Gastro

We first met Andy the Gastroenterlogist in the summer of 2012 we had been refereed to him after Laura was at a loss as to what to do with Ruaidhri sickness.  He was a very casual man who liked to use people's first names(that's when we found out Dr Knight first name which for some reason isn't what we thought it was) and like to sit back in his chair very relaxed,he like to have his hands on his head when he was thinking and keep pushing his hair back.  It was a floppy kinda style that I think he had probably had since he was in his teens and has just never changed.

We had our first appointment and he wanted to know the In's and outs of Ruaidhri sickness and all issues stomach related.  He had said that Laura had no idea where to go with him, as everything that she had tried nothing had worked.  So we had a chat and he decided the best thing to do would be for him to have an endoscopy which would mean a few nights in hospital.  So far we had done great with not having any over night stays in the hospital since he got out in January.  He explained what would happen and that we would go onto 5a as he was still a cardiac baby.  Ok sounds simple I thought, Andy's enthusiasm for wanting to get to the bottom of this was great.  He believed that his sickness would only stop after he had his repair,(Dr Knight strongly disagreed, turns out they were both wrong).  The plan was to put him to sleep and put a camera down his throat and down into his stomach so that they could see if there was any functional issues as to why he wouldn't eat and was always being sick, they also wanted to do a Ph test which would tell us if the level of acid in his stomach was too high.  He said the whole thing would take just over an hour, that was going to be easy enough then after the last wait that we had.

That October we had our first none heart related stay in hospital, Ruaidhri was as happy as ever and really didn't seem to phased about being back on the ward, it always amazed me that he hated the hoover at home but when he was in hospital it never once bothered him or the buffer machine. That night he had been prepped so that he was ready to go in the morning, they would try and do him first. There is nothing worse than waiting all morning only to be told that you are last and then come later afternoon being told that you are not going at all.

The next morning we were ready and waiting, I was asked if I wanted to take him down to where they put them to sleep, which I did but I thought it was going to be like the last time where I left them at the doors. Nope not this time, I got to take him into the room and hold him and with that they slowly started to put the gas mask on him to drift him off to sleep.  Oh  my I certainly was not ready for this, he was crying and I was cuddling him the tears just started pouring from my eye's, I couldn't see anything through tears, no one had told me I would be doing this.  The smell of the gas was making me feel sick and light headed, and with that off to sleep he went, i put him on the bed and was walked out so they could do what they had to, it was hard to leave him and walk away, I kissed him and told them to look after him.  It had really taken me a back, I was not ready to do that. I cried for about 5mins and took me about the same amount of time to get over the shock.  By the time I walked up to the canteen and got a coffee and calmed myself down, rang people and sent some text's I got a phone call telling me that I could go to recovery to get him.  That certainly was quick, there he was, I got to hold him and carry him back to the ward.  He had an extra tube in which was attached to a machine this was to trace the amount of acid in his stomach.  It was so good to just cuddle him, he did still smell of the gas but I didn't care he snuggled in and I was loving every moment.  We walked back to the ward where Andy told me that they couldn't find anything functionally wrong with him, which was good but still didn't answer any questions.  So we were still no further forward with what was wrong.  It would come about that the results of the Ph test would be fine and normal as well, so still no answers.

The next step would be a barium test which is where they would put a dye in his tube and they would x-ray him to see how it went down and it would high light his bowls and stomach and show any problems if there were any.  Although the way that all the other tests had been going I was hopeful that there would be nothing. This would only be a day visit to the hospital and we would be home as soon as it was done.  My little man was far from happy about this as I would have to hold him down on the x-ray table while they x-ray ed him, the table would title to help the dye move. I got to see the screen and watch the dye move it was pretty amazing to see, and to see his insides.

After a week we went back to see Andy who told me that his stomach was in the wrong place, it was sitting at a 90o angle, the big part of his stomach that should be at the bottom was in fact on the top.  I was not expecting that, I really thought it would come back and say there was nothing wrong.  He had a plan, the plan was to turn his stomach which would involve surgery, but he wouldn't do this until he knew when he would have his heart re-pair, so off to Dr Knight I went to say right we need a time frame.  This was in June 2013 by this time, almost a whole year after we had been refereed to gastro. The other side of the plan was to have a peg put into his stomach so he would be fed straight into his stomach which may help sickness, although it was a simple (ish) op again he wanted to wait until after his repair so for now we were to just carry on as we were.  It did answer a few questions and I felt like we were really starting to get somewhere at last.

Sadly we never got to go through with Andy's plan, but what we did learn after his pm was that his liver hadn't grown fully which would also explain a lot, and when I saw him a few months after Ruaidhri died I told him this and he was shocked and wanted to look into it more.  There was no reason for him to look at Ruaidhri liver as it hadn't shown any signs of not working properly.  He had no reason to look outside the box. But nothing can take away the enthusiasm he had for wanting to sort the problem out and his all round niceness.

It's all about numbers

From the moment that a heart baby is born you learn very quickly that their lives are ruled by numbers, it's all about the number's baby, and the hospital make sure they drill that into you, to the point that you freak out when you don't get the numbers you need and become a bloody wreck.

The first lot of number's and by far the most important numbers are the saturation numbers, this tells us how much oxygen is going round the body.
Oxygen saturation is a term referring to the concentration of oxygen in the blood. The human body requires and regulates a very precise and specific balance of oxygen in the blood. Normal blood oxygen levels in humans are considered 95-100 percent. 
 However in a heart baby it is less.  Ruadirhi's would be 86 and that was after his first surgery.  For him that would be good, in a normal healthy baby this would be bad.  We were told that the lowest they would allow his Sat levels to drop would be 60's.  As he would grow the number would get lower the more active he was the lower they would drop, this is when he would start to sleep more, and you got it we would keep an eye on how long he slept and how many sleeps a day he was having.  These numbers will be one of the main things that keep them in hospital, if they can't keep the numbers up then its help from oxygen for them.

Weight is also a big issue.  They need to be at a certain weight for surgery.  Should a heart child not reach the weight needed this will delay any repairs or major surgery needed.  Even for minor procedures they need to be of a health weight so that they have a better chance of holding their own and deal with the anaesthetic better.  At the start Ruaidhri would need to be weighed up to three times a week until he was at a place that was acceptable and could maintain slow weight gain. This also is a factor that will keep a baby in hospital if weight gain is poor or should they be loosing too much too soon.

Feeds is another set of numbers, its all about increasing and calorie building, they need to be able to tolerate a certain volume of milk and keep it down, we found the more we put in it seemed even more was coming up.  If they are unable to take the volumes required to grow then there is a knock on effect, no weight gain or a loss and low Sat levels can also play a part in this.  Feed times as well become a great obsession.  At first he was on 3 hourly feeds, then it moved to 4 hours after about three months of hardly any sleep.  Then came the 12 hour night feeds, and two big feed over 2 hours a day.  For these feed we had a pump, we had to set that at the levels of how long we wanted it to go over and what the volume of milk was.  Should a feed start late or run over that would ruin my day and cause a freak out, all be it a minor on but still it annoyed me.

Medicine is a huge part and one that I used to freak out more about.  The main one for us was aspirin as the hospital told us that this would thin his blood and also stop his shunt from blocking, if that was to happen that could result in death, yes the hospital need to be frank about this.  We had a set time that he would get his aspirin it was a 7pm it was one of the only meds that never made him sick. The more weight he gained would mean upping the levels on feed and also on aspirin, and any stomach medicines that he was on. Due to the fact he wouldn't swallow these all had to be given down his tube, so we would have to make sure we never ran out of syringes, all different sizes for different medication, we would also have to remember the number of his feeding tubes, and yes as he grew the tubes would grow with him.

You learn the phone number for the ward off by heart in case you need some advice or you think something is wrong. You start to remember every date that your child goes in for a hospital stay or procedure, you remember all the dates for clinic appointments some times you could have three clinic visits a month, you count the months until the next big surgery is due, when you roughly get to that time you count every week after that.  You become consumed by having to know numbers and this all starts in the hospital, they drill it into you that much that you start to think if we don't get the numbers then the worst will happen and the world will end. 

I could be asked any question and I would have the numbers ready to reeled off, I was secretly always pleased with myself when I could tell them a short history of his Sats and milk volumes and weights, it became second nature to the point that I would be annoyed if no one asked. What I did learn was that due to the invention of the mobile phone and not having to remember people's phone numbers any more that at the start I would write everything down on a calender or always made sure I had a scrap of paper at hand and a pen, but as time went on I was surprised by how much information I was able to hold and remember, my brain had stopped being lazy and was working over time. The down side to having to remember all this information was that it had started to take over every conversation I had with people.  This became the only topic I would talk about and know off by heart, I had stopped having normal conversations with people and it became very medical very quickly, even with people who had healthy children, it seemed that I was only ever having conversations about what the future would possibly hold for my baby boy, about when we were next due at clinic, if his feed had gone up etc, some days I would even bore myself. But this is how life was and is for many heart parents.

If I could give one bit of advice to anyone going through the same is that yes the numbers are important but don't let them take over like I did.  I had stopped looking at my baby as just that a baby and he became a little bundle of numbers at the start and I had become that draw in by the pressure from the hospital at the start that I lost the first 4 months because I dreaded not getting the numbers right and him not meeting targets.

Less pressure equals more love and cuddle time.

The Dietitian

Having a dietitian can sometimes fell like butting heads a lot of the time, this is what it was like with me and Laura for the first few months but we eventually got there and our weekly up dates became more like chat's and a catch up with a friend.

When we left the hospital Ruaidhri had been on normal baby milk SMA gold, that wasn't to last for too  long while Laura tried to work out what was causing the sickness.  Because we would have to monitor Ruaidhri weight at the start 3 times a week it was becoming clear that he was loosing weight, the sickness was taken a lot out of him. So it was bye SMA hello infatrini high calorie milk.  It came in little glass bottles and looked like condensed milk, smelt much the same as normal baby milk.  So this would help him put back on the weight that he had been loosing. So weight gain was starting to happen sickness wasn't going, it was now every feed either during or after the feed.  So maybe it was reflux so Laura had suggested using baby gavinscone this would thicken his milk as well as settle his stomach, but after only a few days we had to knock that on the head as it had turn the milk too thick and it was taken double the time to go down his tube and would often block it up.

After two months it was time to change his milk again, Laura thought maybe he had an intolerance to milk so she changed it to Infatrini Peptisorb which stank.  It smelt like the bacon frazzles you get in the shops, but oooh my on the way up it melt like old chip fat, as far as the milks go that was probably the worst, and it you got it on your clothes you would have to change as you would smell it all day and as the day went on it would get stronger.  Sickness never improved time for a change after 6 weeks.

Time to say hello to Neocate, Laura was hopeful that this would work, it covered all allergies and was as broken down as baby milk could get, she had used it on other babies and it had worked.  Ruaidhri had other ideas on this.  Because it was so broken down it was like water, and would come up like water. Because it was too thin we would get a milk thickener which might work.  After 4 weeks he was loosing weight and still being sick.  We needed a new plan.

Laura would ring every Monday and we would ask about his weight and what volumes he was on what he was able to tolerate (which was nothing) how many vomits he had, had and we would try a new plan.  After changing milk 4 times it was time to stand my ground and tell her it was time to go back to Infatrini as it didn't matter what milk he was given or how many milk thickeners he was still going to be sick, but with this milk at least he would put weight on.  She agreed although there was an age limit on it and due to the changes of milk we wouldn't have too much longer on this.  It was ok though as there was an Infatrini that was for older babies, great I thought we are now getting somewhere.  The bigger he got the more calories he would need and the next stage milk had the same calories as the baby one so he would need a calorie powder to help with weight gain and calories.  This plan would work the only down side was it all had to be delivered and would come in boxes so again we would have storage problems, the older he got the milk went from little glass bottles, to bigger plastic ones to 500ml plastic bags.

Ruaidhri was at the age where had he been bottle fed we would be trying him in solids, so we thought why not.  What should have been a fun time experimenting with foods finding out what he liked and didn't like, which would have work should he actually want to hold the food.  He had no interest in holding food and would back away from it, yogurts where a no go as he would gag and make himself sick.  It was starting to stress me out, how can something so simple like feeding your child be so hard, he needed food to have energy and to help him grow, so if he had not interest in eating or drinking how was this going to happen.  He was too clever for his own good, you could give him a bottle empty and he would suck the top of it put a small amount of water in it and it would be chucked on the floor or at you. I think we must have tried everything to get him to try and eat, he would like to suck his sick blankets so I would dip them in yogurt and he would move it to a bit with no yogurt.  The more tricks we tried the more wise he came to them.  In the end we would just sit him in his high chair every meal time and give him what ever we would have. It took him until he was 11 months before he would touch food, and with that he was fussy about what food he would touch, jelly was a no go he would freak out if you gave him that he wouldn't play with it like other children might he would tip the jelly out and chew on the bowl.  I was really starting to think that he would never eat, then we got hit with the fact that it was looking like we would have to face the fact that he would be tube fed up to about the age of 4.  Wow we had gone from being told it was short term to long term, but we wouldn't give up.

The day he sucked the middle out of a chip you would have thought we had won the lottery, so straight on the phone to Laura, she was happy it was progress, so there was a new plan, the new plan was nothing just given him the same as poppy and if he touch it, licked it, swallowed it, it was still all good it didn't even have to be that healthy as long as he enjoyed it and took to it. Knowing this took the a lot of the stress out of meal times.  Some day's I could feel myself wanting to burst into tears and will him to eat something, this was a task that I had taken for granted.  I never thought feeding your child would ever be an issue why would it, it was his heart that was the problem.  Although that was true no one told us of all the other knock on effects that would come with this.

Once I had stopped stressing and just gave him the food and if he ate it he ate it, I stopped keeping notes of milk volumes, how many times he had been sick, how many times a day he would eat something or gag he started to enjoy food more as well.  It is true that they say kids pick up on stress, but once we had got into the frame of mind that we would let him lead it all seem to make life easier for everyone all round.  Even Poppy would share her food with him and she would sit next to him and show him that food was tasty and how to enjoy it.

I told Laura that we would keep in touch once a month to see how he was doing and we even agreed that his weight should be done once a month, this was a massive step and took the pressure off no end.  It really is amazing how easier you become hooked and obsessed with numbers and volumes, i kid you not I had a diary that I would write everything in and keep notes of everything, even down to how many dry and wet nappies he had, had.  I would take pictures of his sick when there was blood spots in it, should his poo change colour or for whatever reason was solid(which never happened very often) I would take notes and yes a photo.  You might think this is crazy behaviour but this is what you get told to do.  You make it a task that must be done right down to the letter or number.  It got so bad that I would try and measure how much he had been sick, the lengths you go to to make sure your child is where they should be and the weight that they need to be for surgery are unreal.

I once asked Laura why they all made such a big thing about weight and volume and it was simple they would have to be well and of a certain weight too be able to be ready to go for surgery as and when, yes we were given a rough time line but things change children change and we had to be ready and he had to be weight happy.  There has to be a way to get the message across to parents with out added to the crazy and adding the pressure.
  I would hate weight in day sometimes his weight wouldn't move and this was just as bad a a loss to me, it would mean that something needs to change so we would look back on how he had been had he had a growth spurt, had he been unwell was he more active, we were constantly trying to find reasons and answers.

Once Lee and I decided to not be so up tight about the volumes and weights and Laura was happy for us to do it our way it was better for us all round.  We started to enjoy our family meals times better and Poppy snack time, there had to be more to life than numbers....

Sickness

Yes it's not nice to talk about sick and if you are eating then I would stop reading now or just man up. This part is just little stories that still make us chuckle now.

Ruaidhri like a lot of tube fed children was prone to sickness, just how sick he would be would become apparent as time goes on.

It didn't seem to matter how quick  or how slow you fed the boy it would come back up a lot faster and with some force. He could be in his cot on his side and be sick with such force it would go in between the bars and the only bits that would land on his pillow was the dribble bits that where left. He had perfected his aim and his timings. He wouldn't put his hands in the bath but didn't think twice about putting his hands in his sick.

Poppy had been fussing over him and I kept telling her that he had just had his milk and that he would be sick, but she carried on tickling him.  Next thing up came the milk all over poppy, and some did hit her face. She just sat still bless her she couldn't believe what had happened, once she had gotten over the shock she cried, I couldn't move for laughing, which made her worse.

We went shopping in Livingston one day and I had taken three changes of clothes well sleep suits with me, I was ready and prepared for him.  I wasn't however prepared for him to go through those changes as quick, thankful his last vomit was out side next so in I went to get some baby grows, the women said would you like a bag, No thanks I would like you to take them out the packet though as I need them now. She looked a tad confused until she saw the little gem sitting in his buggy with his nappy on legs in the air smiling away like he was having a grand old time.  

It was always fun if you were holding him and he was about to blow.  The good thing was you knew by the change of colour in his face that it was coming.  There had been one afternoon when I was holding him (his back on my side him facing forward) and I felt a warm dribble on my hand, that was it time to move into action, bend him over ever so slightly so that when it lands it would be clear of my feet, winner it had worked SPLASH.  It was like he would try and see how far he could get it to land each time.  I cleaned his mouth and he was have a smile, my mother in law was cleaning the floor and as I went to take him into the front room, an unexpected vomit had happened but this time it had landed on the mother in laws hair.  I could do anything for laughing and just as I was about to move him more came. I should tell you that she has long hair that is always in a pony tail, so she was unable to stand up as the pony tail and sick would end up down her back.  I could not move for laughing, and there was no way you could be cross as his smile just melted your heart.

His first Christmas we went to London, this was something me and my mum had started when Poppy was little, we would take her to see Santa.  I was unsure however weather to take Ruaidhri due having to make sure I had enough milk, bottles, feeding sets and of course his sickness was an issue, what if he was sick on the train??? Well the good news he only had small sicks great I thought this is going well, then it started we arrived at the hotel and woooosssshhhh up it all came, it was like someone had turnt the tap on in his stomach, I think the whole day's feeds had come up. So by the end of the first night he had gone through almost 8 changes of clothes, thank Christ there was a laundrette round the corner.  The next day was time to see Santa, after we had taken his clothes to be washed.  I hoped with all my worth that we would not throw up all over Santa at Harrods(the heat was another factor to add to him being sick).  It was roasting in Harrods and we had to wait to see Santa, anyway we came we went and all with out his fed coming up to say hello to Santa, great I thought maybe it was just the journey that had made him a bit yuk.  Oooh how I was wrong, so wrong. After Santa we made our way back to the hotel, every year we would stop by and see my old boss so this trip was no exception. We got to the George pub and I took Ruaidhri out being the proud mum I was ready to show Pat what a little tubby he was.  Pat was out but his partner Amanda was (she does not like children in any shape or form, even Pat's) she asked why he had a tube in and I told her about his heart and that's when it happened.  Chucky exploded. I had been cradling him because he was tied, and just when I thought he was nodding off I saw a warm white fountain appear and a very disgruntled Amanda just looked on.  I calmly explained it was part of his condition and that was him done now, (my coat that day had started as black) as she handed me some blue roll to wipe my coat there was more, it was all down my jeans, all over the seats and floor in the pub,  it was like he was going for a new record, with that I put him back in his buggie and took myself to the loo to try and wipe some of the milk away.  It was gross, the  more I wiped the worse it got and because he was on a high calorie milk with an added calorie powder it stank. I would have to try and leave here like it had just been a normal visit and not show how uncomfortable I was with cold stinking milk vomit all over me.  We said our good byes and walked back to the hotel,being sure to walk up the back streets as to not be seen.  It was a cold afternoon as well and I could feel the sick setting like concrete on my jeans, my mum couldn't stop laughing and Poppy kept saying he cant help it mum. The boy had done good he had exceeded anything like he had done before.  Off to primark it was for me that afternoon to buy a cheap coat.  The nights that we had left he made sure he would leave his mark on the hotel room, if you want to know how clean a hotel carpet is get your child to be sick on it.  You could see the clean patches where I had been cleaning the sick away, and god knows how many clumps of hair, just thinking about it makes me itch. But it was all worth it he got to see Santa and was as good as gold on the way home, the only sick he had was a small one and landed on a little dogs head.

When he had started to walk and would be sick, he had mastered the art of throwing up standing up, if we were in the high street people would always ask if it was a stomach bug so i explained that he had a heart condition.  People would stare at him because it did look painful and uncomfortable as his tube would poke out of his nose and his face would go bright red. It was the opposite, he would feel so much better after a good chuck up, the smile on his face would tell the world that.

It would take us up to a year to find out what was causing him to be so sick, but the real truth came when we got his pm report.

It's Ok to say I'm Not

After talking to women who knew how I had been feeling I thought right it's time to take things in hand and take back some control, and that's what I did.

I rang my health visitor and told her that I was ready to see the Dr and tell her that the crazy had set in.  I should explain that for a little while now my health visitor would come round and give me a sheet of questions to answer and she would add them up and if the number was too high I would have post natal depression.  I called this the crazy test which she laughed at but told me that lots of women get it its normal blah blah blah blah.  I had always been a firm believer after watching my sister in and out of depression for years on and off pills and knowing what sort of person she was that it was very much a self indulgent thing that i was determined never to give into and have.  I had tried for 4 months to kid to myself that I was normal, I partly had been digging my heels in because my mum kept telling me I should go talk to some one or see a Dr and a Dr I saw at the beginning was too keen to hand me pill's.  In my eyes pills were not the answer and I was even now trying to avoid being on them.  A Dr in the March had given Betta blockers for anxiety which I had refused to take because one of the possible side effects has been drowsiness and I told her that, that could not be an option.  Even she could not understand why I wouldn't take them, if she didn't get it then who would.

One of the questions on the crazy test was"do you still laugh at things that happen" my reaction was to write what the fuck is there to find funny about what me and my little family have been going through the past four months, but i refrained and answered not as much as i used to.  I mean who really decides what questions should be asked to see if you are coping with life in general.  I would answer as honest as I wanted her to know.  If I was to answer how I really felt I think she would have sent me to the Dr months before.  Part of the reason for not being totally honest with the answers was that I was ashamed, I was ashamed to admit that I felt like I was loosing control of what was happening around me.  She would tell me that I was grieving for the healthy baby that I never got and expected to get.  That didn't sound right to me, grief was something that came with death wasn't it, at the time though I started to think that maybe she was onto something.(having and still grieving I can now say she was wrong).  I was too scared to let myself get close to him in case the worst happened, this was no way to live life and was far from normal behaviour.

The Dr asked me why I was there, she knew why I was there my health visitor had already told her, so I simply said the crazy has set in and am getting fed up with the palpitations and the arguments with myself.  She looked at me like I was nuts.  She looked confused and decided it would be more fun for her to make me go into details, and with that I told her that I could easily wined myself up, If my washing was not put away that day I would get up in the middle of the night to do it.  My main problem was that i would stew on what people had said to me days before and this always happened at night.  Before I knew it I was ready and wanting to ring whoever had said what and give them what for, instead I would just carry it on until the next day when my mood would not be a good one.  So of course her reply was well I think we should look at giving you a little help in the form of tablets.  Great I thought I have just sat here and told her that this was not something that I wanted to do and was willing to try something else.  To that she said well I think we have passed that stage so here's prescription and we will look at you getting you a gym membership at the complex that might help.

With that she said if there's anything else I can do you know where I am.  WHAT WHAT, help you haven't helped me you have done what I didn't want. She had given me an anti depressant(i really really had those words) so off I went to get them.  Needless to say I had an argument with myself on the way home that I let it get this far.  I was also cross at Lee for letting me get this far without saying something to me, but that had he said something he would have been wrong.  The past few months he was unable to do anything right, even if he breathed too loud at night I would imagine myself putting the pillow over his head, I never did instead I settled for jabbing him in the back with an elbow which I would always have a little smile to myself after wards (am smiling now at the thought of it).

I got home and Lee had asked me why I had gone to the Dr's I just said about stuff, what stuff he asked, just stuff leave it at that.(see he could do no right). I took my little white bag with my crazy pill's in it and hid it like some dirty secret that I wanted no one to know about.  I told one person and that my friend Vikky, I told her that they had finally given me crazy pills, she just said welcome to the club everyone takes them.  There was no way I was telling my mum or Lee, this was something that I was not proud of and I wanted to hide it as much as I could.

My mood did improve and so did my night time arguments, the  anxiety had calmed down alot so maybe the pills where the right thing to do at the time.  I still had anxiety attacks from time to time but I started to see that maybe life wasn't the big black cloud I had thought it was.  I started to relax into life and started to enjoy my children, it felt good to finally cuddle them and feel guilt free.  After a little while I told my mum I had been on them and she wanted to know why I hadn't told her,the answer was simple I didn't want anyone to know that I was failing at the simple task of looking after my family that I wasn't coping as well as what everyone was expecting me to.  I kept everything in and refused to talk about how I was feeling or how hard day to day living was some days.  Then out of know where I would be at my mums and would break down in tears, and tell her that none of this was fair and its really really hard work.  She would sit and cuddle me and tell me that I should let people help me instead of refusing help all the time.  My problem was that I had not wanted help from anyone, and yes that included my husband, I thought that if he helped me he would see it as me not coping or a weakness, I know now that this wasn't the case but that was how my thinking had started to go.

I had to start making up for the time that I had lost over thinking things too much, and try and have a normal life for me and the kids, I had to stop thinking that everyday was going to be the last and enjoy what i had, after all it was more than what others had.
The hardest thing I found was admitting to myself that it was ok to ask for help and not to bottle everything up(well not as much) and that it's ok to not have some good days, and it is most certainly nothing to be ashamed of, its just a process of feelings that you have to deal with and over come to enjoy what you have.

Don't get me wrong the crazy does still creep in now and again some days more than it should, but I am more inclined to say deal with it, I have had enough shit to deal with, its a part of who I am now.

HMFS

HMFS is short for Heart Mummies for Scotland and this is a group that was set up by a heart mum who has created something amazing.  It's a group of women who are all in a similar position and have helped me no end, and I have built some amazing friendships with these women they should never sell themselves short as they all have so much to offer, if you were to get the chance to be in a room with even just a handful of them you would see how strong and amazing they are, they certainly as a group are not a force to be messed with.

I briefly mentioned this group at the start and now is the part of my journey where they truly did help me, they also helped with the relationships with both my mum and Lee in very different way's.
It was May when I turn to these ladies for help and advice, I hoped that they would have an answer for me or even just help me to get the answer I wanted.  It wasn't a heart related post that I put it was I really did think I was going made.  I was having panic attacks, I wasn't sleeping any longer than 4 hours a night, I had to be in charge of everything and should I not be I felt my world would end and that would be that.  I was scared to open up to these ladies as I had no idea what response I would get if any at all.  My mum's view on me by this time was you need to pull yourself together and get on with things and appreciate what you have and sort yourself out or get help. If this was the advice that this women would give me then I would do just that, after all they were all going through stuff so if they could do it I would.
And with that I posted what I was feeling how rubbish I felt and that no-one understood the fears and worries I had about my little heart baby, I didn't have to wait long till someone posted and told me everything I was feeling  was normal, and other people will never get it unless it has happened to them.  Before I knew it I had all these wonderful women telling me that it's ok to do to the doctor's and say look I'm a bit on edge and that I might need some help.  Not to be afraid to say this is happening to me and I am entitled to feel the things I do. I sat and read through all the comments that these ladies had taken the time to write and all of them were positive not one of them told me I should just get on with it.  I sat and cried I felt like a weight had been lifted off my shoulders that I wasn't a freak or the loony that everyone was telling me that I was turning into, but that I was a mum of a baby with not just a complex heart by feeding issues too, each and everyone of them had been through something similar if not the same.  I was normal after all and not needing put into a padded cell that I was starting to thing that I should.  The kindness, care and love that came from these people who didn't know me or knew what a mess I felt I was were telling me it would be ok, and that we are all here and on the same page, just trying to get through each day the best we could without it all falling apart but also being very aware of what could happen.  There was no sugar coating with these ladies, I liked that a fact was a fact and nothing else. Yet for all they were very matter of fact the positive attitude that came from each and everyone of them was amazing. Why had none of the nurses in the hospital tell me about this group at the start.  It would have been the one thing that they would have gotten right.
I managed even to find out that there were heart mum's in Falkirk, great I thought I wasn't the only one in Central Scotland that had one.  Turns out it didn't matter where you lived in Scotland and even some in England that the problems with the local hospitals and health centres where the same.  I wasn't the only one having to battle for them to get medication right.
After that day whenever I felt like I wasn't coping or had a fear about something I would go to them, I shared not just my crazy bits and fears, I shared the good things like when Ruaidhri ate his crisp and when he started to walk, they were and still are like a family.  I used to talk to my mum about what was going on with these ladies and would start to call them friends, she would listen and make comments then one day she said how can you call them friends when you don't know them..But that was the thing I did know them, I knew them better and their children than a friend who I had been friends with since high school.  When they were sad I felt it when they would share good news with would warm my heart and put me in a good mood for the rest of the day.  I loved seeing what was going on with their lives, I sometimes felt like I was stalking them, I started to get and send friend requests from them and we would have our own chats.  I told my mum she should join so that she could see just how great this group was, after a while she agreed and when I saw her after she had joined she truly was taken a back by how day to day life was for everyone, she now believed that I wasn't being a drama queen and if anything I had held back from just how hard day to life could be some times.  She was starting to understand she was starting to see that this wasn't going to go away.  I knew that she didn't want to thing of anything bad happening but she was seeing that children were going through far more than we were at the moment but that could be us at some point.  That was one of the best things I ever suggested she do.  I told her that what i said on there would be said and told her the same I wasn't going to start to hold back now, on there she wasn't my mum she was just another lady who may or may not comment. It also helped me to understand her way of thinking as well, she was watching her daughter and grandson going through this fight, I had never thought about it like that before.
As the months past I got to meet some of these ladies, at clinic appointments or if we were on the ward together. Then when Ruaidhri went for his last surgery I had told them all that I was expecting it to be a long one and they all sent their love, how long it would be I would have no idea.  They all wished the best for his recovery and some offered to come visit if they could and if I needed anything they would drop it by for me.  Such simple acts of kindness from women who had their own families to deal with.  They would all tell e how pleased they were for us when we got to bring Ruaidhri home after six weeks, they had given me strength during those six weeks when I felt like we werent getting any where or when it was two steps forward ten back.

Then came the morning that I would have to write a post that would break my heart, and I know would bring the fear back to some of the families none the less there was no easy way to say it.   I wasnt ready to tell my main fb page just yet but I had to tell these ladies, with that I told them that my happy amazing little boy had gained his wings.  Even reading it I couldnt belive it, it hadnt been expexcted and he had been dischagred with a good bill of health.  They all said how sorry they were and how shocked they were to read it.  I had some beautiful cards from them and such nice private messages from them.  They also helped Poppy one lovely amazing friend sent a guardian angel that I gave to Poppy and told her that her brother would always be with her, another came to see me and gave me the biggest cuddle ever and bought a little boy holding a golden heart.  I felt bad for making her cry..lol..Poppy now tells me every now and then that Ruaidhri had a golden heart.  The comfort that this has given her has been no end, and she still always talks about the heart mummies and tells me that she wants to write to all the heart babies when they go into hospital. They have all done such lovely acts of kindness which has helped through what was and still is the hardest thing I have ever had to live through they have never turnt their backs just because I dont have a heart child any more.  They are the reason that I have decided to write this blog. They have still have such faith in me and still tell me everything will be ok, just different.  Although my heart journey has ended they still dont mind that I want to keep up to date with how their little ones get on.  Although I dont post as much on the page I know that when I do they will still be there and be the same awesome ladies that I have come to hold so close to my own heart.

Let's bring more people to the party

If you thought that we already had enough people to deal with from the health profession the list was about to get a  whole lot longer, and I would loose count of how many times I would relay information and details of Ruaidhri condition and what treatment he had, had so far.

So the list started out as the following:

The cardiologist, who agreed with very few people but knew almost everything

The heart surgeon who was always right and agreed with even less people but knew everything and some

The community nurse who would always go back and ask for advice because they weren't cardiac trained and didn't know as much

The ward 5A because if all else failed I would pick up my bat phone and call for help if they didn't know they would find out

The dietitian who had her own plan and as nice as she was, was running out of ideas and things she knew.

That was the list of people we would communicate with on a regular basis for the first four months, but Ruaidhri has decided that we did not know enough of the staff from the NHS and wanted to challenge some more people so lets welcome:

The Gastroenterologist (gastro for short) who was a lovely man, could never agree with the cardiologist and some times agreed with the dietitian but knew lots about what he needed to know

The Speech and language therapist who depending on which district they were from would agree with everyone or no one and frankly we are still trying to work out what they knew

The cardiac liaison nurses who were nice, but when you phoned you were always faced with the answer machine so that would lead you back to the ward

The Secretaries of all the above because they would know when you would see most of the above next but knew nothing of any medical help it was just another number to add to the list.

Lets not forget the children's ward at the local hospital who frankly were only good for putting the feeding tube back in as if it was anything they would ring the ward at yorkhill 

The receptionist at the health centre who thought they had a medical degree but knew nothing it was a flight to even get the right medication

The manager of the health centre, as after more than a few mistakes we complained and hoped that would be the end of it, but nope she became a firm favourite every few months

Evening writing this now am worn out. Each and every one of these people would do their job to the best of their ability and knowledge.  Although some times no, most if not all of the time I would repeat myself and find myself wanting to back my head off a brick wall.  Out of the list above I think the only people that would ever be in the same room at the same time who would agree at the time would be the gastro and dietitian which made for a nice meeting and always cracking conversation about the above.

These people although had to do a job I became to know very well it was like a friendship was growing, these people became apart of our day to day life, to the point that when I rang the dietitian she would know it was me as soon as I said hello.  They all knew everything there was to know about our boy from his heart right down to his bowels and even the bits in between.

 I know what your thinking if they all knew him so well and all had done their job and way more why did we have the outcome we had, and why am I praising them all in their own fields,(except the health centre) it's because they are all only human and sometimes there are things in life that are bigger than anyone and no one had a plan for those things, sometimes even the best miss things.  They aren't robots, but we were very lucky to deal with and have so many people look after the care of him, he baffled the best.

We got to know each and everyone of them at some level and that in itself has given us more than a few laughs..Its good to know the people behind the care.  Just know that they aren't fighting against you although there are times that it feels like that they are fighting with you, and remember they are human too.

Going Solo

After Lee having two months off work it was time for him to fly the coop and head back down to Yeovil.  The Navy had been great with the time off they had given him but it was time to try and have a normal life and routine.

As we got the end of March and the start of April we sat and Lee planned what weekends he would be able to come home, he kept asking would we be alright, course we would was always my reply I will be fine, the honest answer was I had no idea how I would fit everything in my day.  But if it came to it me and the kids could live in our PJ's, I could do a shop on line so me and Poppy would still be fed and should they feel the need for fresh air we had the garden.  Course this was going to work out.  

So off Lee it was the first time that I think I have ever cried when he has left for work, I think maybe it was because I knew that he was going to be away for a month, that was a whole month of having have eyes everywhere, keep poppy amused, be on tube watch, puke watch (neither of which I see the BBC showing). I could do this I would just have to be mega organised and have a plan, a plan to which we would have to stick to down to the last second. (this was the month that OCD became my new and very unwanted friend and something new for me to deal with). I would however need to grow extra arms.  Ruaidhri was still on 3 hour bolus feeds, which for two people was manageable for one however it seemed impossible, but it had to be done, so I would crack on.

I had a plan in my head and ready to put into action. During the day just before every feed was due I would have a puke blanket to had, a change of vest and sleep suit(the boy had mastered the art of being sick through the mosses basket where it would land was any ones guess) wet wipes, nappies(he could fill them as soon as a new one had gone on, no wonder he was struggling with weight gain), a bowl of soapy water and a towel (it was easier than running a bath every time) and last but not least his milk, syringe, and my mobile phone as you could guarantee as soon as I would start to feed him the dietitian would ring , or someone about his next delivery or about an appointment, and we were good to go.  The good thing was that Ruaidhri weight checks had dropped to twice a week instead of three times a week, but due to the lack of staffing at the medical centre I would have to take him over once a week, which once I had the planned nailed wasn't too much of a drama, unless it pissed down with rain or the medical centre had decided to close for the day and fail to inform any one.

Our night time plan was to get both kids in bed by six Poppy would watch a DVD and I would sit in bed as chucky could be sick at any point of the day.  I had even given up trying to second guess when it was coming, and learnt just to look at his face as it would change colour and then he would blow.  Even Poppy got to know what his puke face was.  Back to the nigh plan, Ruaidhri would usually drop off to sleep about seven which was good as his next feed was nine so I could get a quick sleep in before that.  Poppy was usually asleep by half seven eight at the latest.  I had started to take a change of bedding and sheets to bed with me because I knew at some point he would redecorate his cot.  He was a master and usually waited till the 3am feed to puke through the bars onto the floor and me, every night I would have the same conversation with myself about not having a change of pj's for me and a cloth and spray for the floor.  You'd think after the first week I would have learnt.
The first week or so into Lee being away I was doing good, but then tiredness was starting to creep in and  I was starting to have mornings where I would just want to cry because I was so tired.  The only way to keep the tiredness at bay was not to sit down for too long, so I would keep busy.  When I wasn't feeding ruaidhri or bathing him or changing him I would make sure all the washing was dry as soon as it was I would put it away.  One day I sat down for too long whilst Poppy was watching telly and Ruaidhri had fallen asleep after wearing himself out after an epic sick, and it happened, I had fallen asleep.  Not a deep sleep but all the same, it was the phone ringing that had woke me up.  It was my mum asking if I wanted to met her up town with the kids, well that was an easy answer no.  She had been on at me as it had been over two weeks since I had gone anywhere.  I pointed out that wasn't true as we would walk to the health centre once a week for chucky to be weighed.  It was all too much at the moment to take them anywhere with three hourly feeds, and the sickness, and changes of clothes he was going through in a day.  Needless to say she wasn't for taking no for an answer so I gave in and said I would see her at the weekend.  Which as it turns out was the next day, I had lost track of the day's and my body clock had set itself to feeding times, so I always knew what time it was.  Usually by the time I had cleaned him up after being sick and changed him bum from the never ending diarrhoea it was time to do it all over again, I was getting cross at myself for agreeing to go out now.  I would need a suitcase not a bloody nappy bag, why wouldn't she listen that it really was a never ending circle.  I went up the town and it was a short lived trip as whenever it came to feeding him people would stare, and stare even more when he was throwing up all over the place, and I would have to find a change room and strip him and change him..Even now thinking about going through all that is stressing me out, and mum kept saying stop stressing yourself out.  I wanted to shout it was everyone else that was stressing me out, if you all just listened and let me stay at home like I wanted I would be happier. Mum said that she would take poppy home for the night to give me a bit of a rest and time to try and catch up on some sleep, I would go and collect her tomorrow and mum had said she would do lunch.  That was nice I thought, at least I wouldn't have to try and think of what to cook for lunch, my brain cells weren't a great gift to me at the best of times but where getting worse by every day due to the lack of sleep.  (I did go to mums on the Sunday for lunch and fell asleep on the sofa for an hour).

My health visitor would come round and I would always make a point of putting make up on and making sure the front room was tidy.  In fact whenever I was going out I would put a face on, so that people knew I was doing ok and I was coping.  I think I was kidding myself more than anything.  Everyone kept saying its ok to ask for help, help what did I need help for I was getting through each day and counting them off until Lee was due home.  I hadn't missed a feed, appointment, equipment order, I was on top of his meds, and weekly phone calls with the dietitian, I knew everything there was to know, and some.  The kids were always washed, clean and healthy(well apart from the chd) and well fed.  As long as I stuck to the plan everything was fine.  Be warned anyone who got in the way of my routine and times, the world felt like it would come to and end and that was my whole day, week even ruined.

Would send Lee pictures of the kids and keep him up to date with everything that was going on, and reassured him that everything was good, which it was.  I didn't want him to worry about how I was feeling and much I could cry some days with being so tired as he had a job to do, he couldn't afford to make mistakes in his job, so I would keep everything to myself.  And anyway it was almost the end of April which meant he would be home soon, then I could sleep for a whole day if I wanted (sadly the crazy had already set in and this would not happen).

I was feeling pleased with myself I had learnt how to feed him, and changed his tape at the same time, I had become the master of being able to bolus feed him whilst cooking dinner, I had learnt to shower and dress in five minutes flat, I had even learnt how to time my loo breaks, which mainly involved leaving the door open and having ruaidhri in his car seat, but it was still a plus, I had learnt how to function on four hours sleep a night I was the goddess of multitasking.

More Room Please

What we never got told by any one whilst at the hospital was that Ruaidhri may need some extra equipment on top of all the new born stuff that you need.

We left the hospital with Ruadhri being tube fed, which we were had learnt how to do and we had been given out bag full of spares, what anyone failed to tell us that over the next week or two how much stuff would be delivered and how we would have to find somewhere to put it all. Had it been a few bags full that wouldn't have been too bad, but we had boxes and boxes of stuff, everything from bottles, to feeding connectors, milk, when the front door bell would go I hoped that it wasn't more boxes.

Where on earth were we going to put all this stuff, mores to the point what does half of it do. Then the call came to say that after almost two months of bolus feeding that someone had felt sorry for us and we would be getting a feeding pump, it would arrive within a few days, this I was hoping would be the last box we would get.  Thankfully it came by a dietitian  so we didn't have to worry about getting rid of more boxes, I think even the recycle bin was screaming for a break.  Why had no one told us about all the equipment we would be getting or need for day to day living.(looking back we were one of the lucky ones he could have had far more equipment).  So for the time being our bathroom draws started to over flow with everything that we would need to keep our boy going.  We also had a 

We also had a lot of dressing and tapes, milk thinner, stomach medicines, anti sickness meds(which made him more sick)  the list was never ending.  Then came the letter with all our account details for the company who supplied all this equipment so that we would be able to order what we needed monthly.  Again something that we had not be warned about.  It was starting to look like a hospital with everything that we had around us. But if it meant that Ruaidhri would be right then that was all that mattered.

So now that we would be getting these delivery's on a monthly bases we would have to find somewhere to put it all.  It became like the krypton factor every month to see where I could squash more boxes under the stairs, then we got plastic boxes with lids to keep it all in.  In the end short of building and extra room we made room under the stairs, and the over flow storage would be the kitchen cupboards, should have put open with caution stickers on them, some days you really did take life into your own hands opening them, thank god for child safety clips on the cupboards doors as I think that helped keep it all in.  

We also had to start buying more and more puke blankets as he was using them quicker than I could wash them, in the end I gave up and homed them with the tea towels, it was the only cupboard in the kitchen that had no child clips and was easy reach for Poppy as she became the towel grabber. We were also buying more washing powder to cope with the amount of washing I would end up doing, some days could be up to four washing machine loads, we were also running out of places to dry it all.  Maybe it wasn't a extra room we needed but a bigger house altogether. 

As an extension wasn't on the cards any time soon and moving house was out of the question, we would have to find other ways  to fit it all in.  Ruaidhri started to wear just vests and sleep suits when we were staying in as I could get more of them at one go in the washing machine and they also didn't take too long to dry.  The plan started to work and the rest would follow.