Pictures!

Noah in Rotterdam, just after he was allowed out of quarantine.

Proud mum and baby

In bed, now with clothes on and a few toys (he doesn't use them yet, but nice for the parents)

Close up :-)

Noah gets to sit on our laps more often now. And he opens his eyes more often and fully.

Grab the camera!

And Noah's second bottle. He is not drinking that much yet, but practice makes perfect.

Proud mother.

Well, that is about it for today's update. John (Louise's dad) has arrived safely from Wales with a massive suitcase full of baby clothes, so he is now washing and folding all the stuff. We have to keep him busy after all.

Enjoy,

Thijs

Which one first: The good news or the bad news

Friday the results of the 'surgery' came back.
The doctors examined Noah's throat for a closer look at the blockage and his lungs to check how they have developed. They came back with some good news and some less good news (while not exactly bad not very entertaining either). Pick your order, I have listen the bad news first.

Bad news:
Noah has some problems with the airways in his lungs (trachea). Due to the amount of fluid and pressure in his lungs before birth, the trachea have been stretched and are a bit soft and weak. This means that that they are in danger of collapsing, all though the doctors think the chance of that happening is very slim. To prevent this from happening Noah will have to be on a ventilator, which will give a tiny bit of constant pressure to keep his lungs 'inflated'. For as long as he needs it, so until the trachea are strong enough. This could take 6 months, during which he will have to stay in the hospital. So a long long time until we can take our boy home.

Good news:
The doctors found that Noah has got vocal cords. They are clearly visible, but they are fused to the blockage in his throat. However they think they can leave them intact while removing the blockage, so that would be great! He may not have a very fine voice because some scarring will result on the vocal cords. Anyway, Bob Dylan made it big without being able to sing.
The actual operation will have to wait at least until Noah is of the ventilator, but most likely until after he is a year old. This because he will be a bit bigger by then, and thus making it a bit easier to perform such a delicate operation.

Other stuff:
We visited Noah together yesterday, the first time Louise was able to visit since he was moved to Rotterdam. It was very nice, because we were allowed to take clothes, and dress him so he finally looks like a real baby. After that Noah got to sit on Louise's lap, so they both look happy as can be :-). I'll try to post the pictures tonight.
Not completely Noah related stuff: Lilo has returned to us from an extended stay at the doggy spa and fitness center. She is looking fitter then ever, but we spoiled her rotten last weekend, off course. Louise's dad will arrive today to help out a bit so we can spend more time visiting Noah, or maybe sleeping ;-). Probably a bit of both.

Thijs

Finally - an update

Hi everyone,

We have been quite busy, so no updates for a while. In the last few days a lot has happened, so let me get you up to date.
First of all Noah got moved to Rotterdam, to the Sophia Children's Hospital. He had a good move, but had to be quarantined upon arrival. We hadn't realised this, but the Netherlands is very worried about MRSA, a multi resistant disease that often causes chaos in hospitals. So until he is checked for this disease he has to be in a special room, and the nurses and doctors have to be almost completely suited up (mask, gown, gloves and hair mask). This doesn't affect Noah at all, it is just very strange to see.
They have changed a few things in Rotterdam compared to Leuven, which was a bit worrying, because they didn't tell us much about it. I had a long talk with 4 doctors yesterday in which they explained all the plans, reasons, etc. This helped a lot to take away our worries. They also told me they are going to have a look in Noah's throat today (Friday), to examine the blockage in detail. Based on the results they will be able to tell us something about possible treatments.

Louise has been in with mastitis (milk gland infection), which is very painful and gave her a very high fever. So she hasn't been able to visit Noah in Rotterdam yet, and she really misses him by now. She has been prescribed penicillin, so hopefully she will able to visit after the weekend. I have had to go back to work, so that also meant less time for me, but I can visit Noah after work or in the evening.

Hopefully more news soon,

Thijs

Hot Off The Press!

We're just back from Leuven where we were told that Noah is getting moved to the Sophia Ziekenhuis in Rotterdam on Tuesday morning! :) We're so very happy and completely over the moon with how quickly Noah has improved. His condition is a testament to how well Leuven staff have taken care of him in order that he be moved so quickly.

As if that wasn't special enough, Noah got daddy cuddles today for a full hour. Plus Noah has been on mummy milk for the first full day and is managing to digest it. So he is now sure to grow up safe and big and strong.

We're off to Leuven early tomorrow as I need to have my battle scars seen to by the nurse! This was just a quick post to share with you all the fantastic news. I don't know if we'll sleep we're so excited..... ermm, actually it will be no problem, we're both soooooo tired. Slaap lekker allemaal. ;)

Noah photo

Here is our Noah, showing off his Welsh Gold hair colour! At the moment we're only allowed to touch his hands/feet or place our hand on his head or tummy.
However mum and Noah had a big day yesterday where we got to cuddle each other. Noah was gently lifted by two nurses and placed on my lap. His eyes opened and we looked at each other properly for the first time. Thijs was looking over my shoulder and when Noah heard his daddy's voice, he would look in his direction. It's the most powerful and moving thing I've ever experienced. Noah also had a powerful movement, and I got to change his nappy for the first time too!
I'm now signed out of the hospital. After cuddling him for so long it was a big wrench to leave the hospital, but it was also lovely to be home with Thijs again. We're traveling back and forwards from the Hague to visit Noah which we hope won't be for long. Leuven is now waiting to hear from Leiden about where in the Netherlands Noah will be moved to and when. So we're all waiting on Leiden now. The feeling is that he could be moved sometime early next week, let's all keep our fingers crossed.
Well this is a short post as we have a few things to do and then we're off to Leuven, but I just wanted you all to see our beautiful Noah now that we can download the images from our camera. Thank you all for Noah's cards, we received some at the hospital and there were quite a few at home. They are giving the place a very festive feeling.
That's all for now,

Louise

How Noah is doing

A report of our son's progress so far.

Before even being born the doctors drained half a liter of fluid from his belly to allow some flexibility in his body. At birth, he got a tracheostomy and then was whisked away to the neo-natal intensive care unit, where he was installed in an open incubator and hooked up to a computer which monitors all his vital signs and a mechanical ventilater. Things that are monitored are blood pressure, blood oxygen levels, body temperature, pulse and resparation.
After an hour his daddy could visit and see his son for the first time. Oma, Opa and Tante Anneke also visited, Mummy came later to visit in the afternoon once she was a bit recovered from the operation.

Since day one, the doctors have been impressed with Noah's development. His lungs matured well and he only needed additional oxygen for 3 days (each day the concentration of oxygen was reduced). His mechanical ventilation pressure has also been reduced which means that he is breathing more and more for himself.
We were waiting with baited breath for Noah's first poo. However after 2 days this didn't appear and so the specialists were send for and they found that there was a thin seal preventing him from pooing. Once this was pierced, Noah was rapidly able to evacuate for himself. They continue to monitor that this seal doesn't reform, and that Noah is comfortable. (No build up of uncomfortable gass etc.).
Noah's tummy was very swollen and extended with fluid, even after removing the initial 0.5litres of fluid. The doctors decided that the body was not able to drain the fluid on his own and so on Tuesday they started a catheter / drain from his tummy. Mainly because he had stopped improving with his breathing; the tummy was pressing on his lungs and causing him some discomfort.
800ml in total was drained, this relieved the pressure but then Noah had some problems with trapped wind. His tummy was suctioned, and some left over mucus was removed, he was given an ennema which helped relieve some constipation and released the trapped wind, and finally he is now comfortable.
He now has an elastic bandage corset around his tummy, to give him some support as his muscles are very weak and increadibly stretched. Because he had an uncomfortable night, he is only getting fluids today, no mummy's milk. But tommorrow they will start him on his milk again.
Mummy and Daddy visit often, and are able to sooth him while he's getting all his treatments. He has stories read to him, his little hand or foot is held, and a hand is laid gently on his head. Hearing familiar voices really seems to help him relax and he is almost always deeply asleep by the time Mummy and Daddy leave.
He has a personal masseuse which focuses on his body but pays particular attention to keeping his feet flexible in order to prevent his foot (which is slightly turned inwards) from fixing in that position. This will help later on in his development, but for now prevents additional problems occuring in the future.

Noah is a very strong little man, and even though he's going through all of this he's not a fussy or crying baby. He is always responsive to his parents voice, and wiggles and clasps your finger. The doctor say that he may be able to be moved to the Netherlands (into a new hospital, not home yet) in a week or so. They are waiting until the wound from his Trachaeostomy is healed so that any breathing problems that could possibly occur during transportation are prevented.
As soon as his transportation date is known, we will of course inform you all via this blog.

It's time for another visit to Noah, so I hope you are all reassured that Noah is getting the very best of attention and care and is a strong little fighter who takes everything in his stride.

Bye for now,
Mum and Dad

High in Leuven

It's now 4 days after the birth of our wonderful little man, and I still haven't stopped smiling. At first I thought it was the drugs, but I'm unhooked now for 2 days, so it can only be the euphoria! For that natural high, I can recommend giving birth instead of weed anyday! ;)

Luckily recovering from the operation hasn't been as traumatic as I expected. The staff here at Leuven are really wonderful. They help if you need it but give you as much independance as you need. I would describe recovery as more uncomfortable than painful and for that I am very greatful. I might have been a roughty toughty member of the armed forces in my previous life, but I'm still a wimp when it comes to pain! When I look at what my son is putting up with, he is a great inspiration for me to get strong as quickly as possible.
Noah is in the neo-natal unit on the floor below me. He's in an open incubator, which looks like a table top with removable plastic sides, which is under a heating element to keep his body temparature stable. It's a bit daunting to see all the drips, wires and monitors attached to his little arms and legs. The nurses spend some time to explain what everything is there for, I find it difficult to absorb all the information but it's reassuring to know he's having the best of care. The main thing I'm so proud of him because every day his condition improves and he's on less and less medical support. He's such a little fighter. He's still on a drip because they found a slight blockage in his bowels. Luckily it was nothing to worry about, but they are always behaving on the cautious side, so they are waiting a few days to ensure the opening remains open and that he can evacuate without assistance before giving him his mummy's milk. Hopefully they will start him on his milk tomorrow.

I previously only managed to spend short amounts of time with Noah, but yesterday I felt strong enough to spend a good hour with him. It was great. I told him about all the family that's eagerly awaiting him and passed on all the good wishes from everyone. I was able to read him a story from his Woezel and Pip book, and quizzed him about any future aspirations he might have. I offered up Rugby, Swimming, Cricket, Rugby, Ice skating, cycling, Rugby, Hockey, Rugby - sadly only Hockey got a response. I'm afraid my son is more Dutch than Welsh! However, this could all change when grampy Bazzard presents him with his first welsh rugby outfit - I'll keep you informed! ;)
I've inspected Noah from head to toe for family resemblance. Luckily he doesn't have his opa Drosten ears, he does does have his dad's little nose and the Widdershoven big toe. Strangely though, he has my friend Lol's elongated middle toe - I'm not sure how that got in the genetic mix! He has beautiful blond hair, and the cutest little mouth ever. This is where I have the potential to go on and on about how perfect he is in every way, so I'll spare you all and stop now.

Yesterday our friends Willie and Sandra came to visit. Noah recieved his first of his "Toys that makes Noise". Since it was Winnie the pooh, I'm not sure who will have more fun, me or Noah! It was Thijs' birthday yesterday, and so they also brought along a fantastic apple tart which we all enjoyed a taste of. Visiting regulations for Noah are quite strict, so we didn't go and visit Noah but we showed them the photo's that Anneke had taken of him. Amongst the photo's was a shot of me prior to giving birth. Willie laughed and said how much I resembled Fat Bastard (a villain charachter from the Austin Powers movies - not complimentary). The weekly squash sessions makes Willie surprisingly agile and swift. I blame my stitches for slowing me down. On reviewing the hospital security tapes later, it was discovered that Willie managed to escape the hospital confines by disguising himself in a Burqua and blending in with a crowd of Nomadic moslims heading towards the car park. I will find you Willie!!! ;)

Well, I'm gearing up for my overdue first shower this morning. After that Thijs and I are heading off to visit Noah and have a little chat and read him his story. I'll see if he's had a change of heart vis a vis his Rugby aspirations - I'm nothing if not persistant!
That's all from Leuven, love and best wishes to you all, and please keep the comments coming, they are great to read.

xxx Louise, Thijs and Noah