Wednesday, July 30, 2008

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

Saturday, July 26, 2008

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

Friday, July 25, 2008

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

Thursday, July 17, 2008

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. ;)

Wednesday, July 16, 2008

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

Tuesday, July 15, 2008

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

Saturday, July 12, 2008

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

Friday, July 11, 2008

Some photo's!

Hi everyone,

Below are a few pictures that Anneke took of Noah. As you can see he is closely monitored.
He and Louise are doing very well. Noah’s ventilation is slowly being reduced, which is a very good sign.
Louise is already able to get out of bed for a few minutes, which is also a very good this quickly after major surgery. She doesn’t want to get out of bed, as she is enjoying the princess treatment she is getting right now. She doesn’t even have to get out of bed for a bath.
We expect Louise to be here till Wednesday, but I will be going to The Hague tomorrow or Sunday to check if the house is still there. Back to Leuven quickly off course to be with Noah.

For visitors: Noah can be visited only with the parents, between 15.30 and 16.30, or between 19.00 and 20.00. Visits have to be short and you are not allowed to touch anything (including Noah). Only two visitors are allowed at a time.
So please call us if you wish to visit, and we can make sure all is arranged.

Thank you for all your calls, visits, mail and comments.


Wednesday, July 9, 2008

News, and move

Hi everyone,

Noah is doing well and so is Louise. I'll tell you more tomorrow, but we will celebrate first now.
Thanks for all your calls, messages, phonecalls, prayers. It has really helped us, and since Noah is doing well, it has helped him as well.

Louise is recovering in a new room, and has a new phone number. Please keep your phone calls short, as she still needs to sleep a lot, but it will be difficult to stop Louise from talking all about Noah. Phoning hours end at 8 in the evening, so Louise can go to sleep early.

Her new adress is:

Department E430
Floor 3, room 3002/1
00 32 16 333948

Thijs

B-Day

Hi everyone,

9:15
We just arrived in the hospital from our hotel, Louise is already in surgery.
She got taken to the preparation room at 6.30 this morning, and the planned procedures will take quite a while. They will first drain some fluid from both Louises belly, and later on our sons belly before even starting the operation. This will be done very gently, so could take a lot of time.
This means sitting and waiting, but the nurses have given us coffee and we have a little room to sit, so we don't bother too many people pacing back and forth. Also, they know where we are and will tell us any news as soon as possible.

11:00
Still no news, so I'm slowly going mad. Oh well, it could be that I am just impatient.

11.02
News! We are now officially parents of Noah Alexander Glyndwr Drosten.
Mother and son are both doing well, allthough I haven't seen them yet. I will be able to visit around 12, but this is probably it for today.

Thijs

Monday, July 7, 2008

It's the final countdown....

(cue 80's hairrock)

Louise just told me that they have given her an injection to help mature the babies lungs. Just before that pr. Deprest came to see her and told her that they have a preference to operate on wednesday (7th of July), but not everything is arranged yet.
The doctors are meeting this afternoon to decide when the operation is going to take place, but from the looks of it, wednesday is the best bet.
I'll update this post when i hear more.

Confirmed! Louise will go into surgery wednesday morning, around 7.30 to be prepared, and I expect to see our son arrive before lunch. (Louise will probably still be out, so I get to be the first to greet him.)
Don't call us we'll call you! Mobile phones are forbidden in the baby department anyway, as well as near the operating theather. So do not worry when you don't hear anything for a while, we'll be way too busy admiring our son :-).

Thijs

Wednesday, July 2, 2008

Update from Stalag Leuven!

Writing smuggled out from cell 3006, wing E403, women’s unit.

My incarceration began on Sunday evening when the administrator attached an identity tag to my wrist; I am reduced to a number. I share my cell with a quiet Ghanaian lady with a very loud whirling dervish of a son, called Dennis, who comes to visit. This always livens up the place. I’m situated next to the window, and so have a pleasant view of a 1970’s concrete building with a strip of grass in front of it, occasionally rabbits like to visit to eat the new shoots. The exercise yard is in front of the complex, a three tiered pond filled with goldfish, other sorts of fish and ducks. Inmates from all over the complex congregate there, the saddest of which are the pitiful addicts puffing away on their cigarettes whilst strapped to all sorts of strange and perhaps torturous contraptions.

My cell guards are very pleasant and the food is also good and plentiful – I suspect this is all to keep the inmates compliant for when they run their experiments. Like vampires they descend regularly for blood, and I’m attached daily to monitor machines that record the baby’s heartbeat. However, the baby is on to their Orwellian ways and refuses to lie still long enough for “big brother” to track him!

What?! You don’t believe me? Come see for yourself!!


In all honesty, Leuven is not all that bad and I’m in the best of hands for looking after me and the baby. We’re getting the best of care and even the slightest change in either of our condition is investigated – and found to be normal. The baby is driving the staff nuts by not staying still for the monitor, so it’s likely that we’ll be heading off for another ultrasound (echo). This baby is destined for a career on TV with the amount of time he has spent on the small screen already!

The professor has been to visit and is happy with both my and the baby’s condition. I’m not sure if it’s a threat or a good thing but he mentioned that perhaps we can delay the procedure until 37 weeks! J He did mention that it’s difficult to measure how the baby is progressing, they don’t have anything to compare it too, but he’s moving about so much and so strongly that they believe this to be a healthy indication. Of course if anything changes, my waters break or our condition deteriorates then they will reconsider. The main reason for me to be here is as they can respond quickly to the slightest change, and we both find that very reassuring.

Thijs is here to visit and if that wasn’t fabulous enough, he came bearing packages! I have a beautiful flower arrangement as a gift from him to brighten and perfume the room, which is wonderful as the room is very dull.

My dad had posted even more clothes for the baby – I think my dad is determined that this will be the most fashionable of grandchildren!

The biggest box was from our friend Lol, who’s living out in America at the moment. When we opened it, it was fantastic. We felt like we were having one of those parties that they throw for parents to be in the USA, a baby shower. Package after package of the most gorgeous Winnie the Pooh baby room items were opened and admired. Even the staff commented on the lovely and sometimes unique items. A huge thank you from us Lol, we’re overwhelmed. Plus the timing was fantastic and cheered us up no end!

Thijs loves the canteen; he can enjoy a Duvel or a Blonde with his meal plus they are cheaper than in the Netherlands. I love that they have Stella Artois non-alcoholic beer, so at least I don’t feel too left out!

It’s great that people have phoned, keeping me in touch with the outside world! I’ve also have a few visitors coming to see me which I’m looking forward too and Bart is fixing me up with some viewing material. Daytime TV is awful whether in Belgium or the Netherlands!

Well that’s all the news from Stalag Leuven, I just hope Thijs can smuggle this out undetected. I shall leave his hiding place a secret as some things are best left unsaid!

Love to you all,

Louise – Prisoner 62075924