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

Excited over poo!!!

Hi all,

Just a quick update on the marvels of beautiful baby James...

I don't really know where to start, so much has developed in 2 days. Yesterday when we went to help with James' first nappy he had done a poo. To most new mums and dads that's a reason to wince, however for us it shows so much progression. It means James' bowels are now working and it meant mummy & daddy could do a real parenting job. It's crazy how excited you can get over poo!!

Next, James was taken off morphene & swapped to paracetamol. He keeps sneezing & hiccuping now. So sweet!

When it came to afternoon cares, they decided to weigh little boy. Because they were moving all the wires anyway, they decided I could have a cuddle. This was certainly a moving experience. Baby James curled his little body & legs into me and settled into the most relaxed sleep I've seen him have. He certainly knew he was in my arms & we both loved every second of it.

Finally the biggest progress... On arrival to the unit this morning we were notified of James' extubation. This means he has been taken off the ventilator and placed onto a Cpap machine, one step closer to breathing on his own...clever boy! Mike & I couldn't believe how fast he's progressing.....a real little miricle.

We're hoping to start him on a little bit of milk tomorrow so we'll let you know how that goes.

Lots of love & thank you for your love, prayers & support....keep them coming.

Mummy Beth xxx

The latest on little James

Hello all,

Well baby James is incredible!! He is doing so very well! His 48 hours post op have been on the whole very good. He had a minor blip about 6 hours after his operation when they discovered his red blood cells were very low, causing his stats to change. However, following a blood infusion & some fluids he returned to normal pretty quickly, since then his blood gases have been good. They have successfully weaned his venilation pressure from 20-19 and he is on .25 oxygen.....very good!

Now for the exciting part.....they have turned off his paralytic drug. Over the next 12 hours James will start to wake up!! He is doing so well!! Mike and I are so excited to see his little eyes open & watch him respond to us. He's likely to become alert very late this evening so I don't think we'll be going to bed ;-)

James never ceases to amaze us. He is such a 'little warrior' as Daddy calls him! God is certainly unfolding a miracle in front of our eyes & we are so thankful!

Please continue to pray for baby James' recovery, we yearn to have a cuddle & feed him!

Thank you again for all your love & support

Mummy & Daddy Reeve xx

Post Op Update

Hi all,

Baby James has done wonderfully. His surgery went well & he is stable and so very brave! The spleen, stomach, small intestine & a few loops of the large intestine were up in the left side chest cavity. This is not unusual and everything was moved down successfully! They did not need a gortex patch for the hole but did need to sew the muscle tissue to his rib, again this is fairly common during this nature of repair. The surgeons seemed happy with how it went and are confident about his recovery. Obviously this is majour surgery though so we need to monitor all his bits & pieces carefully. The surgical team will check on him daily. We are so thankful to the wonderful staff here...they are nothing short of amazing!!

Since his op James has been stable & they continue to wean his care as is appropriate, he is tolerating things well at the moment.

I have uploaded an x-ray of him post op with everything in the right place....doesn't his chest look lovely & clean now?!

Today was one of the toughest of our lives & we are so thankful to God for our miracle baby boy. He is amazing beyond words. We are so proud of our little warrior.

The next 48 hours will be a chance to see how little James copes with his organs in the right place. We will let you know how this goes.

Mike & I are exhausted and delighted at the same time. We couldn't ask for more from this inspirational little chap! He is already showing Mummy & Daddy how he fights. The last 3 days he has been through so very much & we adore him more than we ever imagined! We will thank God every day of our lives for giving us the most special gift.

Thank you so much for your prayers everyone! Please keep them coming, he has some way to go before he is totally better but we have total faith that the miracle will continue.

Ashley-James wanted to model baby
Maxton's bracelet for you!! See picture ;-)

We are off to say night night to our beautiful son.

Thank you again everyone!!!

Mummy & Daddy Reeve xxxx

IN SURGERY

little James has just gone into surgery. Beth would like all the prayers you can muster for the next few hours!!!

Baby James Update

Hello all,

Firstly thank you so much for your kind wishes, prayers, love & support....James is a very blessed little boy & we have been so touched! We can read your comments even though we can't update the blog remotely...my brother (uncle James) is doing a great job for us though!!

Baby James is being an absolute star. His stats remain very stable & they've only got him on 27% oxygen (room level is 21%.) For those CDH nerds....we have managed to keep him away from ECMO & nitric oxide alltogether so far....praise God. If he continues to remain stable overnight they are going ahead with his repair surgery tomorrow (Friday) at 1pm. We really need your prayers folks, they have certainly worked this far with his night nurse calling him a 'miracle baby'. Please pray as hard as you can. I have a new understanding of love now & am really yearning to take our perfect little boy home. In short......please pray!!!!!

Thank you again for all of your support & love and we'll let you know asap if surgery is going ahead.

God bless & night night.

Beth xxxx

Stable and doing well - first pics from the hospital

Baby James is doing well. They've now moved him on to a conventional ventilator and are gradually reducing the level of support they're giving him which he is tolerating well. If he continues to respond as well as he is now, they have tentatively proposed Friday afternoon for his repair surgery, but it is still too early to say with any certainty. Now the moment you've all been waiting for... the pics: