Safety Net

Like every good tight rope walker who try to juggle you need a safety net, just knowing it is there to catch you should you fall.  Well with out knowing it at the time this is what the hospital was for me a safety net.

Having Ruaidhri was like becoming a mum again for the first time only ten times over. It wasn't just a case of knowing how to bath and wind him and feed him, there was far much more involved.  We where told about signs to look for, should he start to not cope well.  Mr Danton had explain that just because he had been well in hospital it was possible at any point for his shunt to become blocked and that is something that he did not want to happen.  Everyone kept explained how important numbers were to become in our day to day living, weight, milk volume, Sat's. How to know when he wasn't well, to be careful in case he got the cold because heart babies don't have a great immune system, and having a common cold for them could well end up in a hospital stay.  I know that these are facts of having a heart child now but at the time it was scaring the crap out of me.  So much so that I was starting to doubt that I would be able to do any of this.  How would I know when something was wrong, I had never been in this situation before.

Being in hospital and knowing that there is always someone that is there to rescue me should I doubt what I was doing was right, should I have a question at any time of the day, there was always someone to ask, there was always someone to see that Ruadhri was doing good and that I was doing it alright with him.  Why couldn't I take all these people home with me, so that I would know for sure that Ruaidhri's care would be as it should be.

We had been told that a community nurse would becoming round to check Ruaidhri stitches and make sure that it was infection free and would be there should we have any questions, and to change his tube should he pull it out which he was something he did enjoy doing, almost became a hobby for him. OK I thought that might not be too bad, still wasn't as good as what we had been used to, but it was still a net.  Fishing net size of net but neither the less still something to catch me, a professional to guide me should I need it(didn't quite turn out that way).

I still couldn't believe that the hospital had the faith in us to be able to care for such a small  person with a heart condition who needed to be tube fed, and so much looking after.  The nurse had been quite clear that once we could feed him there was no reason for him to be kept in.  But what about all the things we had been told, what to look for, what he should be kept away from.  My head was spinning how on earth are we going to do this, without the help of the team that we had, had with us for the past month.  They assured us that should something be not quite right or we had any questions just to ring the ward and they would be able to help us.  Still 30 miles away but at the end of a phone.  Great I thought, would we get given a phone like batman had to take home with us, so that at any time we could just pick it up and there would be someone at the end of it.  Sadly no it would seem the NHS haven't thought of that idea yet, probably don't have the funding for it either.  The last bit of advice was there is always 999.  Wholly shit I really wouldn't have to ring 999 would I at some point, surely it wouldn't come to that, would it?? (turns out we did but not till later)

Without our net I felt lost and alone and not really sure how this was all going to work out, and at what point of the day we were going to sleep, there seemed so much to take in and look for and we were to do it all by ourselves with no medical staff there in case we got something wrong.  And now with my confidence stripped and my nervous on the brink my safety net cut, I would have to take a deep breath, memorise the ward number and get one with things and learn a new way to do things and live.

Home Time

Hearing those words your free to go now.  These are the words that you look forward to hearing the moment you arrive at the hospital whilst filling out hospital admission forms, doesn't matter how many over night stays, small procdures, long stays you have you can go are the three words that any parent can not wait to hear.
I got the hospital in my foual mood and found the room where Lee and Ruaidhri were dressed and ready to wait on signing the forms and get the medication and clinic appoinment and spare feeding tubes.  Lee looked happy to be leaving, that was until he saw my face and that changed.  He ignored my mood for a little while, while he changed Ruaidhri into his going home outfit, that he had on for seconds no sooner was it on it was coming off as he had been sick on it.  Great start I thought I just stood while Lee changed him.  he asked me what my problem was and with that I could have really of stabbed him in the head with something.  I thought did he really not know what was wrong, this was not the time or the place to have this out, he told me to put a smile on my face and cheer up.  Yeah because it was going to be that easy I thought.  I was thinking of some choice names that I could have called him, as just as I thought of releasing the first of many the nurse came in with a bag full of medication, tubes, tape etc.  I had already had a pretty clear thought in my head who would be carrying that and who would be carrying the baby.
We said our good byes and Lee pleased as he could be with me in toll and we left the ward and waited  on the lift, in silance.  Lee put Ruadhri in the car and at that we were ready to go home.  We sat the journey home saying nothing, I was still so cross that I could just cry with angry.  Lee eventuallly broke the sileance by saying that by the time we got home he would need feeding as he had been put on a three hour feeding plan, I just carried on looking out the window, I couldnt even look at him. Why wasnt I happy I was with my two boys heading home to our very excited 3year old who was fineally getting us all together instead of having her mum and dad one at a time.
We had decided to leave Poppy at my mum's for the first night so that we could get used to his feeding plan and also how he would settle and how much of the night he would sleep.  These were things that we did not know about our son, we did not know if he had slept during the night while being fed, or if he woke up, how many times a night he would need his nappy changed.  Most parents of a 4 week old baby know all these things by now we were very much starting over.  Lee took him out of his car seat and said he was going to go and get everything ready for his fed, and he went to hand Ruaidhri to me,  that was when words came out of my mouth that I never thought I would ever say " I don't want him" (words that now i wish I could take back).  The look of anger on Lee's face I told him straight Ruaidhri didnt need me and he could cope so crack on and do what you have been doing, it hasnt bothered him up to now about me being involved, he told me to stop being so rediculous and pushed him into my arms.  As soon as he had his fed ready I handed him back and just sat and watched.  Why could he not understand that if he was going to take over in the hospital then he would carry it on at home, thats how it works for a mother with a new born, why should this be any different.  It came to bed time and Lee had sorted his basket and on what side of the bed he should be on.  I said he should sleep I would do the night fed.
We got through our first night and Ruaidhri had seemed to settle in well.  That afternoon we got him ready and went to get Poppy from my mum's.  When she walked in the door with Pop's she was so happy to see the three of us sitting there on her sofa, she couldnt wait to have a hold.  We got Poppy and off we went back home for our first night together under the same roof.  Poppy just wanted to help and hold her brother, which is only natural. I tried to settle into family life and a new routine, it wasnt coming as easily as it should have. Lee done most of the feeds, I would do the fetching of nappies, changes of clothes, pukey blankets, bowls of water to wash him down with.  This seemed to be working well I thought, until Lee had other idea's he would put Poppy to bed that night and I was to do the fed.  I done it, it wasnt that bad and Ruaidhri didnt seem to mind too much.  Lee on the other hand would point out that I was doing something not quite right, or I should do it the way he done, what did it matter as long as he was being fed, and just like that I told him to do it himself, there seemed to be so much stress in the air.
Poppy came down to the toilet and said she wanted to say night to her brother, Lee sat with them on the sofa and I took their first picture at home, it looked perfect and I felt my heart melt, but I still couldnt relax, what was wrong with me, and why wouldnt I sit with them and have a photo taken of all of us..I had a strong husband who had wiped tears from my eyes held me tight and told me everything would be alright and never once doubted the Dr's that would treat our son, Our amazing 3 year old who was taking everything in her stride and loving having her brother home, so why couldnt I enjoy all of this the same as they were..

Hospital Milestones

Hospital milestones or first if you like are not like your normal regular milestones.  These are ones that are always a good sign that you may be getting released soon, and a step in the right direction.

A typical mother milestone in the hospital is when the nurses are ready for you to clean up your babies sick by yourself and change their sheets without being watched, and it really is shocking how happy you become when this day comes.  So why did my firsts not happen on our first stay.

Mainly due to circumstance or as I liked to think it was a conspiracy.  Due to the way the day's worked out and who was staying at what day at the hospital different things had be going on. There had been talk of being put in to a side room, which would mean one of us would get to have our first over night stay with him, which also meant one of us would get to do the first night feeds.  This had all been exciting news, the reality for me though became very different.

I had headed home as it was Lee's turn to stay, I didn't really want to leave as I had got into a routine and became more confident around him and doing things for him, but at the same time I wanted to see my baby girl.

Lee's mum and aunt had been to see Ruadhri and when they came back she handed me a piece of paper, and said Lee wanted me to give this to you. I opened it up and read it, it said that Ruaidhri has passed his first hearing test. Just at that point and like he knew I had seen it my phone rang and it was Lee.  He was feeling all happy with himself that this would have been a nice surprise for me to have. WRONG WRONG WRONG and yes you guessed it WRONG again.  I couldn't say anything but thanks, then he went on to tell me that they had a room free and that he was just going over to the house to pack his stuff as he was going to spend the night in with Ruadhri, he said he would ring me later when he was settled on the ward.

My blood was boiling the rage I felt right at that moment was immense.  How could this be happening, and mores to the point WHY was Lee ringing to rub my face in the fact that he would be spending his first night with him.  Was it not enough that he had travelled to Yorkhill in the ambulance with him, was it not enough that he had changed the first nappy, that HE had done the first bath, but now in the matter of hours he had also done the first hearing test, was about to embark on the first night feeds and overnight stay with him.  Those should have been things that I was doing.(yes this was the start of the crazy setting in).  I phoned my mum to tell her of this outrage that had happened in the few hours of me leaving the hospital, her reply was it's just the way it has happened, it's all a good sign and thats what you need to think, its not about who does what first. Well I could see I wasnt going to get anywhere with this phone call, as she couldnt see how this was wrong. The next little while I sat and worked myself up even more, why was it so important that I thought it should be me that done all the firsts,  Lee was his dad it why shouldnt he be there and do these milestones. Lee had been texting me but I couldnt think of anything nice or positive to say to him, so I left it.  After a few hours he rang me to tell me that Ruaidhri was settled for the night, that he had done his first feed and all went well.  He sounded so pleased with himself and happy that the word discharge had been menionted for thhe first time, and how he was going to go get his head down before his next feed.  Why couldnt I have just been a normal wife and be happy for him that he was having this special time with his son.  Instead I told him that I was bringing Poppy to the hospital tomrrow and I would be staying and he would come home.

The next morning I woke up on a mission and a crappy mood hung over me,I was showered and getting ready, when my phone rang  it was Lee.  He sounded tired but was happy, he said he had some great news Ruaidhri was getting discharged today and that I should bring the car seat with me.  He was so pleased that this day was here, he said it had been the first thing that the Dr had told him this morning.  The red mist or fog as it had become was back, I told him I would see him in a bit and put the phone down.  Why was I so angry, why could I not just be happy this is the day we had all wanted, our first night together as a family all under the same roof.  Yet I couldnt get past what had happened and that I had missed some important stages and milestones. Why was I so hung up on this that I knew it would over spill to when I got to the hospital and would put a damper on this day, but it wasnt for shiffting, it started to feel that maybe mum's dont need to be there for these stages, that dad's can do an equally good job and bond in those special moments, but all I wanted to do was scream and shout at Lee for taking these things away from me.

Little did I know just how many other hospital related milestones and firsst I would embark on with his journery and how much Lee would miss.  Had I know maybe I would have just gone with the flow instead of crazy, unstable emotional nutter that I was about to become.

We could learn from our kids

Poppy's first visit to the hospital was a great one, I had been worried about how she would cope with the new surroundings that she was going to be put in. She had looking forward to seeing her baby brother for such a long time.  She had seen pictures of him and the family had been explaining to her that Ruadhri had a poorly heart and need to be in hospital to help make him better.

She walked down the ward like she owned it with full of excitement about seeing her baby brother and trailing her suit case at the back of her that Daddy had bought her.  She couldn't wait to show me what Daddy had bought her, her new clothes and a suit case which she thought was fab, she pulled out a drinks bottle and was telling me all the things she was going to fill it with.  And with that she took the bag of washing that was mainly covered in sick and put it in her case happy as Larry.

I really was amazed at how nothing seemed to phase her at all, she wanted to look in the cot and see him, she hung off the bars and looked down at him and said "awww he is cute, that's my baby brother" after trying to climb in the cot with him she got down and said I'm bored now, with that she walked to the play room.

Just like that she had seen what she had waited for never cried about how he looked, or seemed scared of anything around her, nope she took it all in her stride and found something to amuse herself with.  Looking like orphan Annie with her case in toll she was off to see what treasures she could find in the play room.

I couldn't understand why I had worried myself in to a state about what she would see and how she would cope.  To her it was just her brother who was a bit poorly.  Everything really was that simple to her, we had given her the facts and told her truth about what was going to happen and what was planned, she had taken it on bored and that was the end of it for her.  I thought maybe she didn't understand after all she was only 3 and we had given her very grown up facts.  Sure enough when she saw people and they would ask where her baby was she would tell them, he has a poorly heart and is hospital.  Simple, she would then go on to tell her little life story about how she had been going to Nan's work, and Daddy had bought her a case with wheels.  Even now I laugh at the thought of seeing her leave the ward holding Lee's hand (who is GOD in her eyes and can fix everything) pulling her case on wheels at the back of her, thinking how great it was that she got to put special gel on when she came and went.

Even as time went on with Ruadhri (which will follow)nothing seemed to phase her, she would help with cleaning up sick and change his bum, and she done it all with such love and kindness and never saw him as a sick or ill child, she would encourage him to do things, even get him in trouble at times.

To Poppy she had a brother with a poorly heart but that would stop him have a normal life in her eyes and she had no plans on treating him any different than had he been healthy.  She would make sure of that, ooh and she did even as far as dragging him round the front room floor by his feet.

Nan's First Visit

On the Saturday night my mum phoned to see if she could come and see us for a bit, as she hadn't seen either of us since we left Larbet which was going into week three.

So Sunday afternoon she arrived on the ward and  just melted when she saw him there lying in his cot.  She smiled she cried she couldn't believe how well he looked, she wasn't really sure what to expect.  I was feeling a lot better about things so we sat and I explained what had happened, it seemed easier to tell someone what had gone on rather that hear it..(hope that makes sense).  She asked what the machines were for what each wire did, I started to feel like an adult and not a scared child that I had felt I had become.  She told me I looked well but tired, and asked how I really was.  Fine I said the worst is over and should be easier from now on in.

She asked if she could hold him as she still hadn't had a cuddle.  That was fine so I picked him up and handed him to her.  She looked so proud and yet sad at the same time, she was trying hard not to cry, she wasn't sure what to feel.  Is this how other people would react to him, or was this just because it was my mum, his nan.  She was the first in the family see him.  Lee and I had made the choice not to let our mum's come and see him when he was in PICU as we didn't want to scare them into thinking that he was worse than what he was and what we had actually been told that he was.  What was the point of scaring people unnecessarily, and have them fret of what could be or what could happen.  Anyone who has been to PICU will know that sometimes it really isn't as bad as it all looks.

I was amazed at how well she took to him, but then why wouldn't she.  She saw a baby her Grandson a perfect bundle of happiness and cuteness that Nan's see. I asked her how she wasn't phased by the wires and beeps she simply said how can you not look at him and see a baby he is beautiful just perfect. So why wasn't I seeing the same, I was seeing wires, machines, numbers,nappy weights,tube flushes,medication times and volumes, new milk volumes, then I saw a baby.  But all the other stuff seem to be at the fore front.

As she enjoyed her cuddles and told me about her journey to Yorkhill Ruadhri had started to cry a little so she done the most natural thing and put him on her shoulder and patted his back, with that I shouted HIS STITCHES she got a fright and said I am sorry I just done what I would normally do.  It was ok it wasn't her fault she after all was just seeing to her Grandson,not going to lie I did get a small amount of amazement from it, but not as much as I was about to get.

Mum was sitting enjoying her Grandson talking to him, rocking him in her arms they looked lovely.  She had commented a few times on how often the alarms would go off around the ward.  Just then I notice Ruaidhri Sat's cuff had come off his toe, and with that the alarm went off.   I said to her What have you done, why is he beeping..With that a look of panic came over her, bless her.  I laughed and told her it was ok it was just his cuff that had come off.  As I sat and laughed she was trying not to be cross and calm herself down.  Looking back now that might have been a bit mean, but I do still laugh at the thought of that day, and still tells me it was mean.

it broke the ice for the rest of the afternoon and it had been the first time in almost three weeks I had laughed without wanting to cry off the back of it.  It got to almost six and the nurses told us we should go and get dinner as they were going to feed him and get him settled.  So I offered mum dinner in the canteen to which she told me NO, and said lets go get some proper dinner.  We went to Lebowski's which if you haven't been is the best burger you will ever have, and they do a mean cocktail.  Although it wasnt far from the hospital I was starting to feel ancy, and kept checking my phone to see if the ward had called.  Mum told me to just relaxing and enjoy my meal, we sat and talked and she said that I need to try and see Ruaidhri as a baby and not an illness, which is easier said than done.  It was nice to sit and chat, I held the tears back as I had done enough of that, and tried to explain to her that this wasn't something that was going to go away and it was hard for me to not see him as a medical condition, after all that is how he had been treated like the past few weeks.  I could see this would be something that would agree to disagree on, but it was still a nice night and for the first time in i don't know how long I had enjoyed a meal.

With that mum went home and I headed back to the hospital, I popped my head in and gave a quick kiss na night and then headed to bed, as I wanted to be back on the ward first thing to have more one to one time with him..

Shift Stays

Now that  the little man was out of danger we thought that it was maybe time to get some routine and give Poppy at least one parent at a time.  So Lee was the first one to go home for a few day's.

So we said good bye and I would see him in a few days when we swapped over.  As I made my way up to the ward I thought this would give me a chance to do things for him.  Now that Lee wasn't here I would have to man up and pull my weight with him.  I said my good mornings to all the staff and sat by his cot, he was still sleeping so I thought best leave him.  Then it hit me, this was the first time that I had, had any time on my own with him.  Lee had always been there with me.  Surely this wasn't right I thought back over the past two and a bit weeks, nope couldn't think of any time.  This was a big thing.  At feeding time the nurse talked to me and said that rounds would be happening soon, she asked were Lee was and told her that he had gone home to spend time with Poppy.  It really was just me and my little dude I thought, this was great I can get in all the cuddles that I had missed out on and change his bum and ask questions that I had not wanted to ask before.  Once she fed him he was sick and I panicked he seemed to struggle and get sleepy afterwards.  She explained that it had taken a lot out of him being sick, because he had a shunt that there would be things that would take a lot out of him. I took that on board and thought that it was great how she explained it so simply and without numbers.  She gave me the confidence to ask more and more over that day.This was my chance to get to know about what was going on and get some in sight into his conditions. But more importantly to get to know my brave little man.

After a few hours although on the ward it can sometimes feel like a few days, I had settled in and was getting to know what happens when, where everything was, remembering to save wet/dirty nappies so that they could be weighted.  For the first time since arriving I thought I can do this, the fear smog was lifting, and I was even manging to start conversation with the nurses.  Maybe this wasn't going to be as bad as I thought.

As the day went in nurses were offering up more information they talked to me about day to day stuff as well as talking me through what they were doing and why.  This was great I was being spoken to like a mum, no numbers no big words, just plain old simple facts.

I was starting to feel like I was getting there and coming to terms with everything at last...

Ward Life

Ward life is a bit like a wild life documentary when you first arrive.  You have been used to the peaceful surroundings of PICU and HDU (High dependency Unit), the one to one care and always having someone there.  Then when you first walk through those double doors there is no feeling of "tonight Matthew" it's more like you are waiting for David Attenborough to pop his head out from one of the side rooms and give you a run down of what's going on.

Ruaidhri had come on great he manged two day's in PICU and only half an hour in HDU when we got the call to say he was being taken to 5A, great wow this was amazing a huge step forward.  We got to the doors and buzzed to get in, gelled the hands as we walked down past the side rooms and reached the desk.  Where was everyone there was lots of nurses and Dr's about and kid's and the noise was enough to make your ears bleed to be honest.  We found Ruaidhri and a nurse had just been seeing to him.  There was a blue thin tube in his nose as well as his oxygen prongs.  What was this, the nurse that was with him had told us that she had just finished feeding him and would be back to tell us what was going on.  Feeding him I thought why does he need a feeding tube.  So we sat and waited for someone to come and see us.  As we sat and watched it was like a Zoo nurses going from bed to bed and trying to keep one of the older kids from escaping, he had the right idea I thought.  I never thought a ward would be like this.  Through all the chaos people seemed to know what they were doing and where they should be. 

Eventually a nurse came and told us what was going on and what the plan was.  She had explained that they had to give Ruaidhri a feeding tube for now as when they had tried to bottle feed him but he was getting to tired, and they needed him to have milk so it was better to do it this way for now, they would keep trying with a bottle.  So this was something new to get my head round. With that she said that the dietitian would be round to see us at some point that day, and Dr Knight would come speak to us.  She said that she would show us where everything was nappies, wipes, the bathroom and kitchen. Should we have any questions or couldn't find anything just to ask someone.  It all seemed to happen so fast, with that we were back at his cot being told someone would be back in half an hour to feed him.  So would this mean that I would get to hold our baby boy. I loved the thought of that but for now just sat at the side of his cot as I wasn't sure if I was allowed to lift him.  We watched everyone go about their business.  Their where families that you could tell had been here before and knew how it all worked and what you could and couldn't do.  For me this felt like the first day at school.  I was trying to take everything in.  The staff seemed lovely and tried to make me feel at ease, but it just seemed that we had gone from not being able to do anything with him to now being told we could do most things, change his nappy, hold him, pick him up.  They would still feed him for now though.  Feeding time was here again and she picked the tube up and I watched as she poured the milk into a syringe( or bolus) and watched it slowly go down.  This seemed mad.  We hadn't been warned about this, so why was it happening.  It was strange as I envied the parents that looked at home and just got on with what they had to do.

I was unsure of why we would meet with a dietitian as feeding had never seemed to be an issue that was bought up.  He was in for his heart so why would him taking milk be a problem. Hmmmmm Lee said we were to meet with the Cardiac nurse later that afternoon and she would be able to explain more to us. 

For now though I just sat at looked at him.  Lee seemed happy to go and get nappies and change him, the wires didn't seem to phase him at all he just got on with it.  Me on the other hand was too scared to touch him in case he broke, or broke more.  I was still trying to take everything in our new surroundings and now more new information. Surely there couldn't be any more to come.  I was starting to feel agitated as again on a new ward everything had changed and so it seemed had the plan.  Surely someone could have warned us about what to expect.

The dietitian came that afternoon and explained to us why he was being tube fed and how this was normal for babies who had just had surgery (well if it was that normal why had we not been told of this) and most of the time it was just a short term measure until they gained weight.  She explained that he would have to be at a certain weight and be able to take a certain amount of milk before we could even think about taking home home.  Right so there was my theory out of the window that once he had healed we would say bye and pop off home. So would this take a while? how short was short term? what was the weight? what was the volume of milk? and why are we not doing it all now? Is what was going round in my head.

Dr Knight came to see us and told us that his saturation levels were good and told us that his Sat's were at 86/87 per cent which for him was good and acceptable for a heart baby, and as long as he managed to keep them there all was a good sign for going home.  So it would seem it would all come down to numbers.

Would us getting home only depend on him hitting the right numbers.???? This is certainly what I was starting to think.

The nurse came and told us that if we had any clothes for him that he would be able to wear them.  This was great as odd as this may be we had never seen our baby boy in clothes yet, he had only been in his nappy, its something that you take for granted, oooh I was bursting at the seems at the thought of being able to put a vest on him.  That afternoon I shuffled back to our room as fast as I could and grabbed some vest's and with a big smile I looked forward to him wearing them.  Lee put the first one on him as I was still weary about touching him in case one of his wires came off or his oxygen prongs slipped down.  When Lee put his vest on he handed him to me and my first thought was what am I  meant to do with him.  As much as i wanted to hold him I was so scared of hurting him or making him feel uncomfortable that it was like being a new mum for the first time all over again, being nervous and scared in case something feel off.

Its a strange to feeling to have that now that the worst bit had been done and he now had his shunt, the ward step I thought would be an easy one.  But at the moment it was stressing me out more than the surgery, people kept throwing more information my way, telling me things that I wasn't prepared for.  Why had no-one warned us of any of this.  In Lee's eyes it was all progress and great steps for me it was like swimming in the dark in the sea, I had no idea which way I was going or what was ahead of me.

That afternoon we had our first picture taken of the three of us, although it was missing Poppy, it felt like the only normal thing that had happened that day.  I couldn't wait for her to come through now and meet her brother for the first time even though he was now two weeks old.  She wouldn't matter she would love him regardless.

A date with a pump

Not one of the most glamours post's that you are likely to read, and if like my husband you cringe at the sight of "lady adverts" as he calls them then leave now..But then my husband things women should have their own telly channel for "that stuff".

When  Ruaidhri had first got to neonatal I had been asked had I thought about how to feed him, yes I had made a firm plan and was going to stick to it, after having Poppy I knew breast feeding wasn't for me.  So it was going to be bottle all the way, or at least that's what the plan was, the nurse who stood before me had a cunning plan to change that.
I was then faced with a short tale of how breast milk was better for his digestive system and would benefit him far more, and all I would have to do is express, and with that short yet guilt ridden tale I was being led away to a dark room and handed a plastic box and handed a plastic bag with little bottles in it.  To say I was dreading what i was going to be faced with behind that door was an understatement.
The nurse sat me down and showed me a machine that to be frank wouldn't have looked out of place in a bondage magazine.  Then the words that came out her mouth so simply and like she was asking what the time was, right if you would like to get your boob out we can get you started.  I just wanted the ground to swallow me up, I know now was not the time to be shy after all I had, had a section a few days ago with people rummaging about while lee looked on.  So why did this feel such a hard thing to do. I mean we have all had one too many drinks and flashed our boobs at some point in our lives just because someone shouted "get your tits out".  So why when a nurse was asking me nicely and lets face it for a very valid reason to get my boob out did I want to run and hide, and try not to laugh at the same time.
Anyway with that I manned up(so to speak) and whipped it out and then she attached me to this machine that felt like it was trying to not only suck the milk out but the life out of me as well.  I thought these machines would be gentle, but hell no.  So once showing me again how to work it and told me to change when it got sore, I could see this being a short experience, before she left she said even if it its only a small amount its better than nothing.  Great so now I had the added pressure of hoping that I would be like Daisy the cow and produce bottle after bottle. yeah was a nice thought. When she left I thought thank god I was on my own she had left the telly on to help me relax.  Just then the door opened and in walked a women, my first reaction was to grab a top and cover up, and I whilst I am having this thought she sat down pulled out a boob and off she went.  Then it started, the small talk. She seemed pleasant enough I just felt like now wasn't the time to get to know someone.  Its a bit like when you have a smear test and the nurse/dr asks you where you are going on your holidays whilst your chuff is on show and you feel like your dignity has left the building. All I could muster was a nod and a ah right every now and again in the hope that she would feel my unease, and maybe just watch the telly, no such luck there. In the end I had to leave this situation, I would come back in 10 minute's and try again.
My second trip was even less successful and deflating, I walked in the room to be faced with a women who not only had one but both boobs attached to machines whilst doing some paper work.  My god I am struggling to do a boob at a time and there she was like a one women milk factory.  Why couldn't I do that, were mine broken, I had left more in the bottom of my coffee cup that morning than what I was able to fill in these bottles.  They had clearly been hopeful that I would be able to fill the bottles as the gave me loads. I hoped that Ruadhri wasn't planning on being to hungry, I know they said they wanted to introduce milk slowly but this was a joke.  I tried not to stress and was told that there was a pump I could borrow at the house. Ok I thought maybe if I go back our room and sit and read or something then maybe i might have more luck. The nurse had told me that anything I was able to get I should put in the freezer. Right I thought I can do this off I went. There are no telly's in the rooms so all I could hear was the machine clicking back and forth, right try and block it out, think of other things. Then I could start to see milk coming out great I thought it;s working.  In total I managed 20mls which I was feeling pretty happy with it was a start.  That glory was shorted lived. As I went down to put my efforts in the freezer feeling happier than I had done a few hours before then BOOM there she was.  Standing in the kitchen eight bottles of milk in hand with  her freezer basket toppers with boob milk.  I hated this women, I didn't know her I didn't even speak to her but she was just flaunting it, as far as I was concerned.  Did she have super boobs or something This was unfair she had enough there for the both of us. I put my shameful amount in the freezer and went back to the hospital with my head hung feeling like I was failing.  This should have been a task that was easy, we are forever being told breast is best, and yet all I was feeling was stress, soreness and like nothing was going right.  Maybe I was doing it wrong, all I knew was that I needed to keep trying if nothing for my boy.  Even if it did mean being so sore that my boobs would bleed.  I did try for a few day's but when the nurses saw how little I was handing over agreed that they would use bottled milk.  Great I thought even they think I am a failure.
Lee tried to reassure me that it was ok and that it didn't work for everyone, and bottled milk will be fine, I wished I was sharing his enthusiasm.

A few days and after being really sore and on a visit home, I had gone shopping to get some tops for the hospital, and that's when it happened.  I was about to try a top on and I felt my top was wet, yip my boobs has decided to explode milk not just one of them but two of them.  I just wanted to cry but couldn't in a shop full of people.  It was like a cruel joke that my body was playing on me why couldn't this have happened days before when I wanted it to.  I felt so rubbish and just went home and cried on my bed, couldn't even tell Lee what had happened in the shop as I just felt so useless and that I was letting him and ruaidhri down.

I would still pass that women who became known to us a super boob and I would secretly hope that her boobs would fall of one day, that would teach her.

Progress

Any parent will tell you that any progress no matter how minor is still progress and a step in the right direction, it's forward.

The day after Ruaidhri surgery we were on good form and feeling good about what the day ahead was going to bring, the stress of the past week seemed to go and we could see the way forward.  It was another early rise as we wanted to be on the ward for rounds and to see how he had managed during the night.  There had been no phone call which can only ever be a good thing.  For once it was the no news is good news factor.  We got up to the ward the staff had changed over and everyone seemed in good spirits about the night he had, had.  We noticed that there were a few less things going on, they were hope full to get the drains out as there was nothing coming from them, they had already started to wean the drugs and there was talk of starting to feed with milk.  Wow we couldn't believe it, what an amazing boy we had, he seemed to be bouncing back and kicking this thing in the arse, he was coming on leaps and bounds, there was even talk of him being moved to the ward within a few days.  How could this be I thought he would have been there for a ages.  He was still on the ventilator at this point but they had started to bring him round, and although he was still puffy he was showing signs of life and movement which is all any of us had wanted.  The strangest and most upsetting part of that morning was watching his face cry and his monitor beep and the alarms going off, but nothing coming out.  There was no noise, never before have I wanted to hear a baby cry so much as I did then, then it dawned on me I hadn't heard him cry since he had been born 7 days ago.  This silence seemed cruel and painful, we were assured that he was fine and they would keep him comfortable, the nurse told us that she would let Ruaidhri guide them on how much he would be able to take that day.  We truly were amazed at how quick things seemed to be moving along.  There was something in the back of my head that was thinking maybe it's all too good to be true and too quick.
While I sat there feeling hopefully for the next few day's the parents across from us still looked full of worry as their baby was still very much attached to a lot and had a lot going on.  Every now and then a nurse or Dr would go to them and draw the curtains round.  I felt for them, there was us looking forward to moving to the next stage and the next ward and they still looked full of dread and worry.  I asked the nurse what was wrong with their little boy and all she could say was he had heart surgery but he had a more complex condition, that was all she could tell us.
  The nurse who was allocated to look after our brave little dude was a bubbly lady who seemed to see nothing but sun at the start and end of her shift, she was up beat and happy.  I asked her how could she be so happy on a ward like this,and her answer was simple she loved her job and she loved having one to one care with the children that she looked after and at the end of the day she could go home, she said that us as parents had to carry on and live through what ever the future had in store. That was the first time I started to realise that maybe the bubble I had thought we would live in maybe wouldn't be as rosy as I had told myself it would be. With that she told us that we should go and get something decent to eat and try and relax as it was her job to worry about him today and get him to be where he wanted to be.  We decided to stay for a while and sit and watch.
To pass the time and try and lighten the atmosphere that seemed to be getting heavier around us we sat and wondered what Dr Knight and Mr Danton would be like out side the hospital, what cars they drove, hobbies even down to what they would drink at the end of a long day.  We came to the conclusion that Mr Danton would have two cars, a weekend runner and a work one (the work one being an Audi and the weekend one MG) his tipple would be Irish whisky(mainly due to the fact he was from Northern Ireland and we couldn't see him with a glass of wine or pint), and golf would be his relaxing time.  To this day I have no idea how close we were to getting it right.  Dr Knight would have an old reliable car and would be a red wine drinker. Turns out he cycles to work. Still it past the time. We got told that the ward would be closing at some point that afternoon so they could attend to one of the babies on the ward, it wouldn't be for too long hopefully.
Lee thought it would be a good time to nip home for a bit, but I had a date with a dark room and pump..

so what is TOF

So some medical facts about Tetralogy of Fallots, you are going to see some words that you may look at and think good lord what on earth does that mean, I know I did.  But to help us understand what is going on with our little babies body's we do spend a lot of time reading about what is wrong and trying to explain it to others in a way that they understand without freaking them out with medical terms.  Sadly broken and cant be fixed only patched doesn't really explain much to people.  So here are some facts bought to you by the British Heart Foundation:

Tetralogy of Fallot is a serious heart abnormality. There are 

two main problems. 

• The pulmonary valve is narrow (pulmonary stenosis) and 

 the muscle below it is thickened. (Ruaidhri's valve never grew)

• There is a large hole – called a ventricular septal defect 

 or VSD – between the two main pumping chambers of 

 the heart (the right and left ventricles) (Ruaidhri's could not be patched)

In the normal circulation, blood passes through the lungsto collect oxygen. In babies with Tetralogy of Fallot, the narrowing in the pulmonary valveand the thickened muscle below it mean that less blood can flow through to the lungs. This means that thelevel of oxygen in the blood is low.Your baby will need to have an operation to correct theproblem. This usually takes place when the baby is 6 to 12 months old, but the timing varies from one baby to another.          

Hope I haven't lost you just yet.  Symptoms :

The low level of oxygen in your baby’s blood can make him or her appear blue, particularly on the lips and tongue inside the mouth, and on the hands. How blue your baby looks depends on how severe the pulmonary stenosis is. 

,Some babies appear pink and just become slightly blue when they cry, while others may appear blue all the time. 

Some babies with Tetralogy of Fallot may have attacks where they suddenly become very blue, or very pale or floppy, or faint. These are known as hypercyanotic attacks,and are sometimes called spells. If your baby has attacks like this, you should tell the paediatric cardiologist immediately,because the attacks can be very serious and may even be life-threatening. It is usually possible to control these attackswith medication, but they can often mean that it is time to plan surgery. (Ruadhri started to have the spells before his last surgery)  

If your baby is diagnosed with Tetralogy of Fallot, your doctor will discuss with you the option of having a test to find out if he or she has a chromosomal abnormality. If the Tetralogy of Fallot is diagnosed before birth, this test can be carried out before your baby is born.(We never knew until he was born)

Most babies can go home as normal soon after birth,as they don’t need any special treatment immediately.

However, your baby will need major surgery later on, usually when he or she is between 6 and 12 months old. Without this surgery, most children with Tetralogy of Fallot would die before adulthood. 

Surgery

The type and timing of treatment depends very much on how blue your baby becomes, and on how well the pulmonary artery grows. If the pulmonary artery doesn’t grow well,your baby may first need to have a shunt operation to improve the blood supply to the lungs, and later on havea major operation to repair the heart. A shunt  operation usually involves placing a small tube between the pulmonary artery and the artery that feeds blood to the right arm. Very occasionally a valvoplasty may be done instead of a shunt operation. This is when a catheter (a fine,hollow tube) with a small balloon at its tip, is used to stretch the narrowed pulmonary valve open. You will need to take your baby for outpatient visits after any of the treatments described above.

If the artery has grown well, your baby will probably have a single major repair operation. Your baby will be given a general anaesthetic. The heart is stopped and the function of the heart is taken over by a ‘heart-lung machine’, which makes sure that blood is still pumped around your baby’s body.

During the operation, the surgeon will close the hole between the two pumping chambers of the heart (the VSD) (Ruadhri's couldnt be patched)by sewing a patch over it. The narrow pulmonary valve will also be widened. If there are also narrowings in the pulmonary artery, these can be treated at the same time, by sewing a patch into the wall of the artery.
After the operation, your baby will have a scar in the middle of the chest along the breast bone.
Although this operation is often called a ‘repair operation’ or ‘corrective surgery’, it never makes the heart completely normal.

What are the risks of surgery?
Most children will survive surgery and have a very good quality of life.

However, all major heart operations are very serious and carry a small risk of death, or of major complications such as brain damage, kidney damage or lung complications such as pneumonia. It is important to understand the risks associated with your baby’s operation. The cardiac surgeon will explain to you the risks for your baby before you give your consent for the surgery.

So those are the facts,it's a lot to take in but its facts that families are dealing with all the time. They are having to digest and filter out what they tell people, you never want to give all the facts.  Its pretty straight to the point punch in the bollocks kind of stuff and its what you pretty much get told in hospital.  It is very much a live or die situation and no-one wants to deal with that in their child, or face the fact's. I hope this helps people understand why heart parents are some times a tad emotional, angry, tired, stressed out people, and the reaction you get from them when you say, "it's alright they can be fixed and be normal" is justified.  And why if you have a cold they say don't visit, heart children don't do germs well, and they don't just get colds they get hospital stays.  Each child is different you will never have to two children with the same symptom's or condition and each child needs to be treated differently from the next. Anyone with a CHD child lives in fear and on their nervous and you are forever wondering what the next day brings, or what the next clinic appointment is going to have in store, when the next surgery date is going to be. Your whole life changes...

PICU

Paediatric Intensive Care Unit or PICU for short, does put the fear of god into anyone when you first go there, it will put a tear in the eye of the hardest man and the coldest women.

The first thing that strikes you in when you walk through the double doors other than the fact I wanted to say "tonight Matthew I'm going to be"(yes inappropriate but it really does have that feeling) is the mother ship like desk at the bottom.  It's a round desk with lights and white boards was half expecting a cling on or captain Kirk to appear, or someone to shout beam me up, which trust me is nothing you want to hear on that ward.

After the ritual hand wash and gel treat we got shown to Ruadhri's cot.  Wow they really weren't kidding when they said there would be a lot of wires, i really didn't think it was possible to put that much on one small body like his.  It was dark when we got there as it was lights out on the ward.  Ruadhri was on a lot of drugs and very puffy looking the marshmallow man came to mind.  All you could hear was people whispering and machines beeping and alarms going off.  They assured us that he was ok and that they would see how he went and would start to wean him off some things during the night.  I so wanted to pick him up and hold him I knew I couldn't.  The wires and machines did scare me and the chest drain and pee bag the list seemed long and endless as the nurse explained what everything done.  We got given seats and we sat down, we couldn't really see him as he was faced towards the wall and was on a slope, but he did have his bear with him.  If felt odd just sitting staring at the top of his head.  I did say to Lee that at least this one was top free and he said it was this years sports model.  I wanted to laugh but it really did not seem the time or the place.  Have you even been so full of nerves that you just want to laugh out loud, well that's how I felt.  The atmosphere was heavy and felt full of worry and sadness, which is of course what you would expect it to be.  As we sat I looked around and there was other people sitting by their babies staring at plastic cots watching the monitors waiting for an alarm to go off. Once we had settled in it started to feel calm in there, well for me at least.  I saw the other babies who looked far worse than what Ruaidhri, the look of worry on the faces of the couple who's baby was opposite and the tears that fell from her eye's.  I wanted to go and tell her it would be ok and give her a hug.  But that would be odd and very strange and they might have panic ed or thought I was on day realise(turns out she does think that about me most of the time now). I sat and wondered what their story was and hoped it would be ok for them, as I thought that now after seeing our baby boy and knowing all had went well that we would be home any time soon and I hoped the same for them.
Mr Danton was doing the rounds with Dr Knight (cardiologist) and came to us.  Lee stood up and shook his hand there weren't enough thank yous that could be said to this man.  This stranger who had kept his word and looked after our baby and bought him back to us(the irony is he was there at the start of his life and at the end) he had told us again he was happy and did not expect any problems and that he should only be in there for two days at the most before going onto the ward.  Dr Knight was just about to explain about TOF P/A when Lee jumped in and went "it's ok i'm genned up ask me anything, I've read the book", for this being my first meeting with the man I wasn't sure if he was going to take this light hearted or be annoyed.  But give him his due he asked and Lee was right(which pains me to admit) Lee looked like a child that had just passed a spelling test. It did break the ice but still didn't feel right to laugh.  They both left us and told us to go rest and they would see us in the morning. Before he left Lee asked if they had used wire on his chest bones.  My first thought was that's an odd thing to ask why would you.  The puzzled look I had on my face must have told him that because he then told me that they would have had to of cracked his chest to get to his heart.  WHY WHY did you feel the need to bring that up now was my reply, to which he said well how else do you think they would have be able to work on his heart.  He was onto something there, I hadn't really given it much thought but that just seemed like such a violent way of doing something that was to help him.  Then Dr Knight explained that he would just fuse back together in his own time and his bones were still soft. Turns out his heart was the size of a walnut as well which again is another fact that I am sure could have been saved for another time.  Yes this is going to sound thick but in my head I just thought that his heart would be heart sized if that makes sense.  I never thought about it being like the rest of him that would grow with him.  That statement there probably tells you why the Dr's addressed Lee..I do get better as the journey goes on..Honest

As we left the hospital and walked out into the night air the sky was clear, for all it was January it wasn't as cold as it should have been, or maybe we just didn't feel it.  We both took a deep breath of the fresh air it felt like such a relief, Lee cuddled me and said right lets get a chippy.  Although it hurt to walk every step to the chip shop I wanted to do it it felt like nothing compared to what our little man has just been through.  We got back to the house and sat in the communal kitchen and chatted about the day's events and went back to how Mr Danton had strolled into the canteen and gave us heart failure.  As we sat we noticed faces that we had seen round the hospital.  It had been a long day and we just wanted to sleep, we went to our room the Oscar Rabbit room and laughed about how we would be spending the night in single beds.  Lee had posted that it was a romantic night in the Oscar Rabbit suit for us, we did laugh but the truth was I wouldn't have been any where else that night.  He lay beside me and cuddled me and for the first time that day I really believed that everything was going to be alright and that tomorrow would be a better day and we would come through whatever this was..

6 Hrs feels 16

Now that Ruaidhri had gone to have his shunt put in we were at a loss of what to do, as we had been told if we have to leave the building not to go to far "just in case", in case of what?? A question for once I did not want to ask or hear the answer to.

Lee had gone for a smoke and for some fresh air, i know those two don't belong in the same sentence never mind.  I was left in the canteen wondering what to do and how to pass the hours that followed.  We had been told that give or take he should only been away for 6 hours, ok I thought that's not too long, and looking back now was far less than his last surgery, but that's another story.

There was plenty of people about chatting but I just felt like I might as well have been the only one in there.  I was at a loss and even in a hospital full of parents and children going through stuff I still felt like I was the only this had happened to.  I decided then that, that is not the case and I would prove that to myself.  So whilst having a coffee I went onto face book and searched children with heart problems, and just like that I had a list before me.  There was one in particular that jumped out from the rest "heart mummies for Scotland" great I thought.  I sent a request and just like that I had been added into something new, a hole new world of people who would know and understand what life was going to be like and who had been going through their own journeys and yet still found time to show concern for mine.  I left a short post saying that my 6 day old was going for surgery and within minutes I had these mum's wishing me luck and praying for a speedy recovery.  I was over whelmed, it was a strange feeling to have these ladies show so much support and concern when all they knew me from was a short post. I sat and read through some of the posts on the page and as I was reading my first reaction was these things are really happening to people, families are really going through the mill.  I was reading about blue spells and feeding problems and sleepless nights and bad sweats, bruising easily and problems with medication.  It really did not seem real.  We had been told none of this, is this what we would face, would we be going through the same problems. We had been told that once the shunt was in place the blood flow would be better and he wouldn't need surgery for at least two years after that and he would have a normal quality of life.  But that didn't add up to what I was seeing before me on a page.  Was I really that naive to think that once we were home and away from the hospital that life would just be like it had with Poppy and how it should be taking a new born home.  But then I thought why wont Ruaidhri have a normal life and be like any other new born, his condition didn't seem half as bad as the ones I was reading about. We kept being told that TOF was one of the more common CHD's so I sat in that bubble and believed that he really would be "normal" when it came to take him home(how wrong I was).  We knew that his heart could never be fixed that they would just keep mending it to improve his quality of life and there had been talk of when he was an adult of a heart transplant but my brain wasn't thinking that far ahead.  So I done what any other emotionally unstable mother would do and closed the page and thought nope that's not going to us. ( Even just writing that and thinking back I really did believe that, and if I could go back I wouldn't have closed myself off from it all, I wished that I had embraced it instead of trying to run from it)

The hours passed and we drank more rubbish coffee and then we got told that we could go collect our key for the Ronald McDonald house as we had been given a room, which was great. Had no idea what to expect, we arrived and got showed round and told were everything was and read and signed the rules.  We dropped our bags and went back over the road to the hospital you know just in case.  The day dragged and I kept thinking about the posts I had read..Did I tell Lee that I had found this group or was it took much for him to take in telling him that there are lot of families who have done and will be doing what we are.  Would he think I was jumping the gun and thinking for the worst to happen.  For now I just kept it to myself it would be my thing for now.  We made phones all day and text people to say that we had heard nothing and were still waiting.  We knew he would be going into the paediatric intensive care unit (PICU) and we had been told that he will look worse than what he was and there would be lots of monitors and wires but to keep in mind that everything was doing something.  Lee had said that at some point we would meet with a cardiac nurse who would explain things to us and answer any questions we had.  Lee had been given a book that explained the main group of CHD's which he read and read and read some more, he was determined to know everything there was and he was even set for the Dr to give him a pop quiz.  He called it being on the ball I called it annoying.  Because he was in the Navy and was a helicopter doctor (engineer) he thought that it was the pretty much the same thing in a round about kinda way, and that fixing a heart was the same as plumbing..Hmmmm yeah, don't really fancy the thought of a plumber doing ohs(open heart surgery).

We sat and he was telling me everything there was to know, he had googled everything he wanted to know including the surgeon, he was determined that he would know everything there was to know even down to the type of shunt he was going to have.  It was a gortext one, so now in my head I have a picture of a gortext garden hose being put into my son's chest, and I do actually the width and everything. Lee just looked at me and rolled his eye's, we did have a chuckle over it. I did say to him some times knowing too much can be just as bad as knowing nothing.  

It seemed that we were in two different places, he was being head strong and sensible and I just wanted to lie in bed with the covers pulled over my head and pretend that all this was a nightmare and that if i woke up it would all go away.

It got to after six and that time that we had to eat whatever delights were being dished up, as we sat playing with our dinners because lets face it anything has to be better than eating it.  Just then we saw a man in scrubs walking towards us, I was thinking I know his face...Yip it was Mr Danton, Lee and I looked at each other and he took my hand and squeezed it, my heart dropped and I wanted to be sick why wasn't he in theatre with Ruaidhri why was he here.  He must have seen the look of fear and dread that we had and he told us that it had all gone to plan and the way he had wanted and he was happy. He told us that they were just getting ready to move him to PICU and then we could go see him.  Thank god, we both let out a huge breath, Lee said see told you it would be ok.  After Mr Danton walked away we laughed as we watched him get his coffee and a cake that in our eyes he had well and truly earned and some. He said he would see us up there in a bit.

  A bit to you and me would be 45 to 50 minutes at most, not in yorkhill that means three hours time.  What he had failed to tell us is how long it takes for them to take him to PICU and that they would shut the ward down etc.  So we waited and waited then started to panic after two hours, and then the phone rang, those words that every parent waits to hear, you can come and see him now. (you will start to see a pattern with waiting for phone calls that you want and the ones you don't and lots of waiting).  I couldn't wait I was nervous and excited and yes wanted cry some more(again there is a lot of this going to happen), I thought we are closer to getting him home were he belongs.

Lee was more excited at the prospect of telling the Dr's about his heart knowledge and get them to ask any question.  He had learnt both of Ruadhir's conditions whilst waiting that day. If they had offered him a sticker he would have taken it. He really is a geek.

So hand in hand on the eve of our wedding anniversary we made our way to the 2nd floor and pushed the buzzer and waited as I faced being giving the best anniversary present in the world, seeing my baby boy and knowing that his surgery had been a success.  There wasn't enough leather or crystal in the world that would have given me the same feeling (that's what you get on the 3rd year).

Food is fuel so don't eat in the hospital

The title pretty much sum's it up.  Food is fuel and although you never feel like eating you have to so that you don't wilt and fall my the waste side, and there is nothing worse than trying to have a serious conversation with a medical professional and your stomach makes a loud grunt because it hasn't been fed.

So my first comment was when we had our first mealtime experience, because lets face it when you have to guess what meat is in a pie it becomes an experience, was I would like to shoot the person who agrees to put this crap out every day.

Breakfast the most important meal of the day the one that will start you off on your way with what ever you have to face that day.  Not so much the case if you eat in the canteen.  The cooked part of it sits under hot lamps for a good hour so if your not there first thing when those doors open you go from already slightly firm and bouncy food, to it being like a cutting into a concrete slap and eggs that rubbery the only use for them is to bounce them on the floor.  The scrambled egg, an easy pretty low cost food and certainly extra easy to make.  So why when I am stood staring at the egg's under the hot lamp and wondering if they are in fact real eggs, never before have I seen scrabbled egg be cut like a cake and it in fact stay in that shape until it reaches the plate, where it then takes to just wobbling. So it is easy to see why I vowed to stay away from the eggs.  There was one occasion when I went for breakfast and I saw a veggie sausage, great I thought that's for me I know what I'm getting with that.  i was feeling pretty pleased with myself that I was able to enjoy a roll at breakfast time that wasn't going to weigh me down and sit in my stomach like a led balloon for the rest of the day, or bung me up for a week.  It was not to last, I went in on a Saturday morning looking forward to my veggie delight only to be told that they don't do them at weekends.  What am I hearing this right, so my natural reply was, so do all the vegetarians only come to the hospital Monday to Friday or do they just starve at weekends, the blank expression that was staring back answered my question.
Stick to cereal it's easy and you know what you are getting.

Lunch is always a good time to have a light snack just to top you up for an afternoon of sitting in a roasting hot ward or side room, Wrong what you do in fact get offered is more cooked delights from the cooks that bought you the breakfast that should come with a warning not to go swimming after eating.  If you stick to the bread items your pretty safe although after a few weeks of eating bread for lunch you think I know I will try the baked spud.  Surely they can get that right.  Wrong again, never before have I cut open a baked potato to find nothing but skin.  Yes that's right it's been cooked that long that the potato has in fact pissed off and left, I wanted to ask how they have managed that. In my eyes that has to be a pretty skilled cook to be able to do that.  So what you are in fact left with is a filling that you have chosen from the fridge(tuna, cheese or coleslaw) and a hard over cooked jacket skin, thank frankly looks like an 90 year old skin that has spent all its life in the sun baking.  If that doesn't scream delicious then i don't know what does.

Dinner the meal to end the day with, the one that says right its the last meal of the day lets enjoy and fill your tummy up so your left feeling content and ready for an easy evening.  Yes you guessed it Wrong again.  Now this is where the problems really start because all the sandwiches and bread products have usually gone so you are left with cakes or yip more cooked delights.  Ok so I am pinning my hopes on that either the staff have had a change over or I am just that hungry i would eat anything even my own arm right now.  So it's a gamble do we go for the fish, the curry or the pies.  Tough choices and I know that you are sitting there now picking one that you would eat.  Ok so the curry looks pretty good but the rice not so much, ok not a problem we could have them with chips that look like that they have been sitting there since lunch time. It's still an option not to be ruled out.  Pie ok we could have that with beans.  The beans would soften the pastry that looks like you could probably cut steel with, but the next question is, what is in the pie, if anything at all because lets face it if a jacket can be empty whats to say the pie filling has gone the same way.  The fish has already been ruled out just by the sheer fact that it looks that stiff I could in fact (and actually did one day) pick in up by one end and hold it out straight.  Ok so curry for me and pie and beans for Lee.  As we sat down to the tasty delights Lee is looking forward to having a scotch pie.  But wait what is the meat inside its not beef mince, its not even steak mince like you make think. Nope we are told that it is in fact turkey.  Sadly the gamble of having pie didn't pay off but at least the beans looked and tasted like beans.  The curry in fact wasn't as bad as first thought but did leave a long and very lasting after taste, in that every time i burped it was like eating all over again, which in Lee's eyes was getting your moneys worth.

What we did find was that over the course of all our hospital visits and stays that there was no hope of the food becoming any better or any less lighter to eat.  So we had to find a way to help our digestive system out. So we had to stay away from anything that looked like it was going to bung you up for a week, not to have too much of the coffee as you could not only stand a spoon up in it, it would keep you awake for days if you have too much and drink plenty water, and should your stomach need a helping hand in trying to rid itself of all the led that you have eaten, eat a whole bag of cheap mint imperials as that will sort you out.

What I did find really shocking is that the stuff served in the canteen was also served in the wards. No wonder the kids that were on the wards weren't putting on any weight, it was because they didn't eat.  How are children that need to get better and heal do that on the stuff served to them, most of the kids we met on the first stay would live off of yogurts, that's not great.  I would love to get the people who agree to put the food out and make them eat the three meals a day for a month and see how they feel after it.  Bet they wouldn't be so happy to put it out then.  Lets go one better lets get the government to eat the food for three months three times a day and see how smug they would be then.  The food is only good to serve in prison and I would bet any money that the food in a prison is better than that of a sick kids hospital.

Other than a source of entertainment to de-stress i can say that I found no nutritional, value in anything I ate there other than the fruit, and to be honest even that looked a bit sad.
I do think that the staff that work on the till there should be paid slightly more money as they have to stand there day to day a bite their tongue surely.  I could never work there I would be forever telling people not to put that shit any where near their mouth.

There was a plus side to the canteen we did get to meet and talk to some really lovely people and some amazing kids, and hear some incredible story's that would give you some hope and always a sense that maybe our journey wasn't as bad as we thought it was.

D Day

Ok so it's Monday 30th January 2012 and the day that I have spent most of the night before dreading and wondering how the day was going to go.  Lee and I were up and about early as we  had been told the night before to be at the hospital by 0730 so that we had time with him as no-one was sure where on the list you would be.

It was an odd start to the day as when we woke up Lee wished me happy anniversary, and then the next conversation was about the surgery. I shuffled about getting ready and still going at a snails pace and too scared to sneeze in case I popped a stitch, which I have to say I had always taken for granted until I had the pleasure of having a section.  I just wanted to get going and get to Glasgow as soon as we could.  We put the bags in the car still not sure of anything that we had packed and even if we had enough, and off we set.

We made small talk in the car in the hope it would get us there quicker, it didnt.  Lee was pretty clued up on what was going to happen as he had looked it up on the Internet, (sometimes the Internet is not your friend let me tell you)which of course the hospital tell you not to do as you will freak out.  Lee said it was maybe better if I didn't look for now as I would more than likely freak out more than what I already was.  The drive seemed to take for ages but all the way I had the song "Sunshine on Leith" going round in my head, which for who knows what reason is the song that I had had stuck in my head since having Ruaidhri. We chatted about  what we thought the surgeon would be like and what he would tell us, as today was the day that we were finally going to be able to put a face to the name of the man that people kept talking to us about.

We arrived at the hospital and pushed the lift button, these lifts are the most unreliable and useless lifts that I have ever had the misfortune to have come into contact with, and with that we took the stairs, I wanted to get to our baby and if it meant feeling the pain then so be it.  Waiting on the lift there would have felt like a week and it was always a gamble as to how many times you would go down to the basement before actually getting to the floor you wanted, that is of course if the lift stops at that floor.  This morning was not one for gambling.

We get to the ward and there he is our peachy baby boy so unaware of what his morning was going to entail. They told us that they had taken some bloods and had some on order for a transfusion should he need it and that someone would be along in a bit to tell us what was happening and get us to sign the consent forms to say that we agree and allow the surgery to go ahead, (because we had a choice).  So we thought right that's good things are happening and the ball is rolling.  Wrong, yet again we had to wait and wait and wait some more. They do like to keep you waiting.  At least if they are going to keep making us wait get some decent chairs.

About an hour later the nurse asked if i would like to have a hold of him and have a cuddle before they got him ready for surgery.  Like I was going to say no to that.  Bring it on let me finally hold our baby and have some human contact with him that does not involve a plastic container in between us.

That moment when they passed him was like heaven, I never thought something so simple could bring so much joy and a feeling that every time I think about that first cuddle could take me right back to that moment and have those feelings all over again.  The nurse took some pictures of the three of us which was lovely.  Lee had a hold although only for a short time as I wanted him back, he had spent more time with him than I had.  The nurses left us for a bit while we had some family time.  I did say to Lee right if you take him I will keep a look out and we could do a runner, he would run I would shuffle.  He said as good as an idea it was we couldn't.  And then the tears start, it's really happening we are going to hand him over, this really is happening to us.  All he could do was put his arm round us and tell me that it would be ok that everything was going to alright and that once this was done we crossed our fingers and he will be home with us in no time.  Just then the nurse came and said that the surgeon was on his way.  She told us he was one of the best. One of the best, well who is the best and why is he not doing this procedure. Only the best is good enough for our baby, not one of the best.

At 0900 a strange looking man to say the least came walking towards us and introduced himself as Mr Mark Danton (who we would later refer to as God).  A sudden feeling of dread came as he took us to a side room and sat us down about to explain what was going to happen.  He explained that Ruaidhri had a condition called Tetraolgy of Fallout's with Pulmonary Atresia. He told us that he had three out of the four of the fallout's and that the pulmonary atresia was another condition but they were both connected.  Wow so he had two things going on and not the one that we had though.  So what does this mean for him.  He explained that the procedure he was going to do was common and he had done it many time.  Ruadhri was going to have a BT shunt put in which would help the blood supply to his heart and his lungs.  Ok so now he is throwing in the lungs now as well for good measure. He drew us a picture (tried to at least)of what he heart looks like and what it is missing and where the hole was and how where the shunt would go.  This was a lot of information coming our way and all I could do was sit and nod.  Lee seemed relaxed about what was being said and seem to understand and get his head round it far better than me.  All the while he held my hand and never once let it go.  Then the bit that hit me like a brick, the part where he says like any surgery things can go wrong.  Wrong, what wait a moment you are meant to be one of the best, why are you telling me this.  You should be telling me that nothing is going to go wrong that nothing ever goes wrong and you don't make mistakes.  It's at times like this I wish I could take my ears off and put them in my pocket.  So we listened some more and then he handed Lee the papers so sign and that was it.  As I sat trying really hard but unsuccessfully not to cry Lee took my hand and kept saying it was going to alright this guy knows what he is doing. He shook our hands and left, we went back to see our little tubster and the flood gates opened. How could I stop them from taking him, how could we make him better without him going through all this. Was it really true that he really did need this to stay alive.

Then the anaesthetist came, they put gas bottles of the frame of his incubator and said that they were ready for him.  I asked that his bear stay with him and they said not a problem. They told us that we could walk down with him but we would have to stop at the theatre doors.  I felt sick, I wanted to run away, I couldn't stop the tears from pouring down my face, wasn't even much point of trying to be brave now.  Lee put his arm round me as we walked round the corner down the long corridor to theatre(which for some odd reason seems to be the coolest part of the building) then everyone stopped.  We were here we had to say good bye to our baby boy and told them to look after him and with that they took him through the double doors and we were left standing.  Lee cuddled me so hard, I didn't want to move from this spot, I wanted to wait here until he came out and it was all done.  Lee and me both stood crying.  What do we do now, how do we pass the time, he took me by the hand and we started to walk back the way we came and headed to the canteen, with yet another promise it was going to be ok...

 

The dreaded phone call

The phone call that every parent gets told to wait for it's the one to tell you when surgery is going ahead.  It's the only phone call in the world that can turn a reasonably balanced stable human being in to a blubbering shaking wreck in 0 to 60 seconds flat.  The call where by you spend five minute's afterwards walking round your house wondering who has stole all the air as you can't breath and wonder what your meant to do next, think god this is it, nothing is going to be the same again. You feel sick, dizzy, like your heart is going to burst out of your chest, you cry but your not sure why.  You want to grab a bag and put everything you own in it and go there and then.  Yes it is possible to have all these feelings at the same time.

And breath.

That was me on Sunday 29th January 2012 late in the afternoon after just getting in from seeing Ruaidhri. After five day's of being told that it was going to be tomorrow if felt like tomorrow wasn't coming.  Well now it was that tomorrow.  What do we do now, I had no idea what to pack or for how long for, do we take clothes for the little man.  My head was spinning.  This really was going to happen now.  There was no-one telling me now that this was a mistake.  For the first time in five day's it was very REAL. Tomorrow we would meet the man who we would have to put all our trust into, a stranger.

That night we packed enough clothes for a couple of nights, as we weren't sure if we were going to get a room at the Ronald McDonald house which is a house that parents get to stay in for free whilst their children have surgery.

The next call I had to make was to my mum to tell her what was happening and to talk to Poppy.  It had seem like such a long time since I had seen her.  All I wanted was to cuddle her and have her close to me. I know that it was best not to keep having her go back and forth and I know that she was being looked after, but I just wanted my baby girl.  

It's funny how detached you start to feel.  I knew Ruaidhri was my baby boy but with not having the first few day's with him and Lee being there to bond with him I felt like he didn't really need me. He was happy with the nurses and was settled and content.  Poppy on the other I hand I knew that she would want me. Everyone was telling me once the surgery is done you will have plenty of time to bond with him.  I wanted it now though.  I spoke to Poppy and tried hard not to cry.  She sounded happy at my mum's with my brother's there, why wouldn't she they are family after all.  So I spent the rest of the night restless and feeling very numb, it seemed neither of my children needed me at the moment.  Yes this is crazy talk but that is what my head and my heart was telling me at the time.

I felt in one more person told me it was going to be alright I would scream, what do they know, has this happened to them.  Answer was no but I suppose they tell you what they think you want to hear.  Everyone wanted to know the In's and outs and I had no answer, all I knew was that it was open heart surgery on my baby who was 5 days old and who should be at home with me right now.  If one more person that afternoon told me he was in the best place, and the Dr's know what they are doing, I was ready to shout back well he isn't in the best place because the best place is at home with me and of course the Dr's know what they are doing they work at the bloody hospital and they don't just let anyone do open heart surgery.(even just reading that now makes me cross).  But apparently you have to be nice to people as they are trying.  They are trying alright my bloody patience, and these are mainly family members, the people who claim to know me the best, so why were they not being their usual blunt straight to the point self, where were the sarcastic comments and being told I was a drama queen.  That's what I needed to hear not all the crap that was coming my way. It was like they were to scared to tell me what they really thought and how they really felt in case it upset me.  The fact was that all this tip toeing and being nice was too much and felt false.  I wanted my dysfunctional family and friends the ones who have never held back from saying what they thought.

So if they felt too scared to tell me what they thought should I be equally as sacred of what was coming???

Handbag Essentials

After only a few day's I soon came to learn what you should always have in a handbag or man bag.

To cover every eventuality:

Water is a must as not all wards have water coolers and the heat can become uncomfortable, and the more water you drink the less likely you are to have a headache at the end of the day.  Although been warned the more you drink the more you pee.

A bag of mints.  Not only will they keep you feeling fresh but also help to take away any after taste from what ever lunch(not sure if the word food can be used) you have had in the canteen. Although should you drink the coffee in the canteen then I am yet to find a mint or chewing gum strong enough to take that after taste away.(do be careful how many you eat as you may find they don't agree with your stomach, lee found that out)

Book/kindle/ Magazine.  Yes there is a lot of waiting about and I made the mistake very early on not to have either at hand and ended up reading every leaflet that was in the waiting rooms and the wards.  You may not think you will be able to take anything in but you would be surprised that you do, even if  you just stare at the pages it's still better than what you could be reading.

Deodorant is a MUST.  Please people we are all in a hot hospital for the same reason this is not the time or the place to let hygiene slip, and we all have to share the lifts. There is nothing worse than getting in a lift and having to hold your breath. I am not saying this to be vain I am saying for the good of those who you will come into close contact with. It doesn't matter how many times a day you shower or how clean you think you are you will still end up at some point in your day smelling of body odour, sweat and hand gel.

Lip balm for men and women.  For some reason the air in a hospital seems to not only be hot but dry and there is nothing worse than trying to be upset and cry about what you are going through and thinking my lips are really dry and starting to pick at the dry skin that wasn't there yesterday. Don't do this as it makes it all far worse..Please do not do what I did and put the hand gel on them OUCH is all I can say about that..It seemed like a good idea at the time.  Do not buy the stick lip balms as they will melt with the heat, and if like me you automatically put it in your pocket the out come will not be a pretty one.  Use tubes or little tubes.

Sandals/flip flops. There is nothing more un-comfy than sitting at a bedside for 8 to 10 hours a day in a pair of boots and thick socks.  Yes it may be winter outside but inside not so much. It is worth having a pair at hand so that you can at least try and be comfy for some of the day.

Foot Spray, if you are going to take a change of feet then please spray the ones you take out of boots and socks.  It's a bit like the deodorant thing.Not everyone is a fan of cheese.

Pocket Tissues (soft ones) You will probably already know to have these at hand as you will spend a lot of time crying and blowing your nose.  Also have an emergency pack, there are a lot of people using the toilets in a hospital and especially weekends you may find there is a slight toilet roll shortage, and you have enough going on without being caught short.

Wet Ones these are great should you get caught short in the loo, but also as the day goes on it you start to feel like all the dirt and germs are making a home in your skin.  They do freshen you up a bit.

A Cereal Bar just for the sugar hit as come late afternoon you will start to wilt.

A Jumper/socks you will need this when you leave and also it may be hot in the ward's one minute but with a flick of a switch by a maintenance man who has decided it's too warm it will be Arctic conditions.

A phone charger, there is always a plug somewhere you can use. You will want to keep everyone up dated on what is going on throughout your day and maybe just even to get out for some fresh air or to get decent food but you will almost certainly want to ring someone or text someone and there is nothing worse than having a phone with no life in it.  This will be your life line to your family and friends or just the key to keeping you sane.  This would be the one item that I would say is a must.  I knew that if I wanted to talk to my little girl and just to say hi and love you that I could do that.  No-one uses pay phones and lets be honest you don't know who has breathed on them...

Pen and Paper, should you think of something you want to ask but the right person is not about write it down.  I was great at thinking about all things I wanted to ask after the event and wished I had written things down. "No question is a silly one if your thinking it" is what you will no doubt hear a lot.

This may seem a lot for a day at the hospital but trust me you will use all of the above and you will also add your own additions.  For those who already have children you will be masters at getting as much as you can into a handbag so as not to take a nappy bag with you any more, it almost becomes a competition with yourself to see if you can get that little bit more in without having everything burst out.  For those of you who are not used to this it may be wise to buy a ruck sack or small suit case on wheels...It's all worth it.

For me the best thing is travel size accessories they are the best and don't take up much room.