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