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

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

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

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

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

Time Flies....

First play time

The aftermath of night feeds.....

First outing to a coffee shop.....where else ;-)

Smiling at Daddy first thing in the morning

Hello All,

Wow, I cannot believe our little boy has been home for 2 weeks tomorrow. I can now see why people say you wake up and they're 18! SLOW DOWN please....I want to take in and enjoy every single minute with beautiful baby James!!!

Things really are better than I ever can imagine and I love being Mummy more than anything in the World. I love our little family and we have a wonderful life. I cannot express how grateful we are that God has blessed us with this outcome.

James has settled well. He feeds every 4 hours at night and 3 hours in the day. We are still having to 'top up' his feeds with a bottle after he has breast fed but it seems to be working as he put on 8oz this week. Yipee.

He is a very happy little baby and loves watching....well anything! He's really nosey and I can't think where he got that from!

Anyway, thank you for checking in, we love to share this journey with you. Please continue to pray that many other CDH families can bring their beautiful babies home or at least find peace in the blessing of such special children....we can learn so much from each and every one, the angels most of all.

We are so happy and hope you enjoy these pics. xxx

Suprise

Hello Everyone...

My deepest apologies for the delay in 'blogging' my phone has been down since the weekend so I haven't been able to access email to update my brother. You guys have been so great in following the blog and giving us such wonderful support and we are so grateful. We certainly haven't forgotten you!!

This has been possibly the craziest and most wonderful week of our lives.

Following the previous posting we returned to the high dependency to find that James had not been returned onto the Cpap ventilator. The nurses had decided to only have it there for 'rescue' in case he gets tired. James rose to the challenge and although he needed a few ours the following day it was bye bye Cpap FOREVER by Friday.

Then...he started thinking that milk really is yummy and demanding more and more of it. Everything they put through his NG tube into his little tummy he was eating! So they upped him by 3mls every 3 hours until he reached full feeds at 6am on Sunday morning. Throughout the night on Friday, Saturday and Sunday I was attempting to establish breast feeding which we FINALLY mastered at 3am on Sunday. James was so happy to be feeding well. Because he was clearly tolerating his feeds, by 9am Sunday morning we had said goodbye to the NG tube and hello to 'on demand breast feeding'. Things really do move quickly once you're on the home stretch.

They decided to let us 'room in' with James on the Monday night so we could establish feeding as would be achieved at home and to get us used to the lack of monitors. We loved this! We were with our baby boy with NO tubes and no one watching our every move. What a moment!

On Tuesday however we had a little bump in the road. Overnight James had managed to loose 100grams so they needed to monitor his weight a little closer. They decided that if he put on sufficient weight overnight that he could.........................wait for it.................go HOME!!! So as you can imagine we fed, fed and fed our baby boy, so much so that he did 10 poo's in a day.

Throughout the day on Tuesday and Wednesday we were taught how to bath, give mediation, recusitate and monitor baby James. Then there was the weigh in and.................. he had gained 45 grams. Thats all he needed and was DISCHARGED.

After 22 days in Neonatal Intensive Care,
3 Days in High Dependancy,
2 days in Special Care,
2 days - rooming in,
a total of 29 days on Hospital out baby has come home!

We are so proud that James is such a fighter. God has given us a miracle and we will be thankful for him every day. The staff at St Georges' have been wonderful and we will remain indebted to them always - Thank you!

We have made some great friends throughout this journey and are so grateful to all of you for your thoughts and prayers - they certainly got us through this roller coaster.

Thank you to all of you and I promise to post photo's and and update tomorrow. As you can imagine though we are totally shattered.

So delighted to sign off as a family at home..........

Mike, Beth and Baby James Michael Reeve