Monday, December 31, 2007

Happy New Year from Kaden!!

Happy New Year - From Kaden and the 2 girls in his life,Brooke and Regan xx

Kaden in 2007

kaden at Nannys

Next Plan

The week before Christmas we had a meeting with the surgeon and the plan is Kaden has had the NG tube for 5 months now so they are going to remove it and do a G tube instead and a fundalplication at the same timeto stop his reflux.We are dreading this as its another big op for our boy to go through and a weeks stay in hospital with sometime in HDU.This is booked for the Friday 4th January 2008.There's one thing about the g tube i'm looking forward to and thats getting rid of Kadens nose tube-so we can see our little boys face properly!

Meeting with the Surgeon

We plodded along with the continual feeding by the pump,but Kaden would become really unsettled and arch his back and kick his legs early evening and during the night.I spoke with the Dietition and she said she'd call us back.
When she called back she said she had spoke to our surgeon who would like to have a chat with us.

Still Struggling

Kaden still stuggled to put on weight so the next plan was continuis pump feeding for 20 hours a day which seemed to work for a start then during the night he seems to be more unsettled and is sick a good few times.
Kaden was back in hospital again on the 20th November as he was really unsettled that day,so i booked an appointment at the doctors.She took one look down below and sent us up to A&E as Kaden had a Hernia.
Kaden stayed in that night and was operated on the next day and let home the following day!
What Next!!

Back in Hospital

In November they decided they would try feeding Kaden overnight smaller amounts every hour by a pump to see if that would stay down better.We stayed over night and i got shown how to use the pump overnight and we were to take the pump home with us.
The following day they did a bareuim meal on Kaden to make sure his stomach was where it should be and Thankfully it was.

Feeding Time

Once at home feeding time became a nightmare.Kaden within 2 weeks wouldn't look at a bottle so every feed became a tube feed.He had to be fed 4 hourly even during the night as he was struggling to gain weight.We went to the Neo-Natal every week to have him weighed and sometimes they would check his blood gasses which seemed to be fine.They changed his milk to SMA High Energy which had more calories in each carton.Even then he still seemed to struggle.Between one hospital appointment and another they upped his medication as he has real bad reflux and was losing alot of his feeds.I'd stand for 3/4hour tube feeding during the day and 10 minutes later the whole feed was up again.

Daddy Bathing Kaden

Once home and settled Mike gave Kaden his First Bath at home - which Kaden seemed to enjoy!

Kaden coming Home

Mike wanted to take Kaden Home in A Hummer Limo - so thats what he did!

Not that Kaden noticed!!

Kaden's Next Move

Kaden was moved after a week in HDU and moved into the pre discharge room where he stayed for a further week.Kadens Feeding not going too well as he gets tired easily so they are doing 1 tube feed to 1 bottle feed.He wasn't coping with that so we gave him 2 tube feeds to 1 bottle feed and the most he took from a bottle was about 50mls.

They spoke about letting Kaden home with a NG tube as he was taking forever to feed,they had him on medication for reflux and gaviscon in his feeds.

Kaden was finally discharged from hospital 6 weeks to the day he was born Wednesday 5th September 2007.

Kaden's 1st Family photo

Kaden's 1st family hug without the c pap on - which they removed for 5 minutes for us to give him a cuddle while we were all there! We' re blowing oxygen out of the green pipe towards his nose and mouth.

Try,Try and Try again

Time to try Kaden off the ventilator again,this time after a few attempts it was time to change his machine to the c pap machine which Kaden remained on for about 2 weeks.

Friday, December 28, 2007

Kaden Our Fighter

One Step Forward & Two Back

We took each day as it came - About a week after Kadens operation they tried to wean him off the ventilator,but were unsuccessful.His Blood gasses kept deteriorating to an unsafe value so they put him straight back on the ventilator.

Thursday, December 27, 2007

One Day At A Time

Each day brought its ups and downs for Kaden from Day one.Post Kadens operation they said the first 48 hours were crusial ,the surgeon said that now all the organs had been moved out of the chest his main concern was the way the blood was pumping to the heart he hoped that it wouldn't start shunting to the duct that is suppost to close at birth and could cause problems.

Thankfully this didn't happen and the first 24 hours seemed to be stable.Then the following 48 hours Kaden seemed quite unstable with what looked like a fluid build up in the chest,so they removed some fluid to check and make sure that it wasn't a fluid which they called kyle which can be hard to treat and would mean stopping feeding him for a little while,and starting antibiotics which they did anyway.

They did some x-rays over the next few days to find what looked like air bubbles in his chest - and they wanted to investigate further.So they put some dye down Kaden to find out if any of his bowel was still above his diaphram which thankfully was not!

We think when they took some fluid from his chest it had caused the air bubbles.But also Kaden did have bugs growing in the line in his neck so they removed the line.

Kadens Stay In Hospital

Kaden spent 6 weeks in hospital,4 of those he was in Intensive Care - with 1 step forward and 2 back.He had his first Life Saving operation at 1 day old to repair the hole in his diaphram and move all his organs back down below where they belong.In his chest he had his stomach,his spleen,left lobe of his liver,bowel and intestines which left his lower half of his tummy very sunk in.Kaden has one reasonable size right lung and a small left lung.

This is a picture of Kaden after his life saving surgery which lasted 5 hours(The longest 5 hours of our lives)

Kaden's Long Road Ahead

This is Kaden roughly 2 hours after his arrival by c-setion on 25th July 2007 weighing 5lbs 12oz at 39 + 1 weeks gestation-he's on a ventilator and all wired up.

Kadens Birthday Wednesday 25th July 2007

With a date set for delivery Wednesday 25th july 2007 - We headed up to hospital in tears at the unknown of what lay ahead.Once we arrived at the hospital i was prepped for my c-section which was scheduled for the morning.We had to think positive thoughts for the sake of our other 2 children,who were desperate for their baby brother to appear.We also had to explain to our 2 girls how ill their brother was and might not live on his arrival - as no one could give us the answers until he was born.

Thankfully Kaden entered the world at 10.41 a.m weighing 5lbs 12 oz and managed a little cry - before being rushed off to the neo-natal unit.

They told Mike they would call in an hour or so for him to go and see the baby.While i was in the recovery room Mike eventually got the long awaited call about 2 hours later to go and see our son.By this time the girls had been dropped off at the hospital to see their brother for the first time,the moment we had all been waiting for.
Our special miracle who was diagnosed with CDH at just 18 weeks into gestation (in the womb)

Diagnosed date:26th February 2007

Next Step - 16th March 2007

We had an emotional journey that your worst dream as a child did`nt come close to explain the fear of which lay ahead. For the next 5 months we were scanned every 2 - 3 weeks to check how well the organs were developing and more significantly, if any more organs had moved up into the chest.The sonogragher also did a measurement of the head to lung ratio-and said the baby was 1;4 ratio and anything under 1 was normally not good.She also said it was the only to give us a ruff guide as to how things looked for the future at birth and things could change between now and the birth. They also examined the babys heart as it had shifted over to the right because of the obstruction in his chest.Unknown to us the month before he was born the sonographer said she could see something else in the chest,but couldn t make out if it was lung tissue or what it was.
Our next step was a 'MRI' Scan which would give us a better idea.We went for the 'MRI' Scan 3 weeks before he was born - but didn't get results till the week before he was born,due to the fact one of the doctors was on holiday and there had to be 2 doctors go over it thoroughly.
Then our worst nightmare came true - there were more organs in the chest pushing on his lungs and leaving little room for his left lung to develop.

Wednesday, December 26, 2007

Shocking News

We went to the hospital on the 27th feb to have our scan confirmed.The sonographer told us our unborn baby had a condition called diaphramatic hernia - which meant there was a hole in the babys diaphram at the left hand side,which the babys stomach had came up through and was now in the chest obstructing the growth of our babys lungs.He told us the baby had a 50/50 chance of survival at birth due to the fact all babys are different and they can never tell until once they are born how many air pockets they have in their lungs to breathe on there own.We were painted a very bleak outcome.He said our next step was an amnio to check if our baby had any other problems,and depending on the results they would stand by any decision we made - he said 1 in 4 would terminate - which we would never have considered unless our baby had any other abnormalities.We then booked in for the amnio to be done the next day- and thereafter we had to wait 2 or 3 days for the 1st results to come back-which were fine and then 2 weeks for the rest,which seemed like forever!!Thankfully the came back fine too!!

Finding out your baby has Cdh

We found out our baby had Cdh at a 18 week gender scan - which was very emotional to say the least!I had travelled to a different city to find out the sex of our child to be told our unborn baby had a defect which could be sorted.
I returned home in bits to realise it doesn t matter the sex of your child - as long as they are healthy!!My problem was i cant wait and having 2 girls already i was desperate to know!
The following day i was booked into Aberdeen maternity for another scan to confirm the defect found and for a chat about the condition and what to do next?