Love

I don't want this to be all about Alfie's medical condition although it is, through necessity a huge part of our lives. We can't avoid it as we have to give him the fullest care in our powers to keep him safe.

It is about a very special, much loved and very much wanted little (OK not so little, really quite large) boy. The love that I feel when he smiles that gummy grin at me is indescribable, it almost hurts. This feeling was slow coming, none of the huge wave all the books say you feel at birth. There was a deep recognition when I heard him cry for the first time, it was MY baby but not that all encompassing thing I was led to believe.

The Bump that became the Beast!

It does have to be said that this could have been the 20 hours of labour, the excruciating pain, the huge number of times I threw up, even when they were lifting him out of me, the numbness (literally from the spinal block), the concern that he had his own birthday and not sharing it with my mum! I know, I always think of the oh so important things at crucial times!

It slowly started to dawn on me how important this little being was to me. It was so odd, all this time to get him and the delays through one thing or another and my great desire to have a baby and his dad only really going through it all for me and he gets the big rush and I get the slow trickle. Not that I resented this, he deserved it and loves our boy more than life itself and I love him all the more for it.

Coming home.

We have been together for nearly twenty years and I think it worried both of us what having a child would do to us as a couple, we had been so focused on the getting pregnant that we didn't really consider that. It was only when we started the IVF that I started to get a bit of a reality check. By this stage Mr Reluctant was so positive and I was full of negativity, totally convinced it was not going to work and if it did what would i do with a baby and would be a hopeless mother. We were going to travel the world when it didn't work (now we will do it with the best piece of luggage in the world), had it all planned I was that sure it would be a failure.

We were due to test on the Saturday, but on the Tuesday I found a test in the cupboard. it had come free with some ovulation tests. I didn't even know it was there, honestly! It just yelled at me all day and in the end i had to give in and there were two lines! On that one and the ...... more I did after because I still couldn't trust the result. I didn't feel the excitement I had the first time, before the miscarriage. We both had to hold back on that, for Stuart until the 20 week scan and for me, well I don't think I ever did. There was so much fear until then and then the pain kicked in.

There were perfect moments it has to be said, Christmas night when Stuart felt our future rugby player for the first time, oh boy could he kick (and still was all the way though labour!). Then the less than perfect, I even have to confess disappointment when we found out it was a boy (that has changed since, I couldn't be happier than with my little boy).

Nothing really went according to the fictional plan I had in my head. It was not going to work, then it was going to be exciting, then a good scan, then it was a girl (thank goodness not, imagine me with a teenage girl!), the nausea was going to stop, it did finally on about the day the agonising pain in my ribs started! I was going to get hugely fat, so upset that one didn't work out :-). I was going to nap and sleep for England, instead of which I stopped sleeping at 20 weeks and found I don't do napping. we were going to have a last holiday in the sun but the pain meant I couldn't fly so Cornwall in the rain it was. I was going to be a complete wimp in labour and swear like a trouper. I was brave, not pain relief for 14 hours and not one naughty word passed my lips, I know miracles can happen!

Stuart was going to be a bit useless, but no even that didn't happen. He couldn't have been more supportive, he cooked all the meals as I felt too ill at the idea of cooking. He rubbed cream into my belly to ease the discomfort and stop stretch marks, he laid 2 floors and friends helped us decorate 3 rooms. He even (reluctantly) gave up on bike trips due to bad timing.

Motherhood was going to be so hard and I was never going to cope, instead thanks to my gorgeous little pumpkin I slept more after he was born and felt better than I had for ages. The worst bits were the over nights in hospital without Stuart at my side but after that it was wonderful. We had our moments, forgetting to make bottles and me loosing the plot thinking I was the worlds worst mother if I couldn't even manage that when Stuart could. Things settled down but then the awful time you have already read about kicked in.

My heroes.

That was when the full impact of how I felt about this little man and the big man that had helped me create him kicked in. The thought of loosing him was unbearable and now in all his plumpness his smile fills my heart and his cries, that that they are break it in two until I can whatever I can to fix it. He is beyond special, he has his wonderful dads laid back nature with just hint (maybe a little more than a hint) of my temper. He is so loved and cared for, he had people thinking of him and praying for and anything else that may work all over the world. I had no idea how much and how many people cared for him and about him and us.

Thank you all for caring about this miracle that is my son.

And Stuart, I couldn't love you more than I do and I pray that I never have to face the world without you at my side as you have always been. Now we have the third point to our triangle of life.

Perfection!

Getting ready for the day ahead.

This is how we start every day, obviously once the Beast has been fed and rested. We have it pretty much down pat now, all part of the daily routine along with bottles, washing etc.

Post bath, pre tapes.

The kit all laid out ready to go for a tape change.

Not quite what we envisaged using the coffee table for.

Alfie all laid out and ready to for a tape change!

Start of a hard day,

End of a hard day!

p.s. please feel free to post comments on any of our posts, it would be lovely to have feedback on here as well as your emails. Thank you Catherine for yours :-).

Back to work we go

Figured that a lot of the blogs about babies and children are naturally enough frequently penned by the Mums. So I thought I'd take the chance to redress the balance and give a Dad's eye view.


Sarah and I spent a lot of time putting off trying for a family, this was for a number of reasons, multiple redundancies meant that circumstance conspired against us so that it "wasn't the right time" a refrain that I'm sure many couples are familiar with. Also life was good with just the two of us and at the time I saw no reason to alter that balance.


If I'd have known quite how long it would take to achieve our little miracle then I may not have been quite so complacent for quite so long, but hey hindsight is a wonderful thing and who wants an easy life.....where's the fun in that.


“May you have the hindsight to know where you've been, The foresight to know where you are going, And the insight to know when you have gone too far” - Irish Blessing


Throughout the fertility treatment, Sarah's pregnancy and all the difficulties we've faced with Alfie's hospitalisation my boss has been brilliant and on the whole the company have been very generous too. I've been lucky enough to be able to be with both Alfie and Sarah for the entire nearly two months we were in hospital. Thanks Craig


So now I'm back at work, albeit working from home. This fortunate arrangement allows me to be available to help look after Alfie, be that tube changes, tape changes, suctioning and believe it or not..............even the odd dirty nappy!


I'll post more as things occur to me or as the urge takes me so please excuse the inevitably rambling nature of my posts....

Busy week in Alfies world!

Well this last week has been a busy one! It started with a lovely day at Nic and Tim's where Nic played Octopull (musical toy) in a far more satisfactory way than we do apparently. She is trying to encourage learning an instrument, particularly the violin. I am happy with this as long as Alfie practices at her house!

My baby boy and Nic.

We finally got the smaller suction unit we had asked the hospital to sort out, a lot of nagging and a nearly 10 week wait and it finally arrived. Was it worth the wait we ask ourselves? I have to admit absolutely not! It is much lighter, 2.9kg rather than nearly 6kg but the layout is terrible, so almost seems more bulky and the noise is unbelievable, rather than Concorde going off in the front room it sounds like a rocket! Then I find out we only have it on trial anyway and even if we get on with it, it will have to go back.

However through a little of my own research and a lot of cheek I have found a better unit that is only 2.2kg and a great layout. I very naughtily contacted the UK branch of the manufacturers (they are Italian) and asked if we could do a home trial even though we are not a medical facility. I explained the problems we were having and they agreed! It took 3 days from the first contact to receiving the unit, which is so quiet and tiny, and being Italian has a rather smart carry case with clowns and other child friendly things on it. It is so small it would fit in his nappy bag if pushed. The only problem is that our PCT have already said that they won't pay for it so we will have to. Never mind, worth it if makes life easier.

The ad from the site is just to give you an idea of what it is like (the little bag on the side detaches with the power supplies):

OB Minivac Unit - Baby Bag

£395.00 £464.13 inc VAT

• Powerful and portable 500ml suction unit which allows it to reach a vacuum of more than 700mbar.


• Fully charged battery provides up to 60 minutes of use.


• ABS anti shock casing.


• Lightweight design - weighs only 2.2kg.


• Internal battery is recharged from vehicle with supplied 12 volt lead.


• Choice of case designs available.


• Price includes nylon carrying bag.

Incredible isn't it, PCT 10 weeks, a bit of nerve and direct contact, 3 days!! What all of this has taught me is that you cannot be a too pushy parent and for all my gobbyness I am not naturally that pushy. Mind, for my boy........

Big boy isn't he? Yes you can say it, bit of a chunky chap!!

The week goes on with Kate and Mum doing their weekly babysit so Stuart and I could have lunch together. This is Stuarts first week back at work, and they are being great letting him work from home, it helps with things like the tape changes and knowing he is there if we need him. I do have to say he is very single minded when working from home and I struggle to distract him! (and I have to clock watch to make him stop at the end of the day!!!) Next on Tuesday were jabs, last set for now thank goodness as they carry their own problems. At this time of year the surgery is a hazardous place, colds can be very dangerous for Alfie. We also have to watch him very carefully after the jabs in case he reacts, his secretions always get worse so very little sleep this last few days! Killer isn't it? Get a fab baby who is easy going and sleeps through and we still don't sleep.

Solids still going well, very efficient. Weighed him (of a fashion!) and he has topped 19lbs at 19 weeks. Tuesday also brought the arrival of Myrtle the kitten.

Hard work all this computer malarky!

She did shy and nervy for about an hour, got bored and hasn't looked back. She is a total nutter who adores Alfie. He seems to be very taken with her too, he has pretty much ignored all the big cats but watches her every move (mind you that could be self preservation). She is the most gorgeous, nutty, loving little creature you could imagine (and Claire if you are reading this she is possibly worse than Aston and that is going some, divine retribution some might say).

Mid week brought bouncing. What you may ask? We tried the door bouncer again and having hated it last time, Alfie loved it this time.

Bouncing!

We also re-tried the tummy time device I got and that is proving more successful. We can't do normal tummy time to encourage crawling as Alfie could fall onto his tube and hurt himself or not be able to breathe so I got a sort of Ladybird turntable thing to strengthen his arms.

pic from catalogue!

It does prove more challenging than I would have thought to get safe toys and games for him.

I also want to mention Thursday, Reuben a young man who is a great inspiration to us all had his trachy fitted which is more surgery on top of many which include open heart surgery to fix 5 problems! What this does mean though is coming off the vent after weeks and oxygen also support for the first time in his life today. It also means the big H..... home in what could be as little as 2 weeks. http://reubenjackdodd.blogspot.com/ Children like him and Alfie show the rest of us up. As Catherine says they could choose to be thoroughly hacked off with people and the world and yet they smile on and enjoy it to the absolute full. We prod and poke in ways that are totally necessary but painful for us to do and instead of tears are rewarded with the most beautiful grin that lights up the room.

Exhausting week!

Friday brought visitors in the shape of Sue and Mandy from work (Lin couldn't make it as her mum is very poorly) bearing gifts. A gorgeous outfit for the Beast from Sue and wine, flowers and choccy from Mandy (most of which have gone already!). It was so very kind of both of them and great to catch up on the gossip. As always when someone sees him after a while there were cries of amazement at his size! The community nurse came too to deliver some bits, forgot the bit that we really needed and gave us some that we really didn't so she will be coming again on Monday! We had to do a tube change on Friday too as Alfie has had a bit of a cold and was getting a bit grotty.

Having sorted a home trial myself for a small suction unit, Jayne the respiratory nurse at Oxford (not our oh so useful PCT) emailed to ask if we would like to trial a small unit. So I am waiting to see on Monday which one she has.

On Friday a young lady, Alice who lives over the road was made very happy by the early delivery of Dobby who became Jasper who then became Frankie, Myrtles brother. We had organised this as a surprise with her mum Jude. She was meant to get him on Tues next week and had been counting the sleeps but as he was doing so well we thought it would be nice if she had him for the whole weekend.

On Saturday we went into town to go to the market to get fresh fruit and veg and then went for lunch in one of the restaurants in the market place, we actually managed to sit out in the sunshine. Alfie is so civilised and behaves fantastically when we do this. Also had to pick up yet more food for him! Eating us out of house and home.

Today, Sunday again was spent getting ready for the respite nurses (!!!) to come tomorrow. I know I should be grateful for respite nursing but it actually makes me quite uncomfortable to leave him with strangers to have time out. I think this is because they are nurses so they are qualified to look after him and this draws more attention to the trachy. To me he is just a normal, healthy and happy little boy who happens to have a trachy that needs looking after. I wouldn't hand him over to nurses ordinarily so why now? Hey ho, we will wait and see after tomorrows visit. They have to sort health and safety stuff! Can't even get away from it at home.

Also he has his second visit to Tim the cranial osteopath, so hopefully that will keep working. Again I hope you have made it to the end of this update.

How gorgeous?!?

The daily kit

This is just to give a vague idea of our days work with the trachy. When the trachy was first put in, it was stitched to Alfies neck and the stoma stitched open with temporary stitches. The ENT surgeon did the first tube change and then Stuart and I had to practice on our own son.

We have to change the tapes that hold the trachy in place and dressing everyday and clean all around the stoma. This is very much a two person job as the trachy is unstable when changing the tapes. we have it down pat now, Stuart does what I think is the worst bit, which is hold the tube in and I do the clean and change.

For my part I think sitting and holding the trachy tube stable is the easy part, lucky really that we didn't both prefer to be doing the one thing!

I have to have all the bits laid out in a very specific way of course! We also have to check for granulomas, build up of scar tissue around the stoma and treat them if there are any there. The Swedish nose, otherwise known as as an HME which keeps his tube moist and grot out is changed as often as needed. Suctioning again is as needed. The tube itself is changed every couple of weeks or more frequently if there are problems, ie. colds, grot or a build up of secretions.

It is amazing how over time we have both become more relaxed with things when dealing with the trachy, though I'd never say we are comfortable with it.

The poor little thing has had a bit of a time of it with the fit of the tubes and had a very sore neck on and off but he takes it all so well. The temporary stiches also didn't dissolve as they should have done and had to be removed. Mind you I do think his first words will be 'bloody trachy' or words to that effect!!

The photos show some of the things that are involved with the daily care of Alfie's trachy.

Trachy changed 2 weekly, tapes and dressing which are changed daily and swedish nose.

Forceps and scissors, swaddling blanket that we have to use to calm him to do the changes.

Normasol and swabs for cleaning.

Saline and syringes to loosen secretions.

Catheters for suctioning.

The suction unit that has to go everywhere Alfie goes, and this shows scale and normal use!

Recap part two

Just a few more things I was thinking about since I wrote the last recap that I thought would be better in a new post as opposed to adding them to the last post.

Starting with the awful week in the local hospital. We went in for a very quick visit that turned into over a week before we were transfered to Oxford. In that time the main thing was that we were monitored which was a bit of a joke. It involved putting him on monitors and them being in the greater part ignored and us feeling like we were losing our minds.

Doing his own oxygen!

An adult ENT was bought in to see Alfie to check his airway as much as they could, which was limited as they cannot perform procedures that involve sedation on infants under 6 months in Reading. He ascertained that was a certain amount of congestion in what appeared to be a small airway. he suggested a nebuliser and then a 'head box' to try and clear it with moist air. Alfie hated the head box and we had to make the decision to take him out of it as he was hurting himself on it.

His very own sauna.

He also got a terrible tummy upset, we think due to having to change his feeds as we were told there was no facility to make them up ourselves. This weakened him even more and he was appearing more and more sickly. We tried asking people about his tummy but nobody was interested. The room we were put in was tiny and very hot, this was supposed to be to protect a tiny vulnerable baby. What it actually meant was that we could be side lined more easily. The room was dirty and not cleaned properly the whole time we were there, the bathroom never cleaned. The bin which had all our rubbish including his terrible nappies (tummy upset) was only cleaned once a day. How we all didn't end up ill I don't know.

Stuart and I barely left the room and never left Alfie without one of us or one of our mums as it really didn't feel safe, we had to sleep in shifts in the room as we didn't dare both sleep at the same time. By the time we got to Oxford we were totally exhausted. It was a very lonely time in Reading as we only had our Mums visit, this was mainly because we had no idea how long we would be there from day to day so couldn't organise anybody else to visit. Things on this front did improve in Oxford as we knew we would be there a little while and Dad could take time off work to come and friends as mentioned before could visit us if not Alfie always.

The care in Oxford was totally different, monitoring meant actually watching and responding to the monitors all the time and caring for us too. We mentioned his tummy and straight away they took a nappy to test for bugs and try and sort him out. We had a room in the Ronald MacDonald house which was a life saver and we felt we could trust the staff so actually slept for the first time in over a week.

The week in PICU was one of the most awful weeks we have ever spent but also we felt safer as he was in the best care. We spent the whole time waiting for 'that phone call' which thankfully never came. Our days were spent sat by the cot side watching our boy who was at first paralysed then heavily sedated on Morphine. He also had a line in his head, we called this his aerial! He got very puffy and looked nothing like the Alfie we had taken a few short days earlier.

So scary.

Being my little hungry hero he took his first bottle really well after removing his own feeding tube! He then went back up to the ward and was a little slow with a bottle over night as he had the wrong teats. In what at the time thought was a bit overkill the nutritionist and speech and language therapist were called as he had 'trouble' feeding (but afterwards we were grateful that they cared enough to do this)! Beth put him on a 30 minute maximum feed time and with the right teats he never looked back.

During this time we had the wonderful support of our friends, those previously mentioned and others who were unexpected in the sheer level of their help. In this I have to say about our neighbours who have shown themselves to be true friends, Claire and Zach who took such good care of our furry babies and Jude who made us the most wonderful home cooked meal and cakes. We really did discover our true friends. Also appreciated were the almost daily texts from some of mine and Stuarts colleagues.

After a good feed with Grams! Aren't they all?

Relaxing with Daddy.

I kept him breathing like this for 4 hours.

We then had a great week thinking he was improving immensely, almost like he had a had a rest cure in PICU. Unfortunately things took a turn for the worse. We had no preparation for the trachy as it was so sudden. We later found out all the things that we should have been told before it happened, like the crying. Because Jayne, the great respiratory nurse was away we couldn't start our training until 5 days in. Unfortunately this didn't hel pus with the general care, such as feeding with a trachy, nappy changes so as not to hurt him, dressing him and all the other basic care things we needed to do.

Feeding after a trachy, not a problem after all!

Alfie had some problems with the fit of the trachy too, due to his (how to put this politely?) chubbyness. Miss Lennox had to do a small amount of lipo when putting the trachy in! special tubes had to be ordered in to try and get ones that fit.

We then had to live on the ward for a few days so we could do all his care and sleep with him but with nurses on hand. This was to get us home as soon as possible. Reading tried to get us to do another 2 weeks with them but this was SO not happening, we weren't staying over night there again. We got it down to 2 hours in the end!! Coming home as Stuart said was amazing and terrifying. We slept with the light on for a few weeks just in case he went blue in the night.

Unfortunately we had yet more heartache to come. We went out for our first day away from home (just up to my mums) and came home to a phone call saying that our precious Oberon (my child substitute cat) had been run over and killed, we were both devasted.

Oberon, the last picture I took in one of the 1/2 hours we had home.

Thankfully Stuart has been at home with me throughout the transition, neither of us would have coped if he hadn't. The stress of the basic care we have to do is so high. We are getting there but even a bath is very much a 2 person job which then has to be followed by a tape change. Stuart is going back to work next week but thank goodness he has an understanding boss. He will be able to work from home for a while. This will help us both immensely to make the change back to him working.

Bathing with Nana.

I had very few fixed ideas as to what I wanted to do with Alfie but one was to take him swimming from tiny, not happening due to the trachy. Another was to make sure he went abroad from his first year again not happening as we of course had to cancel our holiday which as anybody who knows me hurt like hell!!! Sitting in the market place in Newbury with a cold glass of wine, not quite the same as Antibes :-).

We are hoping to be brave and go to the lovely cottage in Cornwall that we feel so at home in very soon. Just need to inform the local hospitals and work out how to fit several boxes of catheters, 2 suction units and all the other baby stuff into a car that barely take the 3 of us!

We are also learning to cope with peoples 'interest' in Alfie when we are out. The suction unit sounds a little like Concorde taking off, so sat in Nero's with a quiet coffee proves interesting. And the comments people make like one so called friend who rather bluntly asked 'will he always be a neck breather?' As you may know I am a bit of a sensitive soul and find this quite hard. Mind you at the county show one guy nearly fell over his own buggy staring and I just said 'don't stare, ask!' and he just smiled rather sheepishly, so you do learn to adapt. One other thing I have learnt is not to read any of the books about babies because until the trachy goes there is a fair bit he can't do. However as far as we are concerned Alfie is normal little boy who happens to have a tracheostomy.

The last thing is to welcome our latest arrival Myrtle.

I hope you have lasted to the end of this and that it helps you understand what we have been living through.

A year ago today that we first set eyes on our boy

Or what we later found out was our boy! We had our first scan and saw our little bean for the very first time a year ago, 20th September 2006. It was an amazingly emotional and what turned out to be scary day.

We were told that there was an area of bleeding behind our little bean, which if it moved could take our precious boy with it. Having been through so much to get to this scan it was terrifying to think it could all go so wrong.

For those of you who don't know we started trying for a family about four and a half years ago and I fell pregnant almost straight away. Unfortunately after an early scan because of previous endo treatment a problem was seen and I had a miscarriage at 7 weeks. We then kept trying and after a while were refered for investigations and various lots of treatment including very nasty injections and mind altering drugs (Stuart will attest to this!). We then finally qualified for our one NHS cycle of IVF in March 2006.

To have this we had to have no previous children from any relationship, a pre-existing fertilty affecting condition, been trying for more than three years and for me to be over thirty six but younger than forty. So just a few things!

We started the cycle in the south of France in July 2006 having no expectation that it would work. We were even planning the world trip for when we had to admit we were never going to have a family. I have to recommend being on holiday for the treatment, you don't notice the hot flashes etc. and are far more relaxed.

As anybody who knows me will be aware I have no religious beliefs but when we were away we went to see Saint Sarah who is the unsanctified patron of the gypsies. This was a strangely moving experience and when I got home I googled her and found out her saints day was the day that our embryo that became Alfie was put back so to speak, August 19th.

The egg collection was the most surreal experience as I spent it discussing The Sound of Music with the somewhat camp anaesthatist as they came at me with the worlds biggest needle!

I'll say no more than, interesting reading material.........

The first scan was not the end of the scares, we had our Nuchal fold scan and were told that there was a potential for a major problem and to come back in a week. This was the worst week of our lives at that point. Thankfully the next scan was clear and we got the chance to believe this might actually happen.

All I can say is that when we had that first scan I could not have believed the rollercoaster ride ours lives were to become but for all of it I am so very grateful for my perfect little man. He is an amazing, happy, sociable little chap with just a hint of a temper (and before you say it, I can't imagine where he gets that from!).