How am I doing?

Hi everyone,


Just a quick update from me, Noah, to tell you how I am doing.
I'll tell you a bit about my average day.

I get fed every three hours with milk, for a total of 8 meals a day. Most of my milk goes through a tube straight into my tummy, but three times a day I get my milk in a bottle. I don't finish the bottle yet, but I am getting better at it.
First thing in the morning is a good wash, and a new outfit. Around 10 in the morning the doctors come by to see how I am doing, and do their thing. I am not very fond of that, but it is not that bad. Sometimes they need a drop of blood, or a x-ray or echo scan, but mostly they just do a check of how I look. I get visits from a professor in genetics, the throat specialist, the childcare specialist, the belly specialist, a plastic surgeon, the doctor in charge of the intensive care, his assistants, and sometimes some students as well. I must have forgotten a few more or slept through their visits, but I'll try to remember for the next time. Luckily they don't come all at the same time!
After their visit I often get physiotherapy for my lungs and chest. This releases a lot of slime from my lungs, and helps me breathe easier. During the day I sometimes need slime suctioning out my tube, because it is very difficult to cough through the tube. After my physio I get an hour of breathing on my own, with the machine on stand-by. This is very exhausting, so I usually have a nap afterwards.
Later in the morning a special nurse comes by to sit me on her lap, and play with me for a little bit. She is a pediatric specialist and will help me develop, although I think she just enjoys it. She said I was completely normal, and I am happy to get an extra cuddle.
In the afternoon my Mum and/or Dad come by for a long visit. I always try to be awake for that, but with all my other activities sometimes I will fall back asleep. They will also give me a bottle of milk, when they are there during feeding time (hospital is a bit like a zoo, they even have a giraffe here, although I suspect it is a painted X-ray machine).
Anyway I get to sit on their lap, which is very nice and they read me a few stories, and talk to me in general. After their visit I always need another nap.
In the evening it is time for another hour of breathing on my own, without the machine. They try to make me exercise my lungs three times a day. Then a good solid nap, only to be woken up for more milk, and nappy changes. If I am awake at some point during the night, they will give me another bottle, and my last lung excercise, other wise I get that early in the morning.

A little bit about my surroundings, and machines. I have a normal childrens bed now, and have my own stuff around me. I have a few toys in my bed, and my own blanket to make it all look a bit more colorfull. They have taken all the needles out of me, and I now have only my breathing machine and some sensors, to measure my breathing frequency, my heartrate and the oxygen level in my blood.

So that is my busy schedule, I hope you understand that I can't always be awake if you come and visit. I am off for another nap,

Noah.

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