Cheeky Chappy: Kaden, Another survivor!

Hello all,

We had this email and pics sent from proud parents, Mike and Gil. As you can see, Kaden is an adorable boy who faced some of the challenges that Imogen did. He is yet another success story and we hope people reading this will take something positive from their story. One of the pictures shows Kaden hooked up to a ventilator like Imogen and it brings back memories. We are sure Kaden will go from strength to strength and we wish him and his parents lots of love and luck for the future.

Baz

Hi,

I have just come across your website and am delighted your ‘special little girl’ is doing so well! Our son Kaden was born in July this year with the same defect- and like you we were painted a very bleak picture. Kaden is being fed 20 hours a day by a machine with high calorie milk as he is struggling to put on weight, and wont look at a bottle as he has really bad reflux.
I have attached a few pictures of our special boy who we named Kaden – after finding out at a 18 week scan how ill our boy was and had a 50/50 chance of survival at birth, Kaden means ‘fighter’ and he certainly has had the biggest fight of his life.
I’m so glad I came across your site, as this gives us hope for the future for our boy Kaden who will be 5 months old on Xmas Day – and I hope he does as well as Imogen.

Best Regards
Gil

Mickey Peg (He's the man!)

Dancing on at Aberystwyth

Don't forget, you can double click to enlarge pics

Cardigan Bay

Swimming at Hexham

The Cotton Crew

Mickey Peg

Now then troopers. It's been a while, Google will be booting us out for lack of blogging. You know how it is. All the best intentions, time is scarce but I will make more of an effort.

Any road, what's been happening in Immie's life? She's ace in case we hadn't said before. She has recently been back to hospital and had her gastrostomy removed and a new "Mickey Peg" put in its place. Much easier! The peg is like an air bed valve and hooks up to a syringe for her feeds and medication. It's like going to refil with petrol, but alot cheaper (don't get me started on the price of fuel).

No she is still not eating. The occasional bite of chocolate or a yoghurt is all she will eat but it's generally through bribary to leave the table or go and watch TV. If anyone has any ideas please get in touch but I think we have tried everything. Come spring, we are thinking of starving her, with the aid of the hospital to keep an eye on dehydration.

She is beginning to string words together such as "that's the same car" was what she said on seeing one the same as ours.

We visited the Rainbow House at Hexham the other week which we went to last February. It's a charity and the idea is to give parents a respite in looking after terminally ill children or kids with lifelong illnesses. I think really Immie is no longer in either catagory but we were asked and we did say that we didn't think we were worthy. Anyway we went and had a great time.

This weekend we went to see our cousin. The Cotton crew, (weren't they an 80's band - "I just died in your arms tonight?") David and Sarah and their offspring, Robbie and Alex who live near Manchester put us up for the night and used to accomodate us at short notice when Immie was in hospital. Sarah tortured me for my own benefit?!?! More of that another time, use your imagination. David is a far better drinker than me and can pack it away, well he did last time we visited.

We watched England against S.Africa in the rugby, total cack! Then watched Villa get trounced by Scum bags on MOTD, double cack!!

Then on Sunday went to the park and Manc airport to let Immie watch the planes taking off and landing. Sarah went to sleep, it's just not exciting when you live so close to the airport.

See pics of our fun weekend.

Anyway, 9 weeks until christmas!!!

Thanks for tuning in,

Baz, Linz and Immie Dee Massive

September Update

We are away on our hols again this time in a static caravan in Wales. Fantastic weather all week even managed a day on the beech and some time paddling in the sea much to Imogens great amusement. There was a caberet at night on the site which Immie loved dancing on the dance floor to sometimes having the dance floor to herself. Some late nights had by all.





Monday 15th August

Immie started play group today. She will go one morning every week. I left her there for an hour which was hard for me but she never even noticed I had gone as she was having too much fun and when I left she was playing with some water with other kids. It was really nice as she is know managing about 8 hours day off her oxygen so she went to the group without it and could run around with the other kids without me following her closely behind. Next week I am planning on leaving her for the full two and half hours, think it will be good for her. I was hoping without me being there she may join in with snack time with the other kids and copy them eating, but she didnt do it the first week. Her eating at the moment is virtually nil and seems scared of putting things in her mouth now as food goes to her mouth but not in. Lots of perserverance and patience will get her there eventually.

August Update

Well its been a while since we updated blog, no excuses just dont know where the year is going!!! We have all be up to lots since last update. had a brilliant day out with good friend Sharron and her daughter Laura who Imogen loves to bits and laughs at everything she does, we went to gullivers world in Warrington which is a fun park for smaller kids. Imogen cried on the first ride she went on but by the third ride couldnt get her off. It was a really good day and well worth the money. Planning on going again in few weeks before it closes for the winter. Have some photos of the day but Baz will need to put them on and he is working.



Towards the end of August Immie told us she had had a poo in her nappy two days running, which was brill as she is happy to sit in it all day long if you havent noticed, so we thought this was huge breakthrough in maybe trying to potty train however it was a one off and she is still happy to sit in it!!!


We have started trying to wean her off oxygen a few hours a day and by end August she is managing about 3 - 4 hours a day off. Thought it would be a long time before she would be able to manage but as with everything she does she has surprised us again.

Immie Dee's latest update.

Since last month we have had alot of mails from people all over the world via Immie's site and thought I'd post a few to look at. This is exactly why we set the site up originally, not to get a pat on the back but to share experiences and give advice where possible. Some we get are sad but most are following more positive experiences after the birth of a CDH baby.We're really chuffed to get letters from people who were born with it and tell us of the great things they achieve.

Hello,

My names Natasha, I'm 24 I was born like Imogen. I was given a 50% chance of living. My doctor says I was put on this earth to do something special, I fought all odds, other than getting short of breath I've always been able to do the same as my friends. I'd like to hear more about Imogen.

I've never known of anyone being born with this type of hernia. Normally they either operate while the child is in the womb or within 48 hours of delivery. My mum had a gut feeling something wasn't right with me when she took me home. Instead of dirtying nappies I was being sick. Within the first week of me being born my mum took me to our GP. He told her "she was an over protective mother with me being her first born, if anything it might be colic". She wasn't happy with the diagnosis so took me back to the GP this time he told her it was beacuse she smoked while I was in the womb. Mum took me elsewhere, the doctor there knew something was wrong. I was six weeks old before they found the hernia. From there I was rushed to Pendlebury hospital in Manchester. I was in there for six weeks. I was left with a shadow on my left lung. I've been having some trouble with my stomach recently they dont think it has anything to do with how I was born but they have to rule that out. I'm currently having some tests. I'll keep you posted on that. If theres anything else that you'd like to know please ask. Take care,

Natasha xx

Hi Barry and Lindsey

Your website and the story of Imogen's birth has really inspired and encouraged us as we are going through some of the things which you have experienced. My wife Toni and I are expecting our first child and at the 20 week scan wewere told that our little boy has a right sided diaphragmatic hernia. We are surrounded by the best fetal medicine experts here in New Zealand and we know they will do all that they can. So we have quite a bit more of the journey to go to find out if our little boy Ethan will make it, but we just want to know that your story has inspired people on the other side of the world here in New Zealand. Yours was a true story about a real family like us and doesn'tjust talk about survival rates and percentages! We hope your little girl enjoys a full life and that you continue to inspire many other people around the world with your story. You can keep up to datewith our progress on our website:http://www.driller.co.nz/blog/?p=78

Marcus and Toni Driller

Auckland New Zealand

Thanks for your email – things seem to be going okay recently and we are really just at the stage of wait and see at the moment, but we are feeling pretty peaceful about it all. Glad to hear that Imogen is being weaned off the heart medicine!Take care

Marcus, Toni (and Ethan!)

Baz - As I said at the top of the page, there are some positive comments coming through. I will post some more soon. If anyone wants to messages passing or questions asking to the above, send them to me and I'll forward them. However, the above mails from the Driller family in NZ have a website to follow Ethan's progress. Have a look and say a prayer for them.

See you shortly!

Baz

Imogen's holiday update

Don't forget, double click the images to enlarge. Why can I never put the piccies tidily - it's the system!

Hi all,

It's been a while. Her gastrostomy is looking to be succuessful - in a physical way. Still nothing doing with her wanting to eat yet even though we keep offering her stuff, but it's of no interest. If anyone has experience of the gastrostomy and failure to eat - please get in touch.

Been on our hols down south to see Uncle Dave, (not real Uncle, friend Uncle - actually he is an Uncle but not to us). Dave lives at Thames Ditton, a posh leafy suburb where beer cost £3.50 a pint. We stayed with Dave for 4 nights and had a great time visiting the area. Unfortunately, Dave's wife; Sim flew to Singapore the day we went, for business and to visit relatives so didn't get to see her.

After Dave's was a trip up to see Nanny in High Wycombe which isn't too far from Dave's. Again we stayed 4 nights, didn't get up to much but chilled and Immie enjoyed playing with Miltie; Nanny's dog.

Don't think I put on the blog previously, but we went up to Silloth with Grandma and Grandad a few weeks ago. We were on a nice caravan park for a weekend. Imogen was dancing nightly and putting on a show of her own for the holiday makers. The park has Foxy as a mascot and Immie loved dancing with the big shaggy dude, Foxy is da man!! Baby Foxy now lives at home and sleeps with her. Then later that week we went to York to see Gaz and Nadia and their new baby; Miles.

Miles is the spits of Gaz but with out the mutton chops and glasses. Great weekend, good sun and plenty of beer. See pics.

Immie also started walking unaided. On the day Morecambe won at Wembley. Was a great day on numerous accounts. It has taken her months of walking around the furniture but eventually plucked up the courage to let go. Go Immie Go! And she does.

Laters

Baz

Immie's 2nd birthday and Gastrostomy op

The pics got jumbled and I can't seem to blend them into the wording - never mind. You know you can double click them to enlarge. Titling them is a pain so you can see for yourself what they are. Compare the 2 between us with the tree last year, haven't they blossomed.

Greetings troops,

Well since the last post Immie Dee has had a birthday and her long awaited Gastrostomy operation.

Her birthday on the 9th was again hectic. It was spread out over the Easter weekend and the weather was glorious. On the Saturday, the day prior to her birthday, she had a tea party for her and 4 other friends. They all played in the garden and then had a the usual kiddy food to eat. Apart from Immie who just played with it.

The following day we had the neighbours - Rudds and James family -round for a barbie. It was the first of the year with the annual lighting of the dry christmas tree - well worth keeping for 4 months. This a spectacular event that gets me and Adam excited. Once the beer has flown and we're all stuffed. Gently place 1 nicely browned 5 feet swedish pine on simmering barbie. Patiently wait for one needle to take hold and watch the bad boy woosh up like... erm a dried out christmas tree. * NB health and safety message, keep kids and flapping wives back and hose pipe at the ready. It's a man thing. Watch for the next blog entry, Adam next door still has his to do, a visual recording will be posted.

Anyway back to Immie - It is her blog after all. So she had a great time and was exhausted by the excitement. On the Monday, her birthday, she didn't wake until 9am. She had so many cards, that after opening about a dozen she got fed up. We spread the rest over the day. The amount of presents were spread over 2 days. Family came (and went, thank God! ; - ) - love you all, don't think they read this anyway). In the afternoon, I cleared off to the footie (Morecambe 4 - Halifax 0) so can't tell you what happened. So that's that. Oh yeah, we took a photo next to her cherry tree we planted on her 1st birthday. You can see for yourself how they have both blossomed in the past year.

Now, operation. Last Monday after thinking we may try Alder Hey hospital, the letter came through with a date. For the following day!! Quick action was taken to take day's off and for accomodation to be arranged at friends near to Manchester (Pendlebury hospital). We went on the Tuesday morning and the op was done in the afternoon. The gastrostomy is a little tube that hangs out of her tummy and we just plug her feeding pump into that. Doddle! Except it's still a little sore when we touch it. We have called it Gaz, so when we want to feed her or put medicine down, we ask for Gaz and she gets it out. Even helping to push the meds in. We'll keep you posted on her progress of eating and drinking.

Immie was unfazed by her 4 days in hospital. She watched loads of DVD's with her head phones on which caused amusement to staff and patients. When we were leaving, she even wanted to stay and kicked up a fuss when packing up.

Think that's it. Job's a good 'un!

T'ra

Baz

Trip to Nanny Bagshaw's

Top to Bottom - Nanny and Immie, Immie doing her own nebulizer, Drinking from a syringe, visiting Grandad Bagshaw and with Emma and Ben

Now then all,

yet again we all enjoyed another trip, this time down to south to Sunny High Wycombe. We went to see Nanny Bagshaw and family, travelling down on the friday and came back last Monday night. Despite Mummy not being on top form healthwise we still went anyway. Paul (step brother in law - if there is such thing) and myself went off on a freebie to watch Wycombe Wanderers play Boston. Whoa! Riveting stuff, but hey, free food and beer and complimentary tickets won in the local school raffle. 0-0 by the way. I'm thinking Morecambe Fc will be visiting WWFC next season. Any road, Immie had a great time playing with cousins, Emma and Ben. Thanks for looking after her during our visit last Saturday. The rest of the weekend we chilled out and did very little. When you visit Nanny Bagshaw she insists on looking after us and not allowing us to do owt. She won't even let me wash the pots. She insists on putting them in the washer. But I know she doesn't trust me as she thinks I will break them. I think I had a bad run off washing up breaking 2 items about 5 years ago. Anyway, I am not complaining.

Still no news on the gastrostomy. I think we will be trying to go to Alder Hey in Liverpool because we seem to be getting nowhere at Manchester. In another 4 weeks we will be going away again. She is a lucky lassie is Immie. Grandad and Grandma Lillington are treating us to a weekend in Silloth at a caravan park. Now Silloth is at the end of the earth plus an extra 50 miles. Think they should rename the place Sloth! Just hope there are good amusements in the park.

Stay tuned folks.

Bazzer

Hexham Holiday

Hello all,

Had a fantastic time up in Hexham in Northumberland staying at a house called "Fernstone", which is a respite home provided by "Rainbow Trust". It is provided to parents with children who have a life threatening illness or who are terminally ill. We were well looked after by a number of staff over the 5 days, they fed and watered us and even did our washing and ironing. There was an indoor swimming pool that Immie loved and a sauna for me. I'm not into swimming, roasting myself and relaxing in the sauna is more my thing. Can you chill out in a sauna?

We spent the week with another family from Sunderland. Parents Beccy and Mark were there with their 2 kiddies; Lilly and Hannah. Lilly was 4 and Hannah was slightly older than Imogen. Immie had a fab time with Lilly, who doted on her. Unfortunately, Hannah has a rare chromazone disorder and is not able to physically interact. She is a lovely little girl and was clear to see she gave mum and dad a lot of pleasure. Lilly had trouble pronouncing Imogen, she said In ja min, or something like that. So she called her "Little Tinker". In her thick Sunderland accent she would say, "L'il Tinka". She'd say, "Does the L'il Tinka wanna play in the toy room or, "Where's the L'il Tinka?" Sounded funny from a 4 year old. It was nice to see them playing well together. Beccy and Mark were on their honeymoon. I bought them a bottle of bubbly to celebrate, Mark to my amusement sank it all himself and didn't offer me a taster. Cheers mate! I'm not being serious dude.

"Rainbow Trust" is a self finacing charity and everyone involved works very hard to keep the house open. We will be sending our donation soon and will try and do some fund raising for them. A big thanks to all the staff who made us feel very welcome.

This is the second time I have typed this post. My darling wife came in and tried to help put the images in place better than how I had done it. She hit a button and all the text and pics went. I couldn't retrieve it. I'm off now to pin her down and with a continuing action of right palm against left buttock, shall replicate a beautiful sunset across Morecambe Bay. Stayed tuned for images of it here soon. Bye for now.

Posting messages on the blog

Hi,
we've had a number of people telling us they tried to send a message on the blog but found it to be a problem. If you have a problem, you can send an email in the contact section and we will put them on the blog.
Immie Dee is coughing her head off at the mo and having rubbish nights. Hope it doesn't get worse...
TTFN
Baz

Message from June and Abby

Hello guys,

Just wanted to say that you have a beautiful little girl and are telling the wonderful story of her life. Imogen looks really wicked.

I picked up your site from the link from Lauren and Avery's site. I got in touch with Lauren when Avery was born as my daughter was also born with CDH in October 2005. She too like your little one is a survivor and is doing well, luckily the only issue we have with Abigail is her weight, at 16 months she is just under 16 pounds, but apart from that she is doing ok.

Just wanted to wish you all the very best and to say how again how gorgeous Imogen is.

Good luck and lots of love

June and Abby x x x

Baz - Thanks for the kind words June and love to Abby xx

Cute pictures

This is Immie with her friend Eliza.

A little angel named Avery

Hi all,
Lindsey found a site about a little angel named Avery who was born in Canada, like Immie with CDH. Avery's mum, Lauren has started this site for the same reasons as us, to bring awareness to diaphragmatic hernia and to offer hope. Avery gave Lauren 17 happy days before being taken away, but Lauren's attitude is amazing, she is a very strong lady. We will be putting a link to her site shortly but you can visit her site at http://laurenziebart.spaces.live.com/. Also as part of the site is links and stories of CDH survivors. This is a site that Linz and I now have in our favourites and are sure to keep a regular update. God bless you Avery XX

Lauren emailed the following:

Dear Barry,

I would be so honoured if you could link Avery's site to yours. Thank you so very much for asking me. I read what Lindsey wrote in Avery's guestbook and immediately visited Imogen's site. She is such a beautiful girl and every survivor I read about fills me with hope that CDH will one day be no more. I read every single word on her site, and it filled me with so many emotions - there was so much familiarity. I wanted to comment, but was unable to find out how, and I want you to know that I am so happy that you wrote. Please feel free to link Avery's website, as my ultimate goal was to share her with the world, and raise awareness of this birth defect that I had never heard of until it touched my life. God bless Imogen and your family. May she continue to thrive.

Love Lauren

Date for Gastrostomy is a no go and holiday

Now then, got at date for the op after pestering for some time. Wouldn't you credit it, it's when we're away. We're a bit torn about cancelling the hol or postponing the op again. Unfortunately, we will opt to do the latter. We are going on a 5 day trip to Rainbow House at Hexham in Northumberland. This is a charity run retreat for parents and ill kids. Not that Immie is ill, but classed as high dependancy due to her oxy and feeding pump and they say we qualify. The people there look after parents while we look after Immie. They make your meals, washing and ironing etc. At short notice it's unlikely another couple could take our place hence our reason we are still going. Last time the hospital cancelled our appointment at the 11th hour and there's nowt to suggest they won't do it again. If anyone reads this, leave a post as we haven't had any yet apart from friends or family, (not that we aren't grateful). Be nice to know people are looking at the site. Th th th that's all folks... Baz

Bronchiolitis Jab is a nightmare

Immie went for her bronchiolitis jab today and she absolutely hated it. She has it every month throughout the winter months due to her being susceptible to picking these kind of bugs up easily. As soon as we walk into the childrens ward and sees the nurse, she knows whats coming. We take her tights off and WW3 begins.
Two nurses grab a thigh each and inject at the sime time. She shut down and went blue. It was like ... "breathe Immie, breathe" moment. She went a blue grey colour. When it was done she looked at me and I just pointed to the nurses and told her it was nowt to do with me. However, it's alot less bother than getting the virus itself, which would be serious.
No news on the date for the op yet, just that we're somewhere on the list. Hope it's soon.
She is trying tiny amounts of food when she feels like it. Banana the other day and she showed interest in a glass of red wine, but I draw the line. See ya.
Baz

Postponed Operation

Bummer! The hospital has sent us a letter to say that Immie's op is being put back. We're disappointed as we had been preparing for it and we have no date as to when it is likely to be. Hope it isn't too long.
Baz

Gastrostomy

Hi all,

Imogen will soon be going to Pendlebury hospital - 25th January - to have a gastrostomy fitted. This is due to her not eating and that the nasal tube is getting a bit of a problem. It seems to be coming up more often when she is sick The process of putting the tube up her nose and down her throat is horrible, Immie hates it.
She will be fitted with a peg straight into the stomach allowing us to hook her feed up to the peg. Hopefully then she will feel more comfortable and be encouraged to feed herself. if anyone has experience of a peg let us know. We are not worried about the peg, just a little about the op, but that's natural I suppose.
Immie is more mobile now and in bed at night when the feeding pump is attached, she easily gets it wrapped arond her neck. It's time to get rid of it.
Immie is well at the mo, a bit of a snuffle but nothing major. just means her oxy tube gets gunked with snot...yummy.
She is starting to say "da da" when asked who I am. Linz is miffed that asking her who she is she can't say "ma ma". Linz is "bu ba". Immie knows Daddy is best! Daddy's girl.
See ya,
Baz