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