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


Baby K Mama said...

That sounds like a great idea! And you are so right- if something is so common for a CDH baby to have- why haven't we heard of it. I have just started a new wesbite, this site is to help the new parents of CDH babies with what they are about to face and to help the experienced ones with their new findings and hopefully for them to help the newbies as well. I would love to post your fact sheet on my website if at all possible. I have posted your blog on my new site.. please know this is not an organization... but if you would rather I take the blog off my new website please let me know...

Anonymous said...

Lovely to see the pictures of you and baby James on the slide show, what a cute little boy he is!! How organised to have done a holiday too.
Now we're back from a rainy week in Center Parcs, and you're back, we'd love to come for a little visit :)

See you soon, hopefully,
Em and Sue xxxxxxxxx