Saturday, 30 April 2016

The longest wait.

A brave lady who I met via the wonderful world of Instagram @heartwarriorwill has recently opened up about how hard she is finding the wait for her son’s surgery is. This is something I know all too well. I suppose it one of my biggest regrets in how I dealt with this at the time. I look back on those 6 months of waiting for Elijah’s op date and although we were very lucky in having our son home with us they were so tainted.
Tainted with the feelings of uncertainty, anger, resentment, denial and anything else that was thrown into the mix for good measure. It’s one thing to deal with your son needing a potentially life threatening operation, it is quite another to try and cope with the fact you know this is coming, but you do not know when. We should have counted ourselves lucky we knew Elijah needed to have surgery within the first year. This is when the success rate for the op is at its highest. Normally it is in the first 6 months.

Elijah was a very well and healthy little boy and we should have been happy he did not need the surgery sooner. However, it doesn’t work like that, you do not think you are lucky. I was clearly in a spiral of depression, and at times denial. It wasn’t until we went down to Great Ormond Street for Elijah’s first pre admission I even acknowledged the fact that was something really wrong with him that only the surgery could fix.

Elijah at 6 Months

We celebrated Elijah’s half birthday still not knowing when the surgery would be. We had begun the process of liaising with the Cardiac Office in Great Ormond Street but because he was so well, after a surgeon’s meeting it was looking more and more likely that he would be having surgery at around 9 months. Another three months, of not being able to make plans, not being able to tell work when I would be back. I have to say my work were amazing, they said I would always have a job waiting for me. They made it so much easier, but I did feel like I didn’t even know if I would even get to go back. We didn’t know how the op would go, or how long the recovery would take.

I made the snap decision one day, I had enough. At times I thought I didn’t even want him to have it. Deep down I knew this would save his life, he would die without this. I couldn’t face any more uncertainty, I needed us get on with our lives. I was in self-destruct mode, at times mine and Greg’s relationship became very strained. I was clearly depressed, not really eating, or sleeping and living in a negative world where I was convinced my son was going to die. I have an amazing group of friends, some who I have known since I was 12 or 13. I felt perhaps at times I was not the easiest friend to get on with.
Trying to enjoy time as a family
I was very selfish and self-consumed with what was happening. I couldn’t shake the depression or mind-set I had got myself into. They stuck by me, even when I was miserable old cow, even when I cancelled on them, or only spoke about what was going on with us. They were patient, understanding and even though I didn’t know it at the time they were the reason we got through this. I decided one day to call the Cardiac Office and put Elijah on the cancellation list. I didn’t even ask Greg before I did it. It means we would be sent an appointment for pre admission, we would go down have all of the tests and checks and come back home.  The tests would be kept on file, and if there was a cancellation or space we would get a call and go down for the surgery.

It felt like this way I had asserted some sort of a control over the situation. To gain control of our lives again. To become me again. It turns out we didn’t have to wait that much longer. We had a surgery date of 2 weeks later just before we were due to go home from pre admission. The one thing that I was in denial about for all those months, then suddenly wanting more than anything was now a reality. The minute we got a date, a real date I broke down. It was real now. It was happening. We spent the next two weeks getting ready for our lives to be spent in hospital for who knows how long.
Elijah's bag ready for London
Those 2 weeks were the longest and the quickest of my entire life. I felt conflicted one on hand I didn’t want this to happen, on the other I just wanted this to be over. I tried to deal with this on my own, however at times I couldn’t help being so overwhelmed it would just spill out. Trying to be normal on playdates and that you were okay ended up with me crying my eyes out in the middle of the park saying I was so scared he was going to die and not knowing what to do.  Friends and family coming down to bring him presents and wish us well, normally ended up with me upstairs in the bedroom crying and Googling surgery procedures and survival stats.
Playdates in the park
Looking back, I know that I should have been happy and made the most of the time that I had Elijah at home with me and making memories. But doing that felt like I was doing these things in the event he didn’t make it through surgery. That it was for show. I spent so much time being angry that it was happening to us, resenting others that didn’t have to go through this all at the same time of self-destructing. I think I tried to self-destruct to punish myself as I secretly blamed myself that it was my fault he had to go through this. It also gave me some control back over the life I clearly had no control over what so ever.
Sea Life Centre Adventures
I couldn’t enjoy those first 6 months, or if I did then I was soon reminded of what was happening. Yes, I could have handled it differently and it is only now 12 month’s post-surgery that I have clawed my way out of the depression and anger and really began to process how I really felt. But more importantly I have acknowledged and accepted why I felt it at the time.

So many people would say, ‘count yourself lucky’, ‘it could be worse’, ‘stay positive’, at the time this is not want I needed to hear. What I needed to hear was that my son would survive. That I would see him grow up. That I could be a ‘normal’ mum. There is so much pressure in these situations to slap a fake smile on your face and put on a front at the same time of saying, ‘I am bearing up’. Why? I don’t know. I think this was just one more thing that I felt shit about. T

he guilt for feeling this way, for not trying to think positive, for not enjoying the time we had, for not being a happy and wonderful mum. Instead I was emotionally unstable and going through the worse time of my life. I wish I had just accepted these feeling instead of trying to pretend they were not happening. At the time you are in a spiral you cannot get out of. It has taken me 12 months to get a new perspective and process this. Do you know what ? Yes, it took me a while, and yes at times I get drawn into those feeling again but that’s okay. I have accepted it.

Waiting, waiting, and more waiting

No one can tell you what you are supposed to be feeling, if you are feeling it then you are feeling it for a reason. Having a child that needs a lifesaving operation and all of the uncertainty and waiting around is one of the hardest things that anyone could ever go through. We all handled things differently.

For me I didn’t handle it that well. I was however tried to be the best mum I could be to my son at the time, I made sure is was as strong and healthy as he could be for surgery. Yes, it could have been different, hindsight is a beautiful thing.
Coming to accept my feelings of the first 6 months and the long wait.
But do you know what I made it. We made it after the longest wait of our lives and it’s made me realise that I can dare to hope again.

Wednesday, 27 April 2016

I don't like YOUR child.

So here goes, as many of my work colleagues know I have a guilty secret. It's one I am slightly ashamed to admit but there. I read the Daily Mail online. I love it. The pointless articles on 5 stone cats, the bad spelling and grammar all at the same time as feeding my daily stalker obsession of the Kardashians. There it is I have said it.
Even Kim cannot escape the meltdown.
In particular I have a good on perusal of my secret shame at work whilst eating my sandwiches Greg made me the night before. I came across something that made me and another mum colleague stop and have a good old chin wag about. This then in turn led to me sending it to my fellow Mum Bestie. A sign of something blog worthy me thinks.

It was about a lady who reported on Mumsnet of all bloody places that she didn't like her friends child and should she stop hanging around with her friend? Or doesn't want to meet her when the kids are present. It then caused an uproar and divided the readers of Mumsnet and Daily Mail, that one it is not really politically correct to say you don't like your friends kid, and the writer is a callous old cow, or that she was congratulated by the child hating minority of readers.
The day to day emotions of my Damien run high like me but with added PMS.
The original post advised and that the Daily Mail successfully regurgitated her friend had two kids under three and one of them was abit of a threenager. She was demanding, she threw tantrums, she wanted everything now, she wanted to be carried everywhere, the other younger child gets slightly less attention due to the behaviour of the older one. So far as any mum would realise she has described the normal everyday behaviour of a toddler and indeed one with a younger sibling.
This wonderful friend then goes on ask; 'AIBU (am I being unreasonable) to think friend should possibly be encouraging child NOT to behave like this and avoid friend because of it. The screaming is hard on the ears.'
Do you think your friend wants to deal with a bratty toddler in public?
Don't you think she is slightly more concerned about her two kids and what everyone else thinks of her never mind her so called friend about it being hard on her ears?
Did you ever think to ask if she needs a hand?
If you could take the younger one for a few hours and let her have some alone time with the toddler, as she obviously craves attention?
Have you ever offered to take your friend out to give her a break and some adult conversation?
As a mother you would probably be surprised to hear I am not offended with this lady saying she doesn't like a particular child. I can understand some kids are little shits. The ones standing at the top of the climbing frame yelling BELLEND in some poor unsuspecting girl's face. I sometimes don't really like Elijah when he is in full blown Damien mode. If someone said they didn't like my child, especially a friend I may take it slightly personally but hay hoe I am not asking them to adopt and raise him so frig them. What I think I would be more concerned about is what a bloody shit friend this lady has been.
Most toddlers are Damien like.
I love that she didn't know who to turn to in her hour of bloody need so she decided to go to Mumsnet. I am fine with people choosing not to have kids because they don't like children. I find that's more of a sweeping generalisation, and its their choice. I am also okay with the fact that this lady doesn't really like her friend's daughter as she is a bit of a mini Madonna.
Elijah exercised his grumps from an earlier age taking after his mum
However, normally most kids go through the 'terrible two's', (three's four's, five's but who's counting) but they grow up. She was a child once and who knows she may have been exactly the same. But to say that the mum should impose more discipline? Has she ever taken a toddler into Morrisons after they have refused a nap all day and only want to run out of the door shoplifting bananas. NO. Has she ever tried to fold a kid into his pram like a deckchair as his has gone rigid, and doesn't want to stop running up people's gardens. NO. Has she ever had to deal with a kid who crazes and crazes for his Peppa Pig raisins but then lobs them all on the floor. Hell NO. There is not enough reward stickers, 'oh you wait until your dad gets home', 'No kinder eggs', 'No you cannot choose a magazine as you have been naughty', that will stop a toddler if they are on one.
When are they on one? All the effing time. Especially when you choose to go out and take them with you for a nice civilised coffee date with your childless friends. Never mind the fact this woman an unsung hero to even get out the bloody house if you ask me as she has a younger baby as well. For all those lovely people who felt like they could comment on her parenting ability and shortcomings when you know nothing about the family, the little girl or anything other than the bitchy ramblings of her 'friend' I think you are as bad as she is.
He throws a wobbler if I take them away from him
We should not be judging other parents and telling them how to discipline their 'behaviour'. Why? Because they are not our children. My child is my responsibility. He is mine to discipline and raise how I see fit. If I want you to parent my child I will ask you if he can move in. 

I think it is also our responsibility to share parenting tips and hints for those who ask for it. However, a parent should not be judged on the behaviour of a small child obviously displaying the normal traits of being a toddler. They are their own person, and it is no way in any reflection that she is a bad mother. I think she is probably a bloody good one trying to juggle two kids under four with who knows what else going on. If all of her friends are as supporting as this one no wonder the poor bugger is having a bad day.
Regretting his decision and getting angry even though he wanted to sit in the basket. meh.
Even before  I had children if I went out and my friend was obviously have a time of it (and this sound like it is not the first time) I would try and arrange a night out for her, or take a bottle of wine round and watch BGT when the kids have gone to bed with a takeaway. Do you know what I probably wouldn't do? Publically shame her on the biggest parenting website in the world. As everyone is now judging her ability as a mother. Through this article do you know that other than talking about herself she never once mentioned if she was worried about her friend or what she can do to help her.
Image result for toddler tantrums meme
So to the mother of the children my love we've all been there, keep going. Like any mum I see dealing with a stinker of a meltdown; I SALUTE YOU. As for your 'friend', she may not like your child love, but I would sack her off she is no friend of yours and I think after this your not really going to like her. Heaven help her if she has her own kids.

Monday, 25 April 2016

#MumdayMonday The Heart Warrior Mum

I have been a very busy little bee and have written a guest blog piece for the Too Much Mothering Information series #MumdayMonday.

I am the Heart Warrior Mum.

Please go over and check it out, and while you are there check out the other great posts from this wonderful lady!!!

click here to go to

Friday, 22 April 2016

The one with Elijah's heart surgery.

We were back. April 22-28 2015, a year ago this weekend. In just two short weeks since we last went down to London. We had to go down the day before and check in and have another blood test. As all of the forms had been signed last time, we were out again within an hour or so. Back to the same family accommodation, in a different room and with a lot less luggage. Something felt different this time, although I didn't want to believe it was going ahead in the event it was cancelled again, deep down I knew it would be.
The morning of the surgery
I knew how I would feel as we had been through this all before. I didn't want to go out for a meal so we ate in the hotel room watching ch5 rubbish after Elijah went down in the travel cot. Its odd that through the whole pre admission, cancelled op and the actual operation I can remember what shit we watched on TV and what we ate for tea that night. One of those weird things that just sticks in your head. Sort of like when you remember what you were doing when you hear a celebrity you liked has died.

I took the same tablets, at the same time in the hope I would be able to sleep. Before we knew it we were bathing Elijah ready to be taken across the road. Again, he wasn't allowed anything to eat or drink. He was in such a playful mood that morning. He was booked in the first slot that day for surgery. I packed enough milk, food and nappies in the event it would get cancelled again.
Ready to go across for surgery
We were the first ones outside the doors to the ward, even the nurse (Doreen again bless her) hadn't arrived. The doors were unlocked and we were showed to a bay. Doreen told us it was going ahead. This was it, Elijah was changed into a gown that was far too big and once again given the all clear. The surgeon came down to see us and I panicked and asked stupid questions. Kindly, they reminded us of the chance my son was going to die. Thanks for that, after the constant reminders and the turmoil I was going through I think I got it. Elijah was watching Mike the Knight on C Beebies as someone marked his chest in black pen.

Then it was time. I thought I was going to be sick. We carried him up a level, my head was swimming. We were ushered into a room, I don't think she had to but Doreen came and stayed with us too. The surgical team were all there and we were told I could hold Elijah as he was put to sleep. He could keep his dummy in as he sat on my lap with the mask over him and he slowly closed his eyes. They took him off me and placed him on the table. They gave me his dummy. They took my baby, I broke down I couldn't even kiss him as they wheeled him away. Doreen and Greg had to carry me out of the room. I didn't know if I would ever see my baby again, well, happy and healthy.
I wanted to have a pic of his chest before the surgery.
It took a good half hour to try and calm myself into some sort of presentable state. Greg seemed so calm but I think he was hiding what he really felt and tried to keep it together for me. Now Elijah was in surgery we would get a call once he was out. Normally it takes 4-5 hours. We had to go and sort out accommodation for the time we were down there. Strangely, I had to leave. The compelling feeling I needed to get the hell out of this hospital. The hospital where my child was being opened up and operated on. The hospital which would either end or save my son's life.
Elijah a few hours after surgery
We decided after sorting out everything that we would walk. We would walk to a fixed point and back again. I remember it was such a nice day, the sun was out, it was warm and there were tourists everywhere. We walked from Great Ormond Street to Buckingham Palace and back, we watched the changing of the guard, and we got to Buckingham Palace. We must have looked like a normal couple walking hand in hand in London. No one knew that actually our son was having open heart surgery.

I think we got back to Great Ormond Street at about 13.00, we needed to eat. I was living of coffee as I couldn't face food. No sooner as we got back we got the call. He was out of surgery, it went well. We couldn't see him for another hour or so but they would call us when we could. Relief filled me like it never has before. Could I dare believe that my baby boy was going to be okay and this was over?
Elijah was on the Cardiac Intensive Care Ward and this is where he would be for the fist 24-48 hours. From all the reading I had done I didn't know what to expect he would look like. I expected him to look a mess, but when I saw my baby he wasn't. Although he had a breathing tube, he looked like my baby. My baby that I grew and carried for 9 months. That I gave birth to, and raised for 6 months. Something changed in me, right at this second. I don't know how or what but it did, all of those months imagining the worst. He was okay. My maternal instinct took over, I asked how I could help, how I could make him comfortable. I wanted to know everything that were doing. Greg however, finally broke down. He couldn't cope with seeing Elijah who was still out of it lying there like that. He had to leave. I couldn't go and comfort him, I had to stay with Elijah. I just had to. I couldn't leave him.
The incision mark was small, skinny and basically had a plaster on it. The only thing that really frightened me was the chest drain. Three plastic tubes were stitched into his chest and carried out the blood into a box filled with water on the floor at the bottom of the bed. It looked like there was so much blood coming out but was assured this was normal. He was on morphine (enough to knock a horse out) but the nurse kept laughing as soon as he heard my voice he was turning his head and trying to wake up.
I spent the next few hours at his side on the ward. There was a lot going on. He had one to one care and was in a room with 4 other patients. The nurses were lovely and explained everything to me. Things were going really well. He wasn't even on a breathing tube now. He was still bleeding out of his drain quite a bit so they gave him plasma and this seemed to stem the flow. I busied myself bringing him dummies, teddies, blankets it made me feel like I was in control and I was being a mother.
Dad hugs, pretty out of it still
We were not allowed to stay in the intensive care ward overnight so we had to sleep in the shared accommodation we had down the road. I think we may have gone for a walk to get something to eat. I took some tablets and after calling the ward to check on Elijah and I actually slept.

As soon as we woke up, I called the ward and we got dressed and went straight there. The bleeding had stopped nearly all together and it looked like the drains would be taken out soon. This means he would be able to be dressed. He was barely even on any medication, all this just 24 hours from coming up from surgery. We couldn't believe it, he was doing so well. At times even the nurses were surprised. He opened his eyes, and held our hands. I made Greg find a book shop so we could read to him even when he was asleep. I was also getting some weird looks reading Hannibal Rising by his bedside. I let Greg talk me into going out in the evening for a meal when the nurses were on watch with Elijah. It was good to get out but my mind wasn't too far from Elijah. I remember us arguing one night and I have no clue what that even was about. Emotions were high, I still was in shock with all of this.
Only a few days after surgery
We had begun to get a routine of the day, and then on the Sunday we were told Elijah was well enough to be taken to Bear Ward. This was amazing in three days he was off every medication, except Calpol and Ibuprofen, he had every tube, his chest drain removed and was eating and drinking milk again! Elijah was still not quite himself but he just had major surgery. I remember Greg saying he was worried Elijah may never smile and again and that he was broken!
Dressings were off.
Bear Ward was slightly different and there was not one to one care (as I found out even less on a Sunday) but we adjusted and began to hold and cuddle our little boy again. This was however quite a feat and he could no longer be picked up under the arms and instead had to be scooped up. One of us could stay in a sofa bed next to Elijah but we decided it was best as he was cared for throughout the night we would stay in the flat. The wards are so busy, noisy with the machines and constant people I knew we were better getting a full nights sleep and going over first thing.
Still smiling the sign of a true heart warrior
Monday, when the Doctors and Consultants came round again after the weekend, things looked good, maybe too good as we would later learn today. Tests were done, things were monitored and it looked like after just 4 days after surgery WE WERE GOING HOME! Except the dozy cow doing the ECG didn't listen to me when I said he had just had another test and was quite agitated. He wouldn't lay still so they got a inaccurate reading. Cue us no longer going home (after might I add we had told everyone and even arranged a bloody lift and packed), as he needed to be monitored for 24 hours with a device on his chest. As I not so politely told them the next morning when the results were back and in fact normal, he was agitated at the time.
First night at home
After 5 of both the slowest and quickest days (even the consultants were shocked) we were coming home! We had lunch in the hospital restaurant for the last time. We packed our bags. We left Great Ormond Street with our son the heart warrior in his pram and as a family again.
Yeah I had open heart surgery 6 days ago, so what?

Wednesday, 20 April 2016

I have written a guest post which the lovely Mummy Somniac has featured on her blog!

check it out here!!

Have a great day!! xxx

Sunday, 17 April 2016

Living with a toddler is a bit like living with a wild animal.

 I have learnt a lot this weekend. Including the fact I should not keep fish as I have now killed them all of. Yep, 6 fish in 4 months. That I do not have much patience when tired. That I cannot stand Justin's House, and living with a toddler who is on one is bloody HARD. They constantly need feeding, even though whatever you give them will not be the right thing, they are always are whining, and there sole mission from waking up until they go to bed (and afterwards) is to make sure you cannot get a single thing done. And sometimes I don't really like my child.
So with it being Elijah's OP anniversary (part 2 coming soon) I am a tad on the emotional side as it is (Greg has been keeping me pacified with Galaxy, Bad Girls re runs and Die Hard) but my lord its like Elijah has turned into a full blown little (insert your choice word here) 'darling' leaving a trail of sleepless nights, crumbs and mess in his wake like a herd of effing wildebeest have been through my house. It is like he has turned into a defiant teenager overnight and has stopped listening to a word I say. At nearly 19 months we have hit the terrible twos. Trust him to do it early.
Before I had a child people used to toss this phrase 'terrible twos' about, and I didn't take much notice. But frigging hell they should do an ante natal class on it, to pre warn you its coming! I believe they currently consist of;
*Touching everything he is not meant to
*Throwing everything (including at my head).
*Wanting to live of Jaffa Cakes and Party Rings.
*Terrorising the pets- poor Gingey the hamster was his victim this week by being thrown in her ball on the floor.
*Lobbing all food (normally healthy) onto the floor or sofa.
*Sudden laziness where said toddler cannot do anything for himself including reaching for the cup that is 2cms from him.
*Shouting and screaming
*Climbing on everything and anything and generally trying to brake a bone or give me a heart attack.
*Trying to smash the new TV or any technology in the house for that matter.
*In not such polite terms being a little shit.
Today has not started well, first of all Elijah has decided that his eyes, arms and legs don't work at night time. So when he wakes up in the night and has lost his dummy which is normally under his chin, he cannot possibly get it himself. He will proceed to sit up and crine (cry and whine) until I stumble out of bed to shove it in his gob. He then proceeds to fall asleep straight away. I was up 7 bloody times last night! 7!! Cue a grumpy and slightly less tolerant mother today.

In the three short hours he has been up, there has been much noise and destruction in the house. Like a herd of bloody wildebeest have stampeded the house. A whirlwind involving Barny's, bananas, blocks and Mr Tumble. I have just sat in part of Nutrigrain he has kindly left on the sofa. He is now trying to push Thomas the Tank into the new TV after chucking an entire orange on the floor. The tantrums as well, half the time I don't think he even knows why he is throwing a wobbler but my god when he does, he does. I love my child, I really do more than anything, but that noise when he kicks of... starting with a whine and then slowly upping the pitch into a harpie wail,  I am not ashamed to admit I can't stand that noise. Not one bit. It makes me want to put him outside in a box with a 'free to a good home' sign on it.
Counting to ten does not work. Jesus it does not. Don't tell me too or I will kick you in the crotch. When you are sweeping up yet another crushed in biscuit from the floor, or picking your toothbrush from the bedroom floor AGAIN after you told him to leave it alone makes me want to SCREAM! Now and again during a normal day you may have the odd kick off or wobbler. But this weekend it is something else, it is ALL DAY!! I am half the woman I was on Friday. I am traumatised. I want to hide in the cupboard under the stairs and eat cheese. I feel like I have been kicked in the face by those little punching men toys.
I am trying to figure out what has changed by lovely little cherub into a demon although I have for sometimes been thinking the signs of him being Damien from the Omen have been there. Now, Elijah is a clever little bugger, no idea where that came from. He is quite forward and is currently having a vocab explosion, he is picking up new words everyday. I am trying so hard not to swear, so far it's not going too well. He is learning songs, I am quite proud to say he knows the whole of the Swashbuckle Salute complete with actions. He has learnt the word 'NO' and what that means. He knows if he does not want to do something. Or to sound cute by saying 'OH NO' when he has cocked the TV up with the remote again. Physically he is learning new skills as well, he can now walk down the stairs which is great until he tries to grab the stairgate and swing on it like Tarzan. Elijah can now climb on pretty much anything including standing on the coffee table and laughing like an evil genius when watching Paw Patrol (Damien!).
In the midst of clearing up food, watching 'PEPPE PIG' for the 100th time and trying to stop him dive bombing off the sofa this weekend has killed me. Mentally and physically. He is officially a toddler and a handful of one at that. I sort of wish they would invent giant toddler cages we could put them in... bit like a hamster cage with a wheel. It means my house would be a lot cleaner. I have to say it is very exciting seeing him learn so many new words and skills, but I do miss the little blob he used to be. It was a lot easier then!
This is where as a parent I am conflicted, you love the little buggers to death but after using your 'MUM VOICE' for 2 straight days and feeling more like a zoo keeper than a Mum you sort of a little bit want to shove them in the garden and hide in the shed until Monday when you go back to work. Then they do something sweet like say goodbye to Mr Maker on TV that you then think oh well who cares he has just thrown a bit of cheese on toast at the cat?
I think as a NICU Mum and the fact he has gone through what he has, I am a bit of a soft touch. I probably let him get away with a lot more than he should, and have created a rod for my own back. That was my choice, I think I feel too guilty. I am so grateful he is okay, I am. However  I am also human, and a normal mother too. Toddlers are more unpredictable than a hormonal teenager. I am worried he may have my temperament as I have been described as Bambi on oestrogen before. One minute he is wanting to fall asleep on me and I am sneakily smelling his hair.... the next I want to list him on GUM TREE as he has kicked me in the gut repeatedly.
So living with a toddler is really like living with a wild animal;
*Neither are toilet trained
*Unpredictable sleeping patters
*Erratic behaviour.
*Eats everything they want to, disregards what they don't anywhere and everywhere.
*Can turn viscous when provoked (like asking them to get their shoes on).
*Does not respond well to instructions (like don't put your finger in the plug).
*Takes things that don't belong to them and hides them in weird places.
I could go on and on but Elijah is currently standing stuck in a toy box he has climbed into and his wailing like a banshee. He is so high pitched I think he is setting the dog off next door. This is very much interrupting me adding an advert on Gum Tree.

Friday, 15 April 2016

Do you remember that time we went all the way to London for heart surgery and instead only stayed for a Pizza Express?

Elijah's OP Part 1

Sitting here and looking at the photos it feels like just yesterday. The feelings are still raw, slightly dulled but still fresh. It has now been 12 months, 365 days since we first went down to London for Elijah's Tetralogy of Fallot repair. We had been waiting for this for 6 months. 6 long tainted months. Now it was here. We had the date. We were ready, well as ready as we could be.
I've been told again and again not to dwell on the past. To not sit there thinking, this time last year we were packing for London, this time last year we were taking him down for surgery. With the anniversary coming up I cannot stop myself thinking like this. The emotions are still there eating me up. It's hard to explain that although I have a healthy, funny and clever little boy that I can still be sucked into the past again, but I can remember everything about this time last year.
We had known the op date for a couple of weeks beforehand as I decided to put Elijah on the cancellation list. The reason for this was that his surgery date wasn't looking like it would be for another 3 months and we couldn't go on like this.
We couldn't do anything, I didn't know if I could go back to work. I couldn't even tell them a rough date. It was something that was hanging over us, and we couldn't shift it. So, if we went to Great Ormond Street and have all of the pre admission tests done, blood tests, ECG etc ready for when a spot would come up, we would get a call and he would go down for the op. However, turns out we had a surgery date before we even went home after pre admission.
As soon as we had the date, I cried. A lot. We had been waiting 6 months for this, it's all I wanted for it to be over. But now the date was here, I didn't want it. It was too real.
The next two weeks went in a flurry of emotion, worry, arguments, packing and a full blown breakdown. Family and friends came to visit Elijah, bringing him cards, presents but it was almost like a goodbye. I couldn't cope with people being there, I was convinced my son was going to die. I spent my time locked away reading and re reading the surgery details, and survivor stats. I scoured the hospital list for the things that we would need and spent hundreds of pounds getting ready to pause our lives and go down to London.
We were told all being well Elijah would be in hospital 7-10 days. He would go down for the op, and go onto The Cardiac Intensive Care Unit and then be moved onto a recovery ward. We would be put in a flat down the road when Elijah was in Intensive Care and then one of us could stay next to him on the ward. The worry about leaving our lives and dealing with all of this hundreds of miles away added to the whirlpool of emotion I was feeling. Greg had to book annual leave from work so it left me to deal with most of the organising, speaking to the Cardiac office, packing our bags and arranging it with my very lovely and generous friends to take us.
There was so much to think about, the tube journeys, when Elijah would eat, did we have enough toys to keep him happy, did we bring enough clothes, what was the hospital accommodation like we were staying in the night before? The fact we had to wake Elijah in the night for a last feed as he wasn't allowed anything past 6AM the next morning. Would he even sleep in the room? Would we? How would we cope with this?
After a hot and struggling journey on the tube after my friends dropped us at Epping (we majorly over packed and had 2 suitcases, 1 kid's suitcase, a weekend bag, my handbag, Greg's backpack, and a stroller) it was a NIGHTMARE. We had no where to put our bags and we hadn't eaten in hours and been up since 6. We went for something to eat as we didn't have to go to the hospital until 14.00. We must have just looked like a normal family on a family trip. Not that in a matter of hours my son was having open heart surgery.
As he had already had pre admission tests, we only had to sign consent forms and have some more blood tests. A lovely Nurse Doreen (who we had met previously) was with us again and did everything she could to make us laugh.... but Elijah was doing this himself by weeing all over the toybox when he was being weighed.
I signed the consent forms, I signed permission that they could cut open my son and 'repair' him. The surgeon came to see us, a fleeting visit in which we were kindly reminded of the risk of death. Had I just signed my son's life away? Someone came to ask us if they could have our son's Thymus Gland as this is something that gets removed and normally thrown anyway. We agreed, I had also previously donated my cord blood too.
Then we were free to go, with the instructions for the morning. When he had to start fasting, when we had to be here. It was surreal. We went over to the family accommodation and checked in with Greg going for a walk to find out if there was somewhere we could eat.
We decided to go for a meal, something to mark the evening. It was odd we were walking around London as a 'normal family' but nobody knew why we were really there. A couple of ladies looked over at us feeding Elijah in his highchair they must have thought we were all so happy. They even smiled as if to say I know how you feel when he started having a tantrum. A normal family. I wanted to scream at them, this may be our last meal as a family. I wanted to be normal. I didn't want to have to do this, or my son to have to go through this. It wasn't fair.
After a couple of drinks and tea at Pizza Express I was at my breaking point. We went back to the room and Elijah went to sleep and we tried watching some rubbish program. I couldn't relax so took some tablets and I think we were asleep by 8pm.
The room was hot, Elijah woke early and I felt so bad he couldn't have a bottle when that's all he wanted. We had to get him ready and take him over the road by 7.30AM.
This was it.

I felt sick to my stomach.
Doreen came to get us to change Elijah into a gown. She said that there is a chance the op might not go ahead. They were waiting to hear the outcome of a heart transplant as it takes precedent. Elijah's op would be cancelled. As time went by, a doctor came and looked over Elijah and listened to his chest. Elijah had the all clear.
But, it was not to be with 30 minutes to go before he would go down we were told Elijah's op had been cancelled. The heart transplant was going ahead. We were told we could go. Go where? Do what? We had travelled hundreds of miles for our son to have this and we were going back home. My child was not 'repaired'. A child had died to give a heart, another would live as they got a heart but my son had not had his operation. I felt hollow.
How on earth could I do this again? We had to get home, we had only brought enough food, milk, nappies for one night as the hospital would provide them after surgery. We had nothing for Elijah. The nurses were lovely and brought us milk while Greg went out to call our friends and get nappies, food etc. We would need to get home.
As the hospital cancelled the op if we purchased the train tickets home they would reimburse us. We had to pack up and come home. To wait for another surgery date. To carry on feeling like I was drowning in this, I didn't think I could go on with it. I almost thought about saying we shouldn't have the surgery. It was needed though, it would save his life. So we waited, waited like we had done for 6 months for another date. Ready to do the exact same thing all over again.

We didn't have to wait long. Two weeks. We had to wait another two weeks and go down again. Go down the day before for blood tests, to stay in the same hotel accommodation and to go over in the morning again after fasting him through the night. I didn't even believe it would happen this time. I couldn't face the fear of it being cancelled again.
I made Greg take the time of work while we waited, I couldn't go through it on my own again. I felt like I was literally going insane. We spent the next couple of weeks spending time as a family. I needed him there. I didn't have this last time and it helped. We also knew how much to take, how to make the journey easier etc. My beautiful wonderful friends were on hand once again to take us down. They were there for us through all of this in a way I can never be grateful enough for. I knew how I would feel and I got some more tablets to try and cope with those feelings when we had to go down again.
So there it was, a trip to London, a cancelled op and a Pizza Express.
There was still so much for us to go through with our Heart Warrior, yet never once did he stop smiling through all of this.