Sunday, 7 February 2010

Catch Up

Hi All,

I just wanted to touch base with you all and catch up.

Since we came home from hospital things have been great. James is growing so fast and loves life! It's almost as if he knows how lucky he is to be here! He's a sweetie.

James sits now and is very sturdy on his feet. He's not showing much interest in walking quite yet though.

James' story is being published in 'Baby Surrey' magazine in June so there will be some great CDH exposure from that. We are also trying to start the 'adopt a hospital' here in the UK and are in the process of putting together some media.

For now we thought you may enjoy a few pics....

Love to you all xxx

Sunday, 3 January 2010

Re-herniation, PICU and Update

Hi All,

Well goodness me what a time it has been! I'm sorry for not posting before but this has been one massive whirlwind!

I still check on the blogs all the time and ove to read of the progress of babies and angel families. My thoughts remain with you all and I hope you all had a great Christmas.

Up until around the middle of November, things were great. James was flourishing and being a total sweetheart, a very happy and content baby. We noticed a slight change in the physicality of his breathing but thought little of it, we thought it was probably due to a tight diaphragm, we went to the doctor who assured us there was nothing to worry about. Things however started to worsen and so we ran James up to A & E who told us it was the beginnings of Bronchiolitis and not to worry because he was still eating well and his O2 saturation was 99.

Then he got poorly, very poorly and very fast. He went from having a cough and being slightly whiny to going limp and tired in the space of a few hours. He was admitted to hospital where he was treated with RSV (bronchiolitis). There was an outbreak in our area. They did a routine Xray and boy what a picture!!!!! James' intestines were all back up in his chest. He had been living with a full hernia. He was not intubated but very ill and extremely tired from having to work so very hard to breath.

After a few days at our local hospital, and thanks to a very pro-active doctor, we were rushed up to St George's on blues. On arrival James deteriorated nearly instantly. He was peaking 40 and was limp and lifeless, we were sat in resus date the worst and hardest hour of my life!

James improved and after 3 days was taken back into surgery for repair no2. This times Mr Nicolls had to add in a patch.

James was extubated three days later and tolerated food again after 4 days. He was such a fighter and we are so indescribably proud of him.

On paper this sounds one hundred times less painful than this part of the journey was. In all honesty I felt pain in a part of me I didn't know existed, I had nothing left to give but yet wanted everything to give to help our amazing little warrior.

CDH is an unknown quantity and we continue to work to solve this.

James is home now and doing great. Thank you for your prayers.

Praise God

Beth xxxx

Wednesday, 2 September 2009

Hospital Appointment, more on the cause of CDH and pediatrician ECMO in US opinion...

Hi All,

firstly I have to report that they think James is doing 'Great'!! He is gaining weight and growing on a par with a 'normal' twelve week old. His development is right on track and he 'looks very good'. Yipeeeeee! It feels like I've recieved his first 'excellent' on a school report. So proud of this little boy. He fills me with Joy at least 100 times a day. Well done baby boy!

They took a chest Xray to monitor and it looks good but we'll know more about that at Mr Nicolls clinic on September 15th. Generally he is doing well though.

It was strangely nice to be at the hospital today. Familiar and nice. I guess this was the place this journey began.....and although that journey was so hard, it gave us the most precious gift in all the world.

I had some really interesting conversations with our consultant and pediatrician about CDH research and treatment. They would support any independent research we embark upon and will make the geanologist available to us. They also gave us the name of the person to contact to receive medical advice and expertise. They suggested that more research needs to be put in to causes as well as cures.

Before I write this next paragraph please be aware I do not want to offend ANYONE! I feel it is only fair to share things like this to help CDH talk, evolve, learn and STOP!!!!

We had a long discussion about the vast differences in treatment between the UK and USA. The pediatricians here in the UK are highly concerned with the way US babies are treated. ECMO is only a last resort in very few babies here in the UK. It is very, very rare for a CDH baby to be transferred for ECMO here. Why then is it so common in the USA. With the CDH community hit so badly at the moment, I really think we need to be asking questions....why is the UK survival rate 70-80% in 2008/2009?????? What are the differences.

Please don't get me wrong, I am really NOT criticising the medical staff who took care of our beautiful babies....they are amazing and I genuinely believe they are doing the best they know how with each and every baby. I just want to make sure the 'norm' is really the best!

I'm really sorry if my posts are intence and questioning recently. I'm throwing thoughts around, trying to make sence of 1000 things! I've watched too many friends go through the worst possible thing for a parent to bare and I want to change things.

As I said before, please don't take anything with offence......I'm thinking out load.

With love to you all

Beth xxx

Tuesday, 1 September 2009

Is Nitrofen causing CDH????!!!!

Hi Guys,

I'm absolutely determined to get more research going and have been trawling the web!! It seems there are hundreds of medical journals linking Nitrofen ( a prohibited herbicide ) with CDH. In FACT (and this makes me steaming angry) in order to try and realise a possible cure for the condition, they induce CDH in rats with Nitrofen. They know that feeding Nitrofen to rats on day 8.5 of gestation will cause its babies to have CDH...hmmmmmm!!

Now I kind of get why this isn't public;y discussed - Nitrofen after all is illegal in the U.K and USA but I'm wondering if there is a black market for it somewhere or if one of the components in Nitrofen is common in another, widely used herbicide or pesticide? I need a chemist or chemical analyst. I'm on the case. As of tomorrow I'm making it my Erin Brochovich type mission to look in to this.

Right now I'm thinking ..... how dare they know of a cause of CDH and not make it SO public that all the laboratories in the world aren't researching further.

Whilst researching I also found this....and I quote ''Antenatal steroid therapy, by suppressing pulmonary ACE activity, may reduce the risk of pulmonary hypertension developing in human newborns with antenatally diagnosed CDH.'' That's right....and were you offered this???????? I certainly wasn't. Basically, steroid treatment might help CDH babies with their pulmonary hypertention.

If anyone knows anything please please please help me. xx

Monday, 31 August 2009

Angel Ireland & Fighting Max

Hi All,

It pains me tell you that beautiful Ireland Rose lost her CDH battle yesterday. Please pray for Chanda and Mike, may they find peace and purpose as they water the earth with their tears. I cannot believe another sweet baby has gone. We REALLY need to find out what's causing this terrible defect.

Baby Max is also fighting really hard right now and needs our Urgent Prayers!! He was just about ready to be extubated when a major setback caused him to require ECMO. May he continue to be a little warrior.

Please pray folks....the CDH community needs you!

Lots of Love Beth & baby James xxx

Sunday, 30 August 2009

Pondering, Praying & Giving Thanks

Hi all,

Sorry its been a while. We've been establishing a routine and getting back to the grind.

Firstly let me tell you baby James is astounding everybody and being a little dream! He is much bigger and fatter now and playing little games. He has the most beautiful temperament and smiles non stop. He adores his Daddy. We cannot believe how blessed we are to know him and thank you will never be enough! We have a neo-natal medicine check up on Wednesday so I will report on his health after that.

I'm sitting here in floods of tears having just read Jackson's blog. It seems totally unfair that he is not with his Mummy & Daddy, doing the things that James is. I'm not sure its possible to miss someone you've never met but there is a genuine hole in my heart where baby Jackson should be. Candice and I were in touch during her pregnancy and I was so sure these little guys would grow up to meet each other and swap 'pirate stories' about their scares. We love you Candice, Rob and Angel J. We pray for you......I just wish there was more I could say!

Now that we are settled into life at home I'm really keen to step the 'CDH work' up a gear! So far we have planned to run the Nike 10k next year along with another couple who are great friends of ours. We will obviously be raising money for CDH. Bearing in mind I'm a singer, we're also extremely keen to organize a fundraising concert - if anyone has any ideas, please send them my way.

Always remembering Maxton, Kaden and Jackson.

Lots of Love

Beth & baby beautiful James xxxx

Wednesday, 12 August 2009

Baby Jackson & Update

Hi All,

Firstly let me say how sorry I am to hear that sweet baby Jackson has lost his fight with CDH. This inspirational little boy touched the earth with his bravery & this world will be a worse place because of his loss. Please pray for Candice and Rob whose strength is astounding. May they find peace.

Mike & I have just returned from a week away in Norfolk. It was so lovely to be away as a little family! James was a dream and loved spending so much time with his Daddy. He seems to have come on so far in the last 7 days & he experienced some memorable 'firsts'. James went to the sea, saw a castle and discovered his fists!

We are still having weight gain issues. Having spoken to the peadiatric diation we now appear to be on a better track and have a deeper understanding as to why this has occured. James was given TPN (introvenus food) for a total of 3 weeks. This causes blockages in the liver which can effect the absorption of food, the liver function will improve but this can take a while. They have therefore resorted to a full diet of Infatrini milk - a high calorie prescribed milk. Hopefully this will help him catch up.

I feel I should also share about his asymetric stomach. Following the surgery, James has a larger left side abdomen than right. I spoke to the surgical registrar about this today and he said it's really common following CDH remair surgery and it is caused by a weakening of the muscles because they have been cut. This will also repair itself in time.

I'm surprised that issues which appear to be 'common' in CDH babies are not published and offered as information to parents. I therefore have decided to take this in hand and produce a simple 'post operative' CDH fact sheet. If any issues have arisen with your little CDH babies following their operation, please can you drop me an email so I can add it in....thank you!

Other than the above, James is a wonderful little boy and my only regret is that he'll never get to play with Maxton or Jackson, or in fact any of the CDH Angels. We remain grateful every day that we were blessed with the gift of watching James grow.

Much love to you all xxx