Photo Diary

Sorry it's been so long. If truth be told I haven't really done too much, I'm focusing on growing and making cool sounds. I'm now 12lbs and have just had my Oxygen reduced a notch. I thought I'd show you some photos from my album whilst I have a bit of time on the computer.

 
 This is me and my Dad in Tatton Park, Knutsford. 

 Notice my Dad's pleasant smile, un-scarred by the events that will soon develop.


 
During this visit I made an explosion in my nappy. Mummy generously allowed Daddy to change my nappy and passed him the small bag containing changing paraphernalia. Daddy took me into the changing room, placed me on the changing table, undressed me and said "wooooo" when he saw the damage. He then panicked as he (Mummy) forgot to give him the wipeable changing mat. He didn't have his mobile phone. He couldn't get me dressed again without a big fuss. So, he picked me up by my legs and realised that my mess had spread all down my back and up to my neck. He tried to wipe most of it off, but had to put me back down to get the nappy ready. I smeared the table. Daddy looked stressed. He then put the nice clean nappy by my hips, so I put my feet in my old nappy and wriggled all over the new one matching the colour from old to new. Daddy threw the nappy away. He then proceeded to wipe me clean with the utmost of care as he was down to his last wipe, sadly it wasn't enough. Luckily for him I'd made a mess of my new black top so he used that to clean the rest of me, and the table, before throwing it in the bin. (Later removing it after being a little hasty!)After ten minutes Dad had nearly got me ready when Mummy appeared and asked if he needed a hand. Dad ran away and left me with my caring, skilled mother. 


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I had a go on a bouncy castle at my friend's birthday party the other week. All the other kids LOVED playing on it. I wasn't too sure. 

Dad has started to play Squash again at the local leisure centre. To make sure he doesn't get shouted at by Mummy he suggested that I should be taken to the play room. Mummy was very happy with this idea and I absolutely loved it. 


Here I am going cross-eyed with excitement. 

Here I am practicing my silly face.







Here I am practicing another silly face.



 



Here is Dad looking like he's thought of something very exciting. 





 



Here I am being subjected to Dad's very exciting idea.

Back at home it was time to chat to my Grandma - 'Khun Yai'. Together we came up with a plan of world domination. 


Mwwwaaa haaa ha haaaaaaaa.

Only joking. I wouldn't harm a fly. Honest.

 Thanks for stopping by.

 Felix and Co.

x
xx

A little schedule

Home is my third location and it's also unquestionable my favourite. At home there are five rooms but I spend most of my time in the bedroom or the lounge, with occasional visits to the bathroom. I also have my own room, but it's super small with no windows, making it more like an oversized cupboard than a bedroom. As my parents love me they feel guilty even thinking about putting me in there and are scared that if they do, social services will come round and take me away. So, instead, I'm sleeping very happily in the garden shed.

That was a joke.

Don't take me away.
 
As well as my own little room, I've got my own little schedule too. It's fairly complicated and often changes depending on my mother's social agenda and my father's willingness,  but it is a schedule, of sorts. I'll quickly attempt to run through key appointments in my day.

6:00am - I've usually had enough of sleeping by now. I do spend most of the night asleep but just to ensure my parents are still alive I subject them to various reaction tests. These test vary in severity from a few sniffles here and there, to full blown milk-out-of-the-nose choking. On each occasion my parents have confirmed they are still alive, very alive in some cases. 6:00am arrives and I'm ready for a feed from Mum or a cuddle from Dad.


6:30am - On Mondays, Wednesdays and Fridays Dad disappears to go to the Gym, blaming me and the sugar required to get over baby-in-hosptial adrenaline dumps for the weight he has gained. Ignoring him, I snooze with my sleeping mum until he returns.


8:00am - Daddy comes and saves me from the bed. To do this he climbs over the bed, turns off my oxygen, unplugs me from the 02 tank, wraps the tubes around his arms and carries me downstairs where he reconnects me to another tank. He then removes a bottle of milk from the freezer,  plays with me, sings to me then plonks me in my chair whilst he prepares my medicine. Mum sleeps. If it wasn't for Dad I don't think I'd move from the bed.

9:00am - Daddy disappears to work. Mummy reappears. 

10:00am - Time for medicine, nappy change and a feed. At the moment I'm on 10 different types of medication and take them in varying quantities, three times a day. They don't taste very nice and they stain my clothes. My Dad took an arty-farty photo of them the other day to make them look more palatable. It didn't work.

11:00am - Around this time I am baby sat by my Grandma. Grandma lives in a computer and speaks Thai just like my Mummy. She talks to me and calms me down whilst Mummy has a shower and tidies the house. Mum says she tidies the house, but I always see her at another computer or playing on her phone. When Daddy gets home from work he is told to tidy up.



12:00pm - Mum usually takes me outside most days, she disconnects me from my big Oxygen tank and connects me to the smaller  portable one. She then pops me in my pram and pushes me down some very bumpy roads until we arrive at our destination. Our destination, invariably, is Mothercare. No, that's not true - I do go to the park lots and I have lots of friends whom I meet.

3:00pm - Back at home, disconnected and reconnected, time for more medicine and a feed. I should state that my feed times aren't really this regular. I'm a 100% on-demand baby. Sometimes I'll wait four hours, sometimes two. If I shriek loud enough, I'm fed.


5:30pm - Daddy comes home. Mum and Dad put me on the floor and make me lift my head up. It's really easy and I'm not to sure what all the excitement is about but, it makes them happy which is fine by me.

8:00pm - Eight PM is bath time, this is really Daddy's duty but sometimes he's a bit lazy so toys with some excuses 'Felix is fast asleep' or 'He's had a busy day' yadaa yadaaa. If I'm lucky enough to make it into the bath I am disconnected from my big tank and reconnected to my portable tank. I don't like being undressed. I don't like being carried to the bath naked but, I love baths The other day I had a bath in the kitchen sink after I made a mess in my nappy.


9:00pm - Feed, Medicine and story time. Mummy and Daddy take it in turns reading me a bedtime story, Dad reads me stories in English whilst Mum reads me stories in Thai.  I'll usually fall asleep straight away after my story and I know my Mum and Dad aren't far behind me.

 

Health visitor vs Felix

Today my health visitor came to see me. She comes once a week and always wants my parents to take my clothes off so I'm all naked. For this reason, I always make sure my nappy is full and requires changing.Once they've done this, they pick me up, place me on the hardest bed ever, take a step back and then start talking about numbers. Today the number they talked about was "4.12". Mum sounded very happy and I saw Dad twiddle with his phone, he pushed a few buttons and then said a new number "9.08". Everyone looked pleased, which was a relief, as I was picked up again, dressed, and placed on my dad's lap. On days like this, not only do I get naked, I also have my head measured for hats that never appear. Today my head number was 37.5. This didn't produce the same excited response my naked number did, but I wasn't naked anymore so I didn't care. This 37.5 number was talked about for a while and the health visitor started to draw pictures in my red book. I was told I shouldn't make my head grow that fast. I didn't think it was.

Normally I really, really like my health visitor but, today I overheard something that has made me a little cross. Since I've returned home I'm helping myself to as much milk as I please. Some days, I feed for hours on end even when I'm not really hungry. I also use my mummy to relax, not really drinking but just sucking or playing. This is all about to change. Mummy was advised to not let me just 'play' with her pillows, as it takes a lot of her time and stops me from feeding properly. Apparently, I will also find it difficult to settle down by myself. Grrrrr!! I don't settle because I want to play!

Dad said if he catches me misbehaving like this, he'll pick me up and place me on the naughty step. Fine. Bring it on.

I had a thought, "If I can't play with my mum's pillows I'll find something else to suck" and today I did. It was attached to one of my hands.

Sucking on my hands is good fun and I think it's making my mum jealous. If I keep it up, she'll eventually crack and will beg me to come back to play with her.

In the afternoon, I had another visit from my friend on the 'Nurse at Home' team. She brought me lots more medicine as mine keeps on expiring. I now have 10 different types of medication and it all tastes horrible. The problem is, it's usually mixed with my milk and I like milk.  So I drink it without complaining.  This lady also brought a machine to test my Oxygen Levels. This happens once a week and every time we have a quick test I always show off. 100%.

 

Last week I had the all important 'download'. This is when good results really matter. All of us were hopeful I'd continue to show-off and as a result I could have my Oxygen reduced. To please the judges I had to show them my Oxygen levels won't drop below 90% and average above 95%.

I was strapped up to the machine from 7:00pm until 8:00am the following day. After returning the machine (ibaby!) we waited by the phone for the results. The phone didn't ring. We waited, waited and then just picked up the phone and rang them instead.

Not good news. Sadly, the computer said "no" and the judges concurred. I had too many 'blips' below 90% and needed to stay on the same level for another 2 weeks. This upset my parents a little bit and I think my mum cried. She doesn't want my face to have these things on anymore.

  
She wants them off so I can look like this.


 

CHUBBY CHEEKS!

Daddy's Comments:

Felix has been putting on weight FAST. He is now 4.12kg, or 9.08lbs. He is averaging around a pound a week which is amazing. We can now really see his arms and face getting chubbier each day. His head measurements are important to see whether the fluid in his brain is flushing correctly. A sudden increase in circumference could indicate fluid build up, which in turn, could be a sign of hydrocephalus. No one is overly concerned yet, as he shows no sign of discomfort and his 'soft spot' is still soft.
We are having another download next Thursday and hope to be able to drop his Oxygen levels.
Apart from that and his choking episodes Felix is a normal health chubby baby!

Around my house

Today has been a truly awesome day. Now I've got my mum nearby I have learnt that all I need to do is cry and I will be fed. Last night I did this every hour. This morning I was so tired. So,  I had my regular four hour break, and am now just starting to pick up the pace again. I've had a health visitor and a hospital-at-home nurse come to see me today, they weighed me and measured how my Oxygen levels are doing. I'm pleased to say that I've gained weight and my O2 levels were 100%.

The best of today was getting to know my house and the area where I live.

Here I am with Dad and some flowers. These flowers were planted just before I appeared in the world. Look at us bloom.

The very pretty lady on my right is my Mum. She appears in lots of photos because of that fact.

 

Here I am posing with my Dad. This is my garden. My garden!

OK, it's your garden too Dad. 

 Here is that beautiful mum of mine again. We are both in the kitchen. I've never smelt big people's food before and my mum cooked something called 'Masaman Curry', my Dad had to open the doors and windows as he thought I would choke on the chillies being fried.

This isn't my garden. It's the park right next to my house. My parents LOVE walking so they couldn't wait to put me into my new pram (thanks Grandparents and Great Grandparents)

Yes Dad, I'm still breathing.

 Did you not believe Dad?







Peekaboo!

After all that fresh air it was definitley time to take a well deserved nap.

 Night night x

Daddy's comments

Although Felix didn't mention this,  we think he's scared of the unfamiliar environment, especially at night. In the hospital there is always light in the rooms and low-level noise. In our bedroom it's pitch black and quiet. We noticed Felix was unsettled when we roomed in with him at the hospital because it is also dark in their family room. Last night he was awake every hour and would try to feed at any given opportunity. The same happened after lunch time, he'd wake, cry and start sucking his hand. When presented with a breast he'd fill himself up so much that he'd deposit some in his mouth or explode in his nappy before falling asleep. He eats as much as his mum and eats as fast as his dad. 

What a trooper.

Love being back at home,

Rob x

How to get home

I wouldn't class myself as an expert on how to get home, it took me 9 weeks, 3 days and 10 hours. I know many babies manage to get home in less than 1 day but if you get caught in the hospital's web, this may help.

First things first, only go home when you're ready. As you can see in this picture, I'm clearly not ready to go home.

It takes time, but don't rush. If you came early like me, then you need to give your parents time to get things ready. Perhaps they need to buy you a cot, a pram, bottles or nappies. They may also want to set up a little nursery for you, clean the house and buy you some clothes. This is why I waited such a long to go home, my parents hadn't done anything before I was born and when I was they just stayed next to me instead of sorting anything out.

 


When you feel that your ready for the next step, there are a few things you have to do to get past the doctors' defenses. Firstly, you need to put on weight - this can be difficult, believe me. It takes lots of time and sometimes you'll find yourself losing weight which is not what you want and it also confuses people. Don't get disheartened. You'll more likely get weighed twice a week or more so it's easy to get back to where you were. If however, you feel like you're not getting anywhere, I suggest making yourself constipated. It really is surprising how much difference a single poo can make. Last week I lost weight, but after using this method this week I put on 320g! (11ounces). Everybody cheered. Hooray for Felix! He's put on lots of weight! That was easy, the hard part if getting rid of it again.

Doctors also want you to breathe by yourself, but if you can't do that very well they will let you go home with some Oxygen. My parents tried hard for me to breathe by myself and they kept on pushing to turn off my Oxygen supply. This was fine for a few days, but I did get very tired. I also changed colour and made my parents panic, but I don't remember that. If you try to breath air before you're ready you'll probably stay in hospital a little longer than necessary. I advise you to let the doctors and nurses keep you on a set-level and behave. Nobody likes a show-off, especially one whom changes colour.

If, like me, you are going home on Oxygen you'll need the assistance of your parents and nurses. The nurses will phone the Oxygen people whilst your parents will phone the fire station, home insurance, car insurance and utility providers. They will let them know you'll be coming home with stuff that helps you and stuff that makes things burn.

All done? Great. You're nearly ready to go home. All that is left to do now is to take your milk from the hospital's freezer and put it in yours at home. My Mum made a lot. If yours did, you'll have to get your parents to buy a new freezer to fit it all in. Warm, old milk smells like my feet.  

Finally, you need to make sure you have all the ingredients for your cocktails. I have nine different medicines to take daily. Make sure your parents don't drink it with their tea.  It's very important!

Quick check list

Have you.........
 
Given your parents enough time to sort themselves out?
Put on weight?
Arranged oxygen if needed?
Taken your milk home?
Brought your medicines with you?


If you have answered 'Yes' to all the above you're nearly ready to go home. All you need next is;

A little something to say thank you to all the nurses and doctors.

A very proud Mum or Dad with a flying chair.

A suitable going home outfit.

 

  

and sleep (very important)

 When you wake up.....

 Congratulations!

You have made it home. 

 

It's now time to broadcast yourself to the world. 

Hello Thailand! 

Hello home. 

 Thank you all so much for your kind support whilst I have been in hospital.It has helped more than you can imagine.

I love you all. 

Felix

x

Farewell Feeding Tube

So, after two weeks of attempting to remove my feeding tube my hard work has finally paid off. Unlike in Liverpool, the nurses in Macclesfield have much more advanced tape to keep the tube stuck firmly to my skin. I could no longer perform my ‘hook & pull’ method to yank it free as whilst I’m flapping my hands over my face to secure a hold I’m spotted and mittens are placed upon me. No, in Macclesfield a new plan was required, a plan which requires patience, stealth and an unrelenting will to succeed. I named this ‘Operation Feeder’.

Operation Feeder consisted of clawing and scratching away at the tape over a large period of time. When I’m not picking I made sure I hid any evidence. If I worked too fast the big people would spot something was amiss, too slow and I would risk the weekly re-insertion of a new tube. I likened this to prisoners chipping away at their cell walls with makeshift pick-axes, rebuilding each morning so the guards did not notice. I’m a prisoner and I haven’t even reached my due date yet.

When the tape was sufficiently removed it was time to make the final pull. Two twins in their incubators sounded their alarms for me, distracting the big people and giving me a just the right amount of time to pull the tube away from my face. It hurt, but I was successful. It's now been over 48 hours and my face remains feed tube free. I still have plastic tubes up my nose but either way, I’m claiming this as a victory. Another result for Master Felix.

“What’s next on your agenda?” I hear you cry. Abolish thermometers? Milk on demand? Ward peace? These are on my agenda but the most pressing matter and the one which is closest to my heart (or nose) is obviously the removal of these oxygen tubes.

Each day, with the help of my parents, I can feel the trickle of cool, dry air reducing. I have managed to pull the small nasal plugs out of my nose on a variety of occasions but sometimes they stick and spike me. I know that if I can get my monitor to stay above 93% when I have had my Oxygen turned off, the nurses won't turn it back on. This can be tricky, but I am learning to meditate to control the machine. I will persist. Not just for me but for all the babies in this ward. One victory amongst the babies boosts the troops. Only yesterday for example we saw another of our friends escape. His parents arrived in the afternoon with a sort of flying chair. They strapped him in, hid his Oxygen canister in a tall bag, threw it over their shoulder and marched brashly out of the door. He hasn't returned and the nurses never questioned his disappearance. He’s made it "home".

Congratulations friend, I’ve made notes and I plan to share your success with my parents and any new arrivals. Once I find the right moment I’ll see you at “home” soon too.


(Here I am attempting to escape the cot, but as you can see the monitor is at 79% - it's about to alarm and send the nurses running)

 

Remaining persistent

Felix.