurses station, so when I had to leave to put Josh to bed I was terrified she would cry and stop breathing and no one would know.  She did have a sats monitor on her foot which alarmed when it didn't pick up a trace but a couple of times when I arrived back it was turned off! I hated leaving but I had too. 
St Marys was a lonely place for me too.  Georgia still slept most of the day so I just sat next to her and watched her all day.  Sometimes I wondered if I would be better off having her at home.  She stopped breathing at least 3 times a day and St Marys saw this as a normal occurrence for a heart baby.  I agreed as I had nothing to measure it against.

One particular day she was so sick that I ran out of clothes for her, I decided to nip to the shops to buy her some more baby gro's as she had nothing to wear.  As I left the hospital my car exploded! The fuel line had gone, it was the last thing I needed.  I got it to the Ford garage, and left it with them.  On hearing the story, one of the girls that worked in the rental part offered me a rental until my car was fixed for half price! You see there are some great people out there!
Realising that I need my car to be trustworthy I went back to the garage and enquired about getting a car on HP.  I needed to be safe in the knowledge I could get Georgia to and from the hospital with no problems.  3 weeks later I had a trustworthy Ford car, which would see us through the journeys to Southampton.

On the Saurday before Georgia's surgery she was still an inpatient at St Marys.  I asked them what time the Ambulance would be transferring her over on the following day.  I was told then, and only then, that she was not being transferred so I would have to take her.  So basically I would have to get on an hours ferry journey across the Solent with a baby that stopped breathing frequently and required oxygen?????? I was furious and threw a tantrum, those of you who have never seen a tantrum of mine before it is a bit like the incredible hulk!   The Ward Sister went to call to see if we could have an ambulance, she returned 5 mins later to tell me that there were none available because they were all at the Isle Of Wight Festival.  WHAT????? So every paediatric ambulance was at the Festival and were not able to transfer a small baby over? I don't think so.  Can you imagine what it will be like if they close the Ocean Ward?  Not only would we have taken Georgia on that hours ferry journey, it would also have been the car trip to the ends of the earth.  People just didn't listen at all.

So on the Sunday morning Rob and I picked her up from St Marys and armed with a tank of oxygen we boarded the ferry.  As expected she stopped breathing half way across the Solent, to make matters worse it was really busy.  As I have said before, people are so quick to judge, we were stared at like we were mad.  Can you imagine holding your child in your arms when she is blue and not breathing, while you are desperately trying to get an oxygen mask on her?  To the ferry companies credit, one of the staff came over to help.

One thing I have forgotten to mention is that Georgia sweated, constantly.  She was aways clammy.  We bathed her, like Josh, every night but by morning her hair and skin was greasy, this is a heart thing.  It's like the equivalent of me or you running everywhere, but her heart did it even when she slept.  That armed with her continuous cough made sleeping for a long time hard for her so she tended to cat nap.  Good for her, but not so good for us when we had to be up every 3 hours to feed her anyway.  Every feed took at least half an hour too, then sometimes the meds clashed in between feeds so we would only get an hours sleep at the most.

On arrival at Southampton Hospital I could have literally skipped into the Ward, I was so happy we were finally there and that someone was going to do something for her.  The nurse that was working on the reception desk was one that we knew very well from our previous stay, as we got to her I lumped this huge tank of oxygen on to the desk.  She looked at me confused asking why I had it and I replied that it was the only way to get Georgia there safe.
She took us into the ward to Georgia's bed space as I was explaining her breathing.  I got the impression that she was doubting the seriousness of it as St Marys had brushed over it.  Anyway she said if Georgia had one of her 'episodes' then to ring the nurses bell.

We got settled in and packed all of Georgia's things in her little cupboard, saying hello to all the nurses and other mums and dad's. 
Suddenly Georgia started to scream and started going blue.  We pressed the nurses bell and within seconds Georgia was taken from my arms put on oxygen, there were at least 8 nurses and 3 doctors surrounding her.  I knew it was bad.  They reacted exactly how I thought they would, they tried her with a nebuliser but that didn't work either.  The Surgeon came to see us shortly afterwards and advised us that due to the breathing problems they would want to cancel the surgery the following day, they were not happy to operate until they found out what was causing the respiratory arrests.
We were gutted, after all this hard work and time of watching her struggle, now we would have to wait longer.  I understood why they couldn't do it but I was so fed up of waiting.

Poor Georgia was moved to the nursery so they could keep a close eye on her, this meant we couldn't sleep at her bedside, again she was on her own, but in the best possible place with the best possible people.  Now we just had to wait for the respiratory team to look her over and reschedule surgery. 

Once I got her to sleep that night and lowered her slowly into her hospital cot I breathed out, I felt like I had not taken a breath in so long.  I felt safe now.  I knew she was ill but just looking around me on that ward made it all better.  To have nurses and doctors who know exactly what to do was such a relief.  I knew they loved each and every little life that was under their care.

It's not all bad!

After reading my last couple of posts I have realised that I haven't added any of the good stuff.  It was hard going through it but we had great support.

Rob is the most wonderful man I have ever known.  He can make mole hills out of mountains, he tends to see when I am freaking out and calm me down instantly, mainly by taking the piss!
He is the best dad.  I didn't have my dad in my life when I was young and therefore never really knew how a dad could be.  Rob's dad died when he was in his early teens so Rob had experience of what being a good dad was, and he does it brilliantly.  Our children adore him, Georgi smiles as soon as he walks into a room and Josh jumps all over him!
I cant tell you how much I love him, it's hard to put that amount of love into words. 
He is the only man I know that can sit and eat a pack of 12 minced pies with 4 pints of milk and have no consequences, apart from little puffs of Christmas the next day (his words, not mine).  He is also the only man that can be as rude to my mum as he is to me and get away with it.  They lived together when I was in hospital with Georgi, so now they call each other Roomies.

If I ever have a problem, I call my mum.  I speak to her every day.  She is another person I could not live without.  So it's a good thing she gets on well with Rob! 
When Georgia was ill I never showed anyone how hard I truly found it apart from her, she is and always will be my support, I sometimes thought I was leaning on her a bit too much.  I would phone her in tears, but bless her, I know she was thinking that being miles away she couldn't help, but she did, just by listening.  When I was in labour with Georgi mum nipped out of the room to phone someone just as I needed to push!  We had to get the midwife to track her down while I was trying to stop pushing!  Don't worry though, she didn't miss it. 
That is the thing about my mum, she never misses it, ever.  She was there when Josh was born, she was there when we got married, she was there when Georgia came into the world and she was there when Georgia nearly left it again.
The other thing you should know about my mum is she is a complete numpty.  Her texting ability is second to none, she blames it on having 'fat fingers and a touch screen phone', I blame it on her numptiness.  She makes me laugh, especially when she texts me saying she 'has pissed my blog all round the office'...........'PASSED, I MEAN PASSED'
When I told my Mum and Marc about Georgia's condition they were devastated and have done everything they possibly could to support us.

Rob's mum has been wonderful too.  She works in Southampton so when Georgia was on the Ocean Ward she would come straight from work to keep me company.  Some Saturdays she went over there to give me a day off to see Josh and Rob.  She spends every weekend with us now, which I enjoy as she was there through the good and the bad, it is good to talk to her about the hospital bit. 

Georgia is a lucky girl to have all these wonderful people in her life.

How am I supposed to breathe with no air?

I still have moments of pure panic, I had one this morning in fact when I read a blog from the Island defending the closure of the Ocean Ward.  Many people have argued the case but it was the first time I had read the defence saying 'if this ward is closed then many heart children from the island will die'. 

When Georgia was diagnosed right up until her heart surgery we were waiting.  Waiting for the surgery or waiting for her to die.  I know it sounds dramatic but being in that position, it was just how we felt.  Since her surgery I have felt slightly more secure but when I think about it too much she is still really ill and there is every chance she could die.  I always get my head into the worst case scenario, it's kind of a self preservation thing, if the worst happens I am ready but if it's good news then I am overjoyed.  Saying that, are you ever ready to lose a child?  Anyway reading this article my stomach lurched, if they move this ward and something happened like before would we have time to get her miles away to a specialist hospital?  Southampton is far enough and the journey there with a poorly child is petrifying.

So in the middle of May, almost a year to the day, Georgia started to have really bad breathing problems.  Every time we gave her a feed her breathing got really laboured and her chest rattled, normally this would be solved by her vomiting but this was not working anymore. 

On top of Georgia starting to get really ill we had really bad financial difficulties and were not able to keep up with our bills and mortgage, safe to say we were in hell.

The phone call for the surgery came 2 weeks after her bad breathing began, they had booked her in for the 13th June so we had to be there the day before to get her prepped.  This was weird news, although we were pleased it terrified us both.  We were also a bit annoyed as her surgery had been booked for the weekend of the Isle Of Wight Festival, not that we wanted to go, the ferry would be packed out, full of muddy hippies!

A week before she was booked in for surgery I had been up all night with her.  Georgia's breathing was so bad that I could hear it through the baby monitor.  I stayed in her room all night watching her little chest rise and fall, listening to her rattling breathing.  Honestly i was waiting for it to stop, by this point I thought the poor girl was struggling so much that she deserved a break.  Sitting in her room that night is one of the only times I regretted our decision to continue the pregnancy, I know we have no right to play god or not let her fight for life but I never realised how hard she would have to fight. 

At 5am she started to cry, any mother knows the difference between the moany cry and the pain cry, this was a pain cry.  I had never heard anything so awful, she was in pain but was too tired to put the effort in, at this point I called the hospital for advice.  The nurse I spoke to said to take her up to the ward if I was worried, after I hung up the phone Georgia went back to sleep in my arms, I didn't want to wake her so I thought I would stay at home until she woke up and see how she was then.   Ten minutes later she woke up crying again, this time I knew something was wrong and called 999.   While I was on the phone to them with Georgia still in my arms she went limp, I looked down and she had gone blue and her eyes had rolled back into her head.  I remember saying to the emergency services 'where is the bloody ambulance?' she replied by saying 'it's on it's way' and i shouted 'i find that hard to believe, we are a small island, i should hear sirens by now!'   Poor woman, I feel bad now!  On arrival, as ever, the paramedics were wonderful.  I had placed Georgia on the floor and tilted her neck to open her airway, they swooped in and took her off to the ambulance for some oxygen, still unconscious.  Stupid me just stood there.  I didn't know what to do.  One of the paramedics came back in he suggested I follow in my car.  Dumbstruck I asked if I needed to take anything for Georgia, I didn't even know if she was still alive.  She was, she had gone into respiratory arrest.  Our local hospital put it down to her heart being to stressed. 

The surgery couldn't come quick enough.

Stares and Smiles

So life goes on, the day to day care for Georgia was getting easier once we were used to it.  The vomiting started becoming normal to us.

One struggle I had, which I really didn't think would be a problem, was her medication and milk.  I had to get repeat prescriptions from her GP for both.  The problem started the moment I put the first prescription in, we had a phone call from our doctor asking us what the strength of the medication should be! If he asked me that now I could reel them off easily but being new to the whole thing I didn't have a clue, unfortunately neither did he.  After a lot of calling community nurses and wards I finally found out the dilution of each individual medicine (mgs to mls) and called our doctor back with the info.  He then advised me that the strength I was requesting is only available to inpatients at the hospital therefore I would be given a more diluted version so the dosage would change.  Being a newbie to all this I just agreed with him and said I would just read the bottles when I picked them up, after all he is the health professional not me.
The problem started there, on picking up the meds he had given us 5 times the amount Georgia was used to taking, with a vomiting child you try to keep the amount you put into their tummy to a minimum.  Also the milk he had prescribed was in drip bags, bloody drip bags! 500mls of milk that only had a shelf life of 24 hours (and even that was pushing it) so we were wasting so much of the stuff, not to mention the trouble we had if we ever went out anywhere, having to carry all the drip bags with us. I don't know if you have ever tried to open a drip bag but it is really hard, especially when its 2am and you can hardly function.
Anyway this was the beginning of my long hard battle against my GP, I saw him over 8 times in a month to request these meds to be sorted, it finally took for Southampton to phone him and give him the details for them to be changed.  In between all of this Georgia had been in and out of St Marys with problems that the meds brought with them, as there was so much of them she often vomited them then would puff up like a little blowfish with water retention. 

I probably should mention that Georgia seems to get a chest infection every 2 weeks and has been on antibiotics for most of her life too, this was another reason we were in hospital a lot.  It seems strange that it became my normal life.  I remember calling 999 and being really calm, driving up to the hospital with her at 3am and being pleased that it was that early so there was no traffic! The amount of hours I sat in the hospital with her while she was being poked and prodded, the blood tests, the urine tests, the x rays of her chest and all the while she was smiling!

Rob and I pretty much never went anywhere in case of any problem with Georgia in the first month she was home but it was so unfair on Josh so we decided to risk it and go out for the day.  Looking back now I am horrified we chose the most deserted park on the other side of the island to the hospital, and to top it off we both forgot to take our mobiles! Idiots!  That said though, we had a lovely day with them both and Josh was overjoyed that he finally got to go to the park with Wheeze and show her the swings.  After we had been to the park we went to a little cafe to have lunch and to feed Georgia.  People are funny, the stares she used to get for her feeding tube. Very few people would come over and ask us about it, i found children (with their innocence) were usually the ones to ask.  Honestly, I liked people to ask us, instead of pretending not to be staring.  One lovely man in Sainsbury's came over to Georgia and I and asked me why such a beautiful little girl had to have a feeding tube.  It's not taboo, it is just a feeding tube and I was always more than happy to talk about Georgia's condition, in a way it was a kind of therapy for me as it helped me to get my head round it.

Josh was (and still is) a little treasure.  If I had left the room and Georgia was sick he would come and tell me, a few times he even helped clear it up, bless him.  He understood that Georgia was ill, I often had to take him with me to the hospital when she was there and Rob was at work.  Still to this day when we drive past the hospital he says 'that's where Wheezy lived'.  It makes me sad sometimes to think that both of them have been exposed to this world of illness and hospitals.

I know Georgia's condition is not hereditary but I worry that in the future one of them might have to go through what we have and watch their child suffer, I really hope that never happens, they have had enough sadness.

In March we had an appointment to go back to Southampton to see the Cardiologist (Dr Roman) for a heart echo to check on how she was coping.  At the appointment he told us that she was not coping as well as he expected and would want to do the surgery as soon as possible, but her weight was against her, she still needed to gain more.  So back to the Island we came, feeling a little bit like we had failed in getting her to gain weight.  It took another month for her to get to the right weight for surgery.  Now we had to just sit and wait for the phone call to tell us when the surgery would be.  We were dreading it, we knew she had to have it but apart from the vomiting she seemed so well.  Then everything changed within a few days.

The glam life of a mum!

When Josh was born I was completely out of my comfort zone.  I constantly moaned about the lack of freedom, the worst thing to me was the fact I couldn't get a whole night of sleep without having to get up for a feed.  It seems laughable now, looking back I was so naive to think having children is just something people do with ease.  I am glad Josh was a nightmare for 6 months, he had colic, he never slept and to add to it whenever I left a room he screamed.  I personally think he knew what was to come and was preparing us for it!  That said, after 6 months he was a little delight, my little blonde bombshell.

Once Georgia came home from the hospital everything changed.  Now our whole existence revolved around this little bundle. 

We were lucky that Georgia was a good weight when she was born (8lb 8oz) so we now had the task of not only maintaining that weight but getting her to increase it to be big enough for the heart surgery.  I am ashamed to admit that this took over my every waking moment.  She had to be fed every 3 hours, she had to have her medications too, on top of that i had to daily change the tape that was holding her feeding tube to her face as she was a monkey and kept trying to pull it out. 

She started vomiting 2 weeks after we got her home.  I took her up to our local hospital to be looked at in case of any problems with her bowel.  Our lovely consultant, Dr Whaley, told us this was going to be a frequent occurrence with Georgia.  She was struggling with digesting her food due to her heart, she was getting tired and the only way for her to feel better was to get rid of the food she didn't want.  I took for granted the fact that Josh easily digested food, poor Georgia had a feeding tube so she couldn't just stop drinking.  We tried lots of things, small and often, a lot but further apart, break in the night, break in the day, but all of it had the same result, vomit.  I tried her with bottles to see if she would drink until she was full but she was not interested.  I tried feeding her in the dark, in the light, with every teat you can imagine, different bottles, different milk, flavoured milk, i even tied hair bobbles round the bottle to see if that would keep her interested but with no joy.  It was so frustrating.

One night rob was doing the 2am feed when he saw she had vomited out her feeding tube, I know it sounds gross but I didn't even think of the yukkiness of the situation, my first thought was 'it's 2am, she has no tube and I have to feed her'.  By this point my anxiety grew if I couldn't feed her on time, I was obsessed.  I didn't want to take her out of bed up to the hospital so I phoned Matt.  Matt is luckily a paediatric nurse and bless him he said he would be straight round.  I picked Georgia up out of her moses basket and realised the tube was only out a small way so I took a deep breath in and fed it back up her nose, then I got a syringe and checked the tube, sure enough it was in her tummy...............relief.  I then phoned Matt and apologised for waking him up and said I had solved it! 

Georgia's digestion was so slow that the tiny amount of milk that I would feed her would mostly still be in her tummy when we came to feed her 3 hours later.  My washing machine was working overtime to clean all the tea towels and muslins that we had to cover her in to catch the sick! 

Its strange when I write it down I remember how horrifying it was.  I never wanted to leave her in a room on her own in fear of her being sick and choking.  I hated sleeping, when I woke up my stomach would be turning as I looked into her moses basket to see if she had survived the night.  Most nights I just sat watching her in fear.  I wished she could tell me what was happening, I felt so helpless.

On a happier note I should explain the wonderful Matt to you.  My uncle, although more like a brother, as I said is a paediatric nurse.  I thank Georgia for bringing Matt so much closer to us.  I can never thank him enough for the times he put her tube back in or came round when I was freaking out, just his presence was reassuring.  He walked up and down our living room for hours with her when she was screaming in pain, trying to soothe her and give me a break.  So there you have it, Matt is an angel and has been there without fail every time we needed him, and still is to this day!

Just Panic

There never seems to be enough said about the nurses that work on these wards and how amazing they are. I loved every one of them, which is lucky as you are in essence trusting them to look after your poorly little baby when you are not there!
I watched one particular nurse, Ruth, take Georgia’s feeding tube from her nose and insert a new one with such care that she didn’t even wake her up!
Georgia had so much fluid on her lungs that they constantly had to suction it for her too, I was starting to wonder how on earth I was going to cope at home without them being there.
They trained me on how to give her feeds to her down the tube involving aspirating (pulling back on the syringe) to check on litmus paper (acid checking) if the tube was still in her tummy before I put the milk down. I then had to clean the tube through with water. All this had been calculated by them too, as she was fluid restricted. I was trained on how to give her medications, also down the tube.
My thoughts at this point were in complete chaos. What if the tube comes out? What if she vomits and I don’t know how much milk she has had, or medication? Panic started to set in.
In the middle of all this panic Josh was back at home after my mum dropped him off. It was so good to see him, we had both really missed him, but that was the first of many breakdowns for me!
At the time my uncle Matt was tiling our bathroom for us, mum had just brought Josh in and I was unpacking his things in his room. I remember how I felt but its very hard to describe. I try very hard to look on the bright side of things but this really only makes me bottle things up, I hadn’t realised I was doing that, I started to get annoyed trying to get this bloody stair gate up and all of a sudden just sat in the middle of the floor and burst into tears. I felt Matt sit next to me and just hug me until I stopped crying. I mainly remember Matt saying ‘Kate, you are allowed to cry’. He was right of course.
I am not sure how we managed really. Rob had to stay at home and look after Josh and I spent everyday travelling over to be with Georgia. They do have accommodation for you to stay in over in Southampton but there are so many patients that come from all over the UK, we lived relatively close compared to most.
Although we lived close the lack of work for Rob and the travelling for me cost us dearly in the end, this was the start of a very long journey financially. Our mortgage was with Northern Rock (boo hiss) and they had just had their big downfall, therefore in fact as the company was publicly owned then, we owned it! Still not once did they offer us any help, I applied to their ‘Special Case Team’ and was promptly called back by them to be told that because Georgia was not terminally ill they cant help us. How did they know it wouldn’t be terminal? I suppose if Georgia had died we would still be allowed to keep our house, but then what is the point if all the smiles have gone from it?
So it’s safe to say that I think Northern Rock deserve to lose the public backing!
I am sure there are thousands of people out there that this has happened to but it shouldn’t be allowed. We didn’t lose our house for a long time after Georgia’s first surgery but every step was hard, it is horrible worrying every time the phone rings or when someone knocks at the door. We were tied into our mortgage so tightly that even if we had been repossessed we would still owe them 36 thousand pounds.
So I went to pick up Georgia from the hospital with Matt, totally petrified that I couldn’t cope with it all. Little did I know that the hardest part of our lives was just about to begin and that it would lead us to more wonderful people.