Sleep

We still have two sick children...
We both long for more than 2 hours of uninterrupted sleep. It might come tonight!

Winter illnesses...

...are rife in our home!
Joel has an eye infection and a chest infection and Emily has a throat infection.
Our car's power steering is broke - is that the equivalent of a throat infection?

So don't come to close - too many nasties to catch and Jamie and I are severely sleep deprived as both kids have been up throughout the nights since Saturday.

Look who's talking?!

Whilst 'picnicking' with his mummy and sister!

I no longer need to go to the hospital to have Joel weighed weekly! I can go to the Health Centre weekly unless his weight falls. Joel is now just under the 2nd centile but has not fallen. That will save me so much time and energy and I might get to meet some other mums at baby clinic too. Jamie starts exam marking tomorrow so he has priority on the laptop. There may not be much time for blogging.

(Ignore the mess in the video, we have been playing dens as it has been so miserable outside!)

Tears and Tantrums

When Emily is throwing her body around, screaming, nose running, arms flailing or feet stamping I remind myself of these moments. One, two, three, four, five, once I caught a fish alive!

Just some photos

Not a lot to say, manic week with medical appointments. Joel is 10lb and 8oz - not heavy enough. Emily is great, smiley and fun. Today she told me that I am beautiful and cute just like her! What a great kid! (for trying to make her mummy feel nice!)

No Tube

Don't get excited.... it is going back in as soon as the community nurse arrives. Joel pulled it out overnight. For now we get to see his cute round face! He is now 10lb 3 oz. we see the paediatrician and dietitian on Thursday. Yesterday he had blood taken and his RSV jab.

As promised the marshmallow tasting from Bonfire Night.

Eating apple crumble and drinking hot chocolate. (that's the life!)

Chubby Face

We were back at the hospital this week as Joel was in a lot of pain because he couldn't go to the loo! Four hours later and with a little help and the problem was solved. He was weighed when we were there and had out on 11oz. We (as parents) we so pleased with this, but sadly it is not good enough as the dietitian is not sure how much of that is his actual weight and how much of it he lost after going to the loo! (Such a great topic to blog about :) ) so, we are back again on Monday for blood tests and a jabs and then on Thursday for dietitian and paediatrician appointment. All will become clear then , we hope.

In other news, Joel is making lots of great sounds and moving his legs and arms a lot. He is living up to the amount of kicking he did whilst inside me and hopefully will enjoy sport (Not like his Mummy - more of an arm chair sportsperson).

Emily has been tot he dentist and her tooth will be left for now and monitored, she had fun last night with her little friend Katie who came for a 'Sparkly Party'. We had hotdogs and apple crumble with low banging fireworks to celebrate Guy Fawkes Day. Lots of 'oo's and aah's ' as well as the joy of toasting marshmallows on the firepit. (Photos will follow).

Half term trip to Belfast

We have been to Northern Ireland and now we are back. Our house is nearly finished being rewired and we are well. Joel kept his tube in (well it came out 3/4 of way and Jamie bravely pushed it back into place and retaped it.) It was great to spend time with my sisters, brother and brothers in laws as well as our nieces and nephew. we had lots of fun - it is very noisy when you put five children under 2 and a half (and 3 of them under 20 weeks!)

Ellie May (5/7/06,) Lilah (17.6.08) Sam (12.6.08) Joel (17.8.08) Emily (4/7/06)

It was so much fun spending time with my siblings; Judith, Emma and Delwyn.

Joel got to meet his cousins for the first time. They are a little bigger than him.We went by slow boat from Birkinhead. It took 9 hours and it was so painful. Emily was knocked over as she was standing still watching a man win money on a fruit machine. She has chipped her front tooth and cut her lip as well as torn her gums. We are at the dentist on Thursday to find out about that. Thankfully we had calpol in our nappy bag - it would have made the crossing even longer! I think we will do the longer drive to Scotland and shorter boat instead of short drive mega long boat.

Daddy daycare! ( I had Joel)

Emily had so much fun with her cousin Ellie-May who is one day younger than her.

Our pumpkin won (the one on the left), Judith and Emma tried hard but just lacked the scary factor.

Joel looks like he is filling out a bit, we are back at the hospital this week for weighing and dietitian on Thursday, then his RSV antibody jab a week on Monday as well a

s blood tests, then paediatrician and dietitian as well as weighing a week on Thursday. Jamie is back to school on Monday for the 7 week run up to the Christmas break. Hopefully our house will be finished on Tuesday and then we can see if there is any money left in the budget for redecorating. (Joel needs a new floor!)

Well off to bed -

:)

Car went through the MOT only needing 3 new bulbs!

We can go to Belfast for half term; Consultant is happy that we can get help there if Joel needs it, going back to hospital on 6th, 10th and 13th of November for jabs, blood tests, weigh ins and appointments with dietitian and consultant. So the boat is booked and off we will go!

Today on television there was a snippet with a large waterfall. Emily ran into the kitchen to get me only to bring me into the lounge to say, "the mountain is sad and it's crying, Mummy! Oh dear - can we make it happy?" Sooo sweet!

:(

Only 3 oz this week. Joel is maintaining on the 2nd centile and just not making the progress he needs to. We are waiting for the dietitian to call so that a new 'plan' can be put into place. He is back to the consultant paediatrician on 2 weeks.

Our car is currently going through it's MOT (well lets hope it goes through) and our house is being rewired from next Monday.

Half term starts on Friday and all is well.

Weekends away and family times

We have been away this weekend to Ashbourne in Derbyshire. We had a great time, the sun was shining despite wind and a chill. We visited Chatsworth House, Ilam Hall and the river with stepping stones at Dove Dale.It was lovely spending time with our little nephew Lucas, and for us learning about what it is like to travel with 2 children. (The car was so packed full; I think we take just as much for a weekend as we do for a week!)

In the Bjorn for the first time and very cosy!

Never too cold for ice-cream

Chilling out with the crossword

Nice red leaves, but I am not eating them!

Emily really liked the apple sculpture.

Cousins chilling out before bathtimeTwo boys who will be up to mischief in no time at all!

Joel is doing a little better, he put on 5 oz last week, he needs to put on much more to prove that he is growing and not just staying or maintaining. He had a jab of antibodies to protect him from Bronchilitis ( each jab costs £500 and he needs one every 28 days until March or April) and he has kept his tube in for over a week!

My parents came to visit before they go back to Romania tomorrow. We had lots of fun out and about.

Playing hospitals with Granny

Emily is being potty trained, she was doing well until this weekend. Today just one accident at our childminders so hopefully she is back to dry days. We need to crack that before we attempt nights.

Our house is being rewired next week, we have a great electrician who hopes to do it quickly and without making to much mess. Our floors need to come up in at least 2 rooms and we will need to redecorate at least 2 walls per room, it will be messy but it needs to be done!

We are waiting to find out on Wednesday if we can go to Northern Ireland at half term, we need to be out of the house as we will have no electricity. It will be nice to see my siblings and brother in laws as well as our 2 nieces and nephew. Hopefully the paediatrician will give us the ok!

I had a miracle today. The hospital where I have to take Joel is building a new carpark so it has closed one of the current ones leaving a mass shortage of spaces. Last week I tried for 35 mins to find one and was slightly late to our appointment. I was talking to our electrician who lives in the area who has a friend who has a double driveway 5 mins walk from the hospital. She phoned tonight to offer us the driveway at any time. Not only will it save me a lot of stress but money too. How cool is that? The lady has never met me but is willing to share her drive with me.

Also, when we arrived home yesterday our neighbour arrive with a pumpkin from her allotment for us to cook or carve. What a great neighbour. I am not sure if I have ever seen a dirty pumpkin before, only the shiny, clean ones from Tesco!

At last a family photo with all four of us standing up and with clothes on!

Another week

A week has passed by so I thought I would fill you in. We went to visit our paediatrician ( who is wonderful). Frustratingly, Joel only put on 3 oz in 9 days and is not thriving enough, so this week coming we are off to see the dietitian and for weekly weigh-ins again. Joel will also be starting a monthly cycle of injections that should protect him from catching RSV or respiratory illnesses like broncilitis. He will get jabbed every 28 days until April. Tomorrow he is also getting blood tests taken to check that the medicines he is currently on are not causing any problems and then on Thursday we have normal 8 week jabs at the health centre and weighing and dietitian at the hospital.

This weekend we went to see the deer and kick leaves at Dunham Massey; the leaves are falling and turning colour. I love when they are dry and crispy. It was 'the big draw' so Emily had lots of fun drawing on the paths with chalk. (J had fun too!)

No pumpkins, leaves or trees in our Autumn pictures but, we are all in it!

On Friday we went to Blackpool to show Emily the lights. We had fun, it was a shame we couldn't make it on to the sand, the builders were redoing the flood defences. It rained quite heavily so we ended up in the tower at soft play. (again, J had fun!)

Smiles

We have lots to smile about so we thought we would share them with you. We have started toilet training with Emily - pants are more fun on your head that your bottom!

Tube on the right as he pulled it out yesterday and we swap sides
every time to allow his skin to heal.

A new hat - french style

All smiles at bath time.

Not so much smiling from Joel, but he was getting squashed by big sister!

This week Jamie is still on Paternity leave - Yeah! we are the consultant paediatrician on Thursday, we wonder how that will work out!

Miracles

They really do happen.
Growing up and being part of a community of faith you always hear of miracles happening. Big ones and small ones. I am sure there have been many in my life some I have bee aware of like passing my driving test and getting a job closer to home after my disastrous first teaching post etc, but others that I have been ignorant to. Well... today we had a big miracle and one that I am very aware of.
Joel had his cardiologist appointment. She was pleased with his progress and thinks that the hole may be closing. She told us that it is still loud and unrestricted but there is evidence of tissue growth around it. She has upped his medication as he has grown and feels that if he continues as he has been, there is a 60 - 80% chance that it will close over the next year. we are being monitored fortnightly by the paediatricians and consultants at the hospital and if he continues okay we will not been seen by her until December or January.
In the meantime his feeding tube has to stay as his heart progress is linked to him growing and reducing the amount of stress put on his heart by feeding, he needs medicine to help him digest the milk ( that is a real struggle for him and causes him to be in pain.) and he has his medicines to help protect his lungs.
Wow, a real miracle as Jamie and I had prepared ourselves for surgery and the difficulties that brings. Surgery has not been totally dismissed but it feels like it is further away than we thought.
So tonight we go to bed giving thanks to God and to all who have and are supporting us in a variety of ways.

A miracle

Joel was back at the hospital today to be weighed and checked. He has put on 11 oz in 9 days. (equivalent to the weight of 11 pencils :) ) How great is that? He is looking so much better, his little face is rounder like it was when he was first born. He now has a new tube in place that will stay for at least 4 weeks. It is much better as it is secured with see through tape so we can see a lot more of his face. Hopefully it will stay in place and not need redoing as this one is a little thicker and Joel found it really uncomfortable as it was inserted.

What a great day. Joel is a little closer to the magic target weight of 6 kilos. He needs to be this before they will consider the operation for his VSD. We find out on Thursday if the VSD is improving or if surgery is the only option. For now we say, "thanks be to God."

We still have concerns.

1. He is still not breast feeding for long enough periods without getting tired or clammy.

2. He is struggling to digest the nutrient dense milk and needs laxatives ever day.

3. He is in discomfort and sometimes pain as he can't or struggles to 'go'.

Emily is doing well, we are about to formally embark on toilet training, she has been trying with some success but now we are 'seriously' trying!

Back to the cardiologist on Thursday at 2.30pm. You never know we may get another miracle!

We have so much more to smile about today.

The NHS

Many people have a variety of opinions on the NHS. Here is mine.

It is great. End of!
Well to give more detail we have had nothing but the best care for both Emily and Joel. When Emily has been in hospital we have been treated so well, with so much care and attention and this has been mimicked with Joel too. We have the best team of consultants, paediatricians, dietitians, drs and nurses all looking after us. We have community nurses calling us every other day, health visitors visiting and making sure that we are coping with the feeding, and our nurse from the ward making sure that we are ok and managing with all our appointments etc.

Emily has a chest infection. She is now on 4 different types of medicine to control her temperature, clear up the infection and to help her cough.

Joel is on 3 different types of medicine plus his special 100 calories per 100ml milk.

Thank goodness for the NHS, for the care that we are receiving and for all the medicines that are helping making our children better. We appreciate all that everyone is doing.

So whatever your opinion is on the NHS, mine is positive as we have had had nothing but good care and treatment (and its free! ...Well out of our tax but I don't notice that!)

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Just some pictures for those who have been asking for more. Do you think his face is filling out?

'Mummy.. I wasn't ready for my picture to be taken!'

Another update

His eyes say it all, the hand is comforting but not comforting enough.

Another weekend has passed and other chance to catch up on the 'Joel Chronicles'. He is a rascal! Last night he pulled his NG tube out so we ended up at the hospital today for a new one. Unfortunately the silk one hadn't arrived so he has another pvc one. New tube on the other cheek They did all the things they were going to do tomorrow. He is now 8 lb 3 oz but sadly he has only put on 2 oz in a whole week which is not good enough and he is moving further away from the acceptable line on the graph. So, we now have to double the amount of calorie rich milk he is getting through his tube. I also may need to breast feed him every 2 hours and express in between, ( I may not go out much!) His respiration rate is back up at the high end of the acceptable boundary which again is not great! The plan now is to see how he goes with this and review next Monday when he will get the silk tube. ( We don't want to go back again tomorrow for the the tube as he had to have a new one today and we don't want to hassle Joel two days on the trot!) We have to monitor his nappies as he is weeing a lot as part of his treatment for the heart condition ( medicine to reduce fluid,) but this causes his bowels to struggle.

We really do love him... he is such a great kid!

He has found his voice and his smiles (ish)

Not brilliant news all round. We were told today that it looks like the hole is not closing so surgery seems to be the only option. We don't have that from the cardiologist and he needs the echo scan to clarify, but on face value looking at the factors we have, it looks like surgery! Sad.On a happier note Joel is doing lots of cool things. Smiles, talking/noise making, moving his arms and generally being a great baby. He is loosing his hair and getting strange tufts here and there. What a cool cookie. On the whole it's all smiles here and Emily sends smiles to you all. (her teeth are all through!)

And one from Joel too!