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!).

Being At Home

My idea of how the blog will work is to provide 'you guys' with an insight into what's gone on before and where we are now with regard to living with Alfie and obviously his trachy.



We've been lucky to have the support of both our Mum's, my Dad who was battling his own demons at the time, and some very good friends throughout the time in hospital and now that we are home. So to the Holden's (Kate in particular who along with Mum have done a special CPR course and a tube change which I wouldn't wish on anybody so they can baby sit for us) and Nic and Tim you have our deepest gratitude (especially for feeding us so well when we were in hospital and sneaking in the odd bottle!). Additionally we have a massive network of people who have sent their best wishes and support, again your thoughts have helped us through this.



I also want to thank Catherine for encouraging Sarah to start this blog (after writng her own about her precious boy Reuben in such a beautiful fashion), although I now struggle to get her off the laptop (look who's talking!). Good luck with everything.



Right enough of the serious stuff, now for some anecdotes......



One of the main impacts of Alfie's tracheostomy is the constant need for suctioning to ensure that the tube doesn't become blocked by secretions. This means that we get through a very large number of suction catheters, these are packaged in boxes of 100.

I have to say that these boxes look horrible and are too much of a reminder of the medical side of the situation. Hence.......

Those that know Sarah will appreciate this....within days of getting home we were the proud owners of two new tall vases to store these catheters in, one for upstairs, one for down!

And little baskets to drop the used catheters in as I couldn't bear them being droped on the floor!

We also have two baby boxes, you know the ones from Mothercare that hold bathing stuff, creams etc.? Our second one has tapes (these hold in his trachy and have to be changed every day), dressing, saline solution, granuloma cream, swedish noses, spare trachys and various other fun bits and pieces. Our coffee table has become a changing station, not for nappies but tapes and tubes! We also have to have a cot in the living room as he can't be put down to sleep too far away from us because he can't cry and could have problems with his tube. It had to be a cot when we looked at him a couple of weeks ago in his moses basket and realised both head and feet were touching the ends! He's a big lad :-) Of course the cot is colour coordinated with the front room. Of course!

The other thing I have to thank my mum for is her great line in Trachy wear. Because of the trachy tube, clothes are not easy to get as they are either too tight on the neck or could block the tube and effectively smother Alfie so my mum has been binding little Vs that she has cut into round necks with matching ribbon so he can still wear the lovely clothes he has been bought.

Ongoing

Since the last lot of info we have had a very good appointment with Alfie's ENT, looks like the trachy will hopefully be out sooner than we thought.

He has also started on solids as he is such a gutsy boy! This has its trials and tribulations and is not at all how I imagined weaning would be. Having to suction him up to 4 times during a meal just so he can breathe easily is not much fun. Also you have to be so clean as any dribbled food can go down the stoma (hole) and cause an infection in his lungs. One of the first solids feeds I did was awful, I had to suction him and it made him throw up a little and the milk all went down his trachy tube potentially drowning him. Thankfully I still had the suction unit on and could clear it immediately but it frightened me to death.

Anything like this also means you have to do extra dressing or tape changes as you can't leave the food to sit near the stoma. I always knew being a science technician would have its uses, just never weilding forceps to change a dressing or syringres to clear a trachy tube. Hey ho thats just the way life goes. They say children and problems go to those that handle then, just goes to show......

The risk of food running down the trachy tapes makes all feeds a bit of a full on exercise, but we are getting there slowly. Can't see it getting much easier whilst the trachy is still in....counting the months...

There are so many minor hazards that could become a major issue, like keeping his Swedish nose on. This is a heat exchange humidifier and filter. It keepes the tube clean and moist and he is an expert at removing it!

What I do have to say is that no matter how much I hate the trachy I have now come to terms with the fact that it is the best thing for him as it keeps him safe and keeps us out of repeated hospital stays.

He is the most amazing, contented littel porklet!

He is now 18 weeks and over 17lbs and can eat for England.

We have learnt to understand all his funny little wheezes and gurgles as he can't vocalise past the trachy. It is fine when we are at home and it sounds 'normal' to us but the lack of vocalisation is so hard when we go out and see other babies. Getting out and about has its challenges with the oh so portable suction unit! The thing weighs 5.5kg and is hugs, the only thing portable about it is the fact it has a handle. It has to go everywhere Alfie does along with his emergency kit and foot pump in case the unit breaks down. We actually had to get a new buggy to carry it and add a buggy board for it to sit on. We are hoping to get a smaller one very soon, thanks to my insesant moaning! All of this along with all the normal baby stuff makes for an interesting time. This said we have tried very hard not to let the trachy limit our enjoyment of our very special little boy.

I will try and keep this up to date as much as possible.

Sx

Recap

30/08/07

Alfie Jake was born on 17th May after an emergency c-section.


That single sentence makes it sound like a breeze....however Sarah underwent the section after going through over twenty hours of labour, things were going well for the first five hours but then someone had other ideas about turning up! What you thought I was going to let Sarah have all the fun with the blog??

Our new arrival!

We had a lovely 4 weeks with Alfie but he started to show breathing issues and signs of an over large tongue. We mentioned it to midwives, health visitors and then GPs and finally had a referral to the hospital, we went in on 13th June for a quick check and came out after 7 weeks!

As new parents we had no reference point for how snuffly normal was for our little boy so we were reliant on the health care professionals to give us the best advice.....All I can think is thank god for our persistence.

Prior to hospital visit......problem...what problems???

In that time we had a horrible week in our local hospital being 'monitored' then were transferred to the John Radcliffe Hospital in Oxford. We were there a couple of days and awaiting a broncoscopy when Alfie stopped breathing in my arms during a feed which was so frightening I cannot describe it and had to be intubated. This was supposed to be in for 24 hours and ended up being 10 days in PICU on a ventilator. We really thought we were going to lose him at this point but thankfully he is a battler.

After the roller coaster ride of Alfie's arrival this was like a kick in the guts. When we first went in to Reading neither of us realised the serious nature of Alfie's condition. The morning Alfie choked on his feed felt like the bleakest day ever, worse for Sarah as she was holding him at the the time. Luckily two nurses were with us at the time, the speed with which the crash team arrived was staggering and the room was soon full with over twenty medical staff all trying to resucitate our son.

The next few hours dragged as we waited for news on what was happening.

The staff in the PICU were brilliant especially once we started to feel like a permanent fixture as other children came and went as Alfie stayed.

Making the best of small moments came when after a week we got the chance to hold our baby again, as despite all the tubes and wires we both got a cuddle!

PICU

, what a difference a few days makes.

He then went back to the ward (having managed to gain 1/2 kilo in PICU!!!)and was doing so well that we were going home on the Tuesday, he then started to go downhill again and had his broncoscopy brought forward to the Wednesday and they had to give him a tracheotomy as they thought that the tongue may be causing an obstruction. What they didn't tell us and we didn't realise was that he would no longer be able to cry which broke my heart. We saw him in PICU again and he managed to stop breathing because they were not doing the right thing to maintain a new trachy due to lack of information rather than care.

He then started to cry and there was no sound at all just a look of distress.

As hard as it was to come to terms with the fact that my little boy had lost his voice it was harder seeing Sarah's face as she came to the same realisation. I'm just so grateful that we have been able to be there for each other through all of this.

Thankfully this stay really was only twenty four hours.

We had more times of thinking we may lose our precious boy, which for a while we could not admit to each other. Another 3 weeks in hospital being taught how to manage the trachy and we finally came home on Wednesday 1st August. This is after some ridiculous wrangling with our local hospital, which involved us having to prove ourselves by me doing a tube change in front of an audience just so they could tick a box. Thanks to the fantastic training Jayne (the respiratory nurse) had given us this was totally unnecessary.

Going home. Scary and amazing in equal measure. Not having the support of the hospital, but having total independence. I don't think either of us slept for those first few days.

We however still have no firm diagnosis and the prognosis is that he needs to grow out of the trachy and into his large tongue/small jaw etc.

I have to say that it's the not knowing that is/was so hard...

Despite everything Alfie still gained weight in hospital

Whilst in PICU he also developed a really nasty infection from the central line in his leg, they had to treat this with a long course of heavy duty antibiotics for more than 2 weeks. These then gave him a horribly upset tummy for a number of weeks and we are now still trying to deal with the constipation after effects!

The paediatric consultant recommended a tiny bit of juice in boiled water and it works a treat. I have to say my boy is a once a day man, can see him heading to the potty with a newspaper before long.

What can I say....that's my boy!

He gets very distressed if he can't go which is fun as he has another issue of breath holding and going blue when distressed, i.e. if you wind him or don't feed him on time. His favourite game is the early morning feed, standing up (since 11 weeks, strong little man), going purple and hanging off my hair, great at six in the morning!

Other than the trachy he is doing really well now and is a strapping 7.2 kilos (16lbs) and already almost out of 3-6 month old clothes at 15 weeks (he is very long!). He certainly doesn't look like a poorly baby it has to be said. We are just about coping as it is a incredible responsibility looking after the trachy involving suction units and all sorts, no such thing as just popping out any more!
I spend my days changing the tapes around his neck and suctioning the secretions from his tube. This has to be changed every 2 weeks which is horrible as you are effectively taking away his ability to breathe for a few seconds. This is along with all the usual traumas of being a new first time mum.

We also have to have not only the health visitor appointments but see the community nursing team so seem to have very little time to ourselves.

About to start tackling the weaning issue as he has 4 7oz feeds and 1 9oz and isn't full after that!

Motherhood (after fertility issues) is not quite what I thought it would be! Spending only 1/2 hour in my own home in 7 weeks wasn't what was expected. Thankfully Stuart has been with me throughout as my total rock and will be at home for a while longer.

Sarah, Stuart and Alfie Jake. X

The Beast

More to come when I feel more eloquent!

Eloquence be damned, how cute is this?!