Catching up!

Wow! The time has just flown by - well, that's our excuse and we're sticking to it.

Wales was pretty good. We got some well needed sleep, did some shopping and .... well that was pretty much it really! Our only real touristy thing was the view from the back garden:


We missed Noah very much, but we miss him every day, the only difference in Wales was that we didn't get to visit him in the hospital. Luckily for us his Auntie Anneke called us every evening to give us all the latest updates. His oma and opa were also visiting him and so Noah had 3 people to amuse, bathe and feed him - he was a very happy little boy.

Towards the end of that week he had some diarrhea which really knocked his system out of whack. As represented here by the (it seemed always and forever) sleeping Noah.


He had been doing so well. He was breathing for himself 18 hours a day but needed to go back to 8 hours a day because his system was so tired. He also started to gain more fluid in his body cavity which is also tiring for him. This situation hadn't changed until this Saturday. Thijs and I have been quite concerned for little Noah, but it was so very weird because although he was sleeping very deeply, when he was awake he was really happy and very interactive, which you wouldn't expect from a baby that was supposedly quite ill according to his machines. Look at him here doing a good Rocky impression, including an 'Adriaaaan'

The riddle was solved on Saturday when we walked in to find one nurse busy helping Noah breath manually while another was swapping his usual computer and breathing apparatus for a new set. All of his tubes were cleaned and replaced and 'lo and behold' everything started looking better for Noah. His continued lack of progress was diagnosed as hardware malfunction - there was a leak in the machine which caused a malfunction in the recording done by the computer! HUGE relief.

Noah is now able to breath for himself for 9 hours a day. He has a slight cold and so suffers with a lot of mucus blockages so the nurses are keeping his breathing practice low until he gets over the cold. However he is growing to be a little fat man! He is now a very wonderful 6225grams and the latest measurement taken at the beginning of the month was 58cm in length. He's now up to 100ml of milk seven times a day instead of 85ml. Way to go Noah!
As you can see here, not only fat, also greedy. No need for mum or dad to hold the bottle anymore!



Thijs is now working in Ede on a new project which he finds pretty cool as it's a new environment and the position offers some new challenges, which is always good. It's quite a commute though, but he starts very early and this allows him to leave early to get to Rotterdam for an afternoon visit with Noah. It's very tiring for him.
I get to bath Noah everyday now because I'm in so early. See here in the bath, drying off and all dressed!



I'm a little stress bunny at the moment. The relentless pressure is getting to me. I find myself able to function day to day, but it's hard. Sometimes it's all a bit too much and then a good cry or a mad rant to one of my friends is needed. That usually helps a bit. So many things are difficult but I thing that's the most frustrating is the lack of privacy with Noah and the lack of power to be able to change anything about the situation. My mind knows that time will heal everything, but for now it's just a case of gritting teeth and getting on with things. Thank God for Thijs and thank God we have each other and such good family and friends that we can turn too.
We're both trying to stick to a schedule in order to bring some order to what feels like a chaotic situation. I've got an appointment scheduled with the family doctor and the work doctor in order to see what can be done to help us in this situation. We're both realising that in order to be there for Noah we also have to take care of ourselves a little bit too.

I'm going to go into work on Wednesday and finally take in the traditional "bischuit met musijes" to celebrate the birth of Noah with my colleagues and I'm really looking forward to that. Apart from developing schedules and visiting Noah we've also been busy taking more photo's and even taking a few videos. So we promise to post them soon.

Speak to you soon!

The Drostens.

Silence is Golden.

Translation:
Fokke & Sukke Don't talk to anyone anymore.
People who don't read our blog, we so don't talk to them
And people who do read our blog, well they know everything already!

Translation:
Fokke & Sukke Join every internet trend

"Quit web blogging" ... that's the latest thing!
Ha! You don't have to tell us that twice!

A few photo's to tide you all over while we're gone!

Since Noah has grown he can wear a lot more of his clothes. He's turning into a regular fashion model. All the nurses comment on how handsome he is, and how fat! When he's on our laps, we sit him up for a little while because loves looking around the room.

He is trying to take up Thijs' former bad habit of sucking his thumb, but mostly he ends up putting his fingers in his eyes or whacking his head!


His other trick is sticking his tongue out.



We just love being able to bathe him ourselves now, and Noah just loves kicking his feet about in the bath.


His favourite toys get hit and grabbed, mostly this is by accident but we see that he's getting more and more coordinated.




Our Handsome Boy!

It's been a while!

It's been a busy time in the Drosten family. Thijs has been working very hard due to his project coming to an end. Lots of items getting last minute changes that needing completing before the end of September. On Monday Thijs took in lots of Irish Tea cake, which I'm told his colleagues enjoyed, and said goodbye to the Goudse. For now he has some free time but there is a new contract looming on the horizon so he'll be kept busy till the end of the year!
Noah is doing great. He's grown to a whopping 5400 grm and now fits into size 62cm clothes (which is a little bit to do with his belly, but he's also grown in length).
I've been kept busy by visiting Noah every day. The journey back and forth to Rotterdam is quite easy, it just takes up a lot of time, and of course there are the days when you just seem to miss every connection by inches! I love spending time with Noah, but it was all quite stressful for a while. It all boiled down to communication.

Noah was having a lot of investigative work done on his belly. Every day someone would turn up and look at him and give some scary diagnosis then later on I'd be told that it wasn't anything serious. While all this was going on Noah also started suffering from painful stomach cramps and was in considerable pain. I didn't know what was going on with his health or how to help him when he was in pain. The nurses are very efficient but it left Thijs and I feeling left out and unable to care for our child. We decided to have a talk with our doctor and nurse to see how we could change all this.

The most important thing to us is Noah's care and his condition, which is always fantastic, but we wanted to see if we could do more ourselves with the care of our son. We are so happy we did this. We've now spent the last week putting him in and out of his bed, putting him in his bath and learning how the nurses take care of his canule. We're able to put him on our laps, and it all feels just fantastic to do this ourselves and not have to wait for others to do it for us. We're scheduled to learn how to take care of his food intubator (sonde) and to give him his medicines. So finally we're more involved in his day to day schedule and Noah seems to love it too.

We had some wonderful news from our friends Paul and Wendy, their son Frank couldn't wait any longer and decided to join their family 6 weeks early. So a big Hi to Frank, and we all hope he'll be home soon.

Thijs, Lilo and I are off to Wales today to visit my dad, see some mountains and do some shopping. Hopefully there will be time for sleep as well, but I'm almost resigned to seeing grey under Thijs' and my eyes until Noah is 21!!

Bye for now and we'll blog when we're back from Wales.

xxxx The Drosten juniors

Picture post

As promised - Some pictures to offset my complaining about bureaucracy.

Noah looking more and more awake nowadays.

And he can sit up a lot straighter (with a bit of help offcourse)

The camera is nice and shiny and gets some attention as well.

Noah got a little - traditional oriental medicine - belly cushion send from Singapore.We hope it helpes because he has lots of trouble with wind.

A picture from his (bigger) bed as promised in my previous post.

Daddy feeding Noah a bottle. He is totally concentrated.

So two new posts in two days, we might post again in the weekend.

Thijs

How to register an alien - A story in 12 steps

Just a story of how frustrating it can be to work your way through bureaucracy when things happen in a different way.

As you are all aware Noah was born in Belgium, and I had to register his birth there. This would be the same in the Netherlands, births get registered in the birthplace.

So far so good. Now because of all the stress and time we were with Noah, registering him in the Netherlands took a while (not that it would have mattered anyway). So let me guide you through the steps.

12 easy steps to get completely tangled in the bureaucratic jungle:

1. Get your son's registered in a foreign city


2. Do not register him there as a resident (he is not, so this seems logical)


3. You now have a child that is already 'lost' , as he doesn't live anywhere


4. Try to get him registered as a resident in your home town. They will demand proof that he is alive, to be issued by the town he is registered in (uhmmm.... he isn't anywhere)


5. Now try to get him registered as a dutch citizen. Get put on hold. Get transferred to immigration services. They will only register when your kid shows up in person (impossible for the next 4 months at least).


6. Get helpful people on the phone!


7. They offer to visit, but.... only in The Hague. Maybe register him in Rotterdam? Impossible because he doesn't have an address there, and the hospital is not allowed as an address either.


8. Hope they phone you back as promised and have not lost your original paperwork in the meantime.


9. Meanwhile get called by the insurance saying they need his official registration number to be able to complete his files. I got the feeling they won't like waiting for another 4 months, and we definitely won't enjoy paying Noah's intensive care bills ourselves. Oh well, wait and see for now. I'll continue my story later, after they phoned me back......


10. They phoned back! Incredible! Noah will be registered with the immigration office next week, although I need to get a statement from the hospital confirming he is unable to travel, and is our son. The secretary who confirmed the appointment after I spoke to the immigration officer was completely pythonesque in her approach though.... I agreed to an appointment on Tuesday, the 16th at 14.30. So she told me she had to reschedule to Tuesday, 11th 14.45. I said okay, as long as it is Tuesday 16th 14,45 and not on Thursday the 11th that's okay with me. Fine sir, Tuesday. Ah, we do have an opening at 14.30 on Tuesday, so Tuesday the 11th at 14.30 it is. You mean the 16th? Yes sir, Thursday the 16th at 14.30. Sounds of my head hitting the desk reverberated through the office..... Anyway, I hope my appointment is set now.


11. The hospital: I forgot to ask our regular doctor to write a letter for the immigration office, so I asked the nurse on duty Friday to get the doctor in attendance to write one when he (or she) had time. No problem and a nice gleaming letter was waiting for us on Sunday. Unfortunately not complete (no mentioning of his inability to come to the office), so I asked the nurse (another one) to have he then attending doctor (also another one) to rewrite it. Luckily Louise managed to get the letter on Monday afternoon... The then attending doctor actually wrote it on the spot, telling her that she should ask earlier. He quickly took back that comment when he heard we first mentioned it on Thursday evening. Never mind, it is settled.


12. Getting te original documents back. Off course they didn't phone me as promised, or even can be reached by phone. Well, lets drop by and see. Luckily Leuven gave us two birth certificates, so that is at least something. Hopefully I can get my international birth certificate back though... Will be going to their office before going to the immigration services to see if I can get to see some one when I show up in person.

Well, I'm afraid you'll getting a sequel, I think somewhere after Tuesday the 11th/16th ;-). I may have gone slightly insane......

Thijs

A quick update: The people I met today were very helpful. Noah's birth certificate was returned in good order, and the lady even tried to register me, she used to work and has some friends in the immigration office. Unfortunately her contacts were not available. The guy at the immigration office processed everything without any problems, now we just have to wait for the bureaucracy to do it's work..... about 4 to 6 weeks.

To make up for all this whining I'll try to post some pictures tonight!

Almost two months old - a look to the future.

Hello,


Noah is just over two months old now, so time for a big update.
I'll start with what is going on now.

He now weighs a massive 4550 gm (10 pounds), and has outgrown his first clothes at 57 cm. We have plenty more clothes, so the only problem is picking something and actually finding something in the baby room. We hope the furniture gets delivered soon, so we have some storage space for all his stuff.


He is growing very well, which is good. The doctor actually asked the nurse to weigh him again because he is growing so quickly, he couldn't believe it. He is also starting to get a little bit more active (sleeping only 20 -22 hours a day) and now easily recognizes his mummy and papa. He is now able to smile somewhat, and get he is getting more coordinated. He now has 7 bottle's a day (every three hours, skipping the 3 in the morning bottle), of around 95 ml. each. Louise is still expressing milk to give him the best food possible.
Because he has grown a lot, they have given him a bigger bed, but that could also be because of the mountain of toys and stuffed animals in the bed.....

-- insert picture of overview of bed --

Louise got her first real smile Thursday, her heart melted and she is still not recovered. She's thinking of quitting her job and just focusing on making him smile again. Not very practical I know, but she claims it would be worth it :). Noah has discovered his hands and is getting more coordinated in using them. Friday Louise watched him accidentally make something move when he waved his hands about, he did it a few times and then you could see him realise that it was his hand doing it. That also got a smile!

Aside from visiting Noah, we have been very busy. Last week I went to Nieke and Joost's wedding while Louise stayed at home to look after Noak and Lilo. Last Saturday was Bas's stag party, and Anneke kept her company. They went to visit Noah together, and Anneke got to give Noah a bottle as well.

Friday I went to the gemeente and tried to register Noah. He is most likely an illegal immigrant (alien?) right now, but hopefully this will be sorted soon. It was obviously to much to deal with on a late friday afternoon, so they promised to call me today.

This weekend Marloes and Bas's wedding. We had a great time, as did everyone. The bride and groom looked wonderful, so we didn't do any lasting damage to Bas during his stag night.

Off course there is the usual work, house, shopping etc to keep us busy as well, but I won't bore you with those. We do have to entertain Lilo everyday, so I just post these two pictures of her.

That says it all!

A quick look to the future:

For us: We will take some time this weekend to organize Noah's stuff and catch up on house work after two very busy weekends. We'll be off to Germany (Trier most likely) for a weekend away, in the beginning of October. Anneke and my parents have kindly offered to look after Noah and Lilo, so that should be a nice break for us.

Louise will have to go back to work at the end of October, she will most likely start working 3 days a week, spread out over 4 days (4 days of 6 hours). She is getting fit quite quickly, so that should not be a big problem.

For Noah: The doctor is keeping us up to date once a week, and he told us last week that they think they can operate to remove the blockage in his throat when he weighs about 7 kg and can breath for himself. They expect him to grow at around 120 -150 grams week, so in about four months he should be big enough. Because his condition is so rare, they cannot predict when his lungs will be strong enough to do the operation, but we hope that will be around the same or even before that time. They are quite confident that they can save his vocal cords, so he will start to produce some sounds in time to learn to talk (we may regret this...). This also means that he will come home without his canule which will save us a lot of worry and stress looking after it (the canule).

It may take a few weeks for him to recover from the surgery and learn how to breathe through his mouth and nose again, but that is a step he will have to take anyway.

So: looking to the future, Noah will come home earliest around Christmas (this year, unlike the house which will also be finished before Christmas!!), and that is offcourse what we are hoping for.

Trying to keep you updated more often is also on our list :-)

Thijs