Saturday, 20 June 2009

The Rollercoaster

Hi all,

Sorry for the delay in posting, yesterday was a tough day! The night after James was extubated, they tried to give him a break from the Cpap for 6 hours. We were extremely delighted to hear this & the doctors decided on a cycle of 6 hours on followed by 6 hours off. We couldn't believe how quickly this was happening. However, it proved to be too much too soon for little one. He was quite distressed by the end of the 6 hours off & was visably struggling to breathe. The following 12 hours he was exhausted & drained, he looked poorly again & it broke our hearts.

Still being the fighter that little James is, he battled through & is managing well on a 2 hours off 10 hours on cycle. He is retaining his carbon dioxide levels but that will rectify itself SLOWLY over the coming weeks.

James has started feeds! They began on 1ml every 3 hours, which has just been upped to 1ml every 2 hours....yum yum!

This NNU journey really is a rollercoaster. The ups are so high & the lows are almost too much to bear. As James is getting more alert it's even harder to watch him live this beginning in life. We thank God for our little miracle & long to take him home...not many more weeks we hope!

Congratulations are in order for Shawn & Stephanie who gave birth to their beautiful twin girls Brooke & Kamryn. Please pray for them.

Please keep praying for our beautiful baby James.

Mike & Beth xxx

4 comments:

Anonymous said...

Thanks for the update. I'm sorry to hear that James struggled being off cpap for 6 hrs, but that was a big ask. Glad he's coping well on 2hrs off 10 hrs on. Hopefully he'll just keep getting stronger and stronger now, especially as he's getting milk too! What a clever boy, even if it is through an ng tube. Hope we sent card to the right RMcD house. Will be sending something else in post very soon.

Love to you all.

Suexxxxxxxxxxxxxxxxxxxx

Alex & Ingrid Houchin said...

Hi Mike and Beth,
So sorry that James's extubation didn't go so well. Don't discourage though, Alina had 3 failed attempts and look at her now. Having a baby with CDH is not an easy road but James is already doing soooo well- he's on CPAP, which is amazing! What we have learnt from our experience is patience. These little ones are extraordinary and the can achieve miracles but they all go at different paces. James has been through so much already and he is a very strong little boy. Keep being positive, he'll get there.
We are thinking about you.
Big hugs,
Ingrid, Alex & Alina

Anonymous said...

My goodness it's tough for you all. We are really pleased to hear that James has fought through another battle. Starting feeding sounds so positive. Keep fighting on little James!
Best wishes and prayers from Nay family.

allport0305 said...

Stay strong! You're lovely little James is a fighter! He's done so well till now - he'll keep fighting for you.

Thinking of you all
Love Zoe, Paul, Eloize & Daisy