Busy doing nothing.

Pictures have arrived!

Some moments in a typical day of Noah: The night time routine

Getting sprayed, to make all the stuff in his lungs nice and loose, so no thick lumps that block his breathing tube in the night.

Change into his pyamas...

A story before bedtime

Sitting on grampy's lap

Fighting sleep

And finally asleep!

Original post....

Time does keep passing so quickly. Another week is over and we still haven't posted any pictures!! It has been an exciting week. Noah has grown another tooth, this time at the top. The other top front tooth is close but it's taking it's time coming through. We're hoping it will be through in time for Easter and then Noah will be our little Easter bunny with his two top teeth!

Zaineb has started this week. She has quickly become my right hand. It's been great to work with someone, it's a lot less stressful with two. Noah has been ill this week and has not been off his machine as much. My goodness it's hard work when he's on his machine, how quickly we'd forgotten this! He is so much less mobile, you have to do all his care bent in awkward positions, of course this is no fun for Noah either being stuck in one place.

We had to take Noah to the hospital yesterday to get him checked out as his condition wasn't improving. He has a cold but luckily his normal dosage of antibiotics is helping to keep it from getting worse. Noah is his usual sunny self with periods of grumpiness in between. We experience his cold as a lot of suctioning (also during the night) and we spray him more often to help get the slime loose. Hopefully he will be well again soon.

I finally got out of the house and went into town to meet a friend and do some shopping. Thijs has now decided it's a good thing I don't go out that much as when I do, I spend too much. I have tried to explain that buying a new computer when it's on sale is a saving - but he just won't understand this. He is so stubborn sometimes!! ;)

We've made some social plans for the end of this month and so we're looking forward to going out as a couple. We're starting to think about how we can arrange for more time together. I know this might sound a bit strange to some, but you see we work like a tag team here. If Thijs looks after Noah I can go out and do something, and vice versa, it's actually impossible to do things together while Noah has been so out of sorts. So that's why we're now thinking of perhaps getting a nurse in once in a while in order to be able to go out together and walk the dog up the beach or just go shopping together (although I think Thijs would prefer we stay away from the shops!!). Now that things are settling into a routine we have the space to think about things like this.

On the administration front we have had some contact from the various offices, and they are now considering our case. So it's at least some progress.

Things are settling down so well here I've even taken time to look out the window. It's beautiful Spring sunshine out there. I'm feeling optimistic enough to even think about having time to plant some bulbs in the window boxes. Yes, yes but first we'll post some photos!

Tooth number 4 arrives.

Finally! At last the 4th tooth has made an appearance. It's been another long week of interrupted nights, unending poo pampers and suctioning until we ran out of suction tubes; Thank you Emnamet for making an emergency delivery! On Saturday evening we finally had our first normal (as in non-diarrhea poo) pamper. So of course we need to make a blog entry to note this special occasion. :) It was a short reprieve though, we're back to sticky poo pampers today. Ah well, it was good while it lasted! Noah is looking like a baby crocodile now, it's so cute!

Yes, my life is reduced to the quality of Noah's pampers. I am going stir crazy. I have only managed to get out of the house about 5 times since Noah has been home, and most of those were for medical appointments. The main reason is that Noah is not used to outside yet, and we had one incident where Noah went 'absent' and several near misses when we've taken him out together, because the sun and the wind on his face frighten him so much. So I don't feel comfortable being the only 'trained' person taking him out. Because of Noah teething, it's difficult to get him out of the house on the weekends because sometimes he's just not happy, plus the fact that the weekend is the only time we have to do all the jobs that require the two of us present.

I don't really want to complain, I hate being negative but I also want to be honest on the blog otherwise what's the point?! Friday was the straw that broke this donkey's back. As I mentioned in previous entries, Thijs has been busy trying to sort out our CIZ / PGB administration. It's been a complete nightmare and it is so frustrating that this was only started 3 weeks before Noah was released from the hospital, instead of in enough time so that we could come home with the adequate amount of support in place to help us. We also feel that as Noah's indication report was compiled without our involvement, it's been a lot harder to try and add information. In conclusion a decision of a lower level of support was issued by the CIZ than was indicated as required by the doctors.
We have been trying to appeal against this decision and to get it adjusted. Thijs has been sent back and forth like a tennis ball between departments and finally was told by the CIZ to write a letter of appeal, including a letter from a doctor and a copy of his medical file. So far this has all taken 8 weeks to get to this point.
On Friday we received the reply to our appeal from the CIZ stating that their decision issued to us on the 11th of March was only an 'advice' and therefore we cannot appeal against it. I tried to handle this letter in place of Thijs, as it's a critical and busy time for him at work and so he's been doing overtime.
The result of the phone call was the following:
The fact that their 'advice' is used by another department as the basis to calculate the money we receive is nothing to do with them and we have to take it up with the other department. (We were previously told by the other department that they cannot help us because they only calculate the amount and do not issue the decision and so we have to take it up with the CIZ). I was so upset that something so crucial to us is being treated in such a stupid and beurocratic, unhelpful way that my spoken Dutch was not very good, I was advised to discuss the letter with my husband as he could explain it to me, as I obviously didn't understand. I thanked her for her time and said that I understood perfectly, I just do not agree with their findings.
I feel like throwing up because my insides are so knotted up with frustration. In order to hire help we will have to use our savings until this catch 22 situation is resolved and I'm not that hopefull that it will be resolved anytime soon. We are both so tired, this took the wind out of our sails and we feel close to giving up. We of course can't give up, because that means putting Noah back in hospital and we won't do that until we have absolutly no recourse. This is where the CIZ wins - and we feel like crying.
Well now that I've shared that moment of self pity - we have come up with a stratergy of fighting this. We're not sure if it will work but we can only try. I've asked for some legal advise to see if conducting business this way is lawful. Thijs will contact the CIZ again on Monday to seek someone with an ounce of knowledge and see why this ruling has been given. If this comes to no good, we will contact an Ombudsman to see if we can get some assistance and also the health insurance to see if they can have any influence. After all, they will have to foot the bill if Noah is returned to hospital. So for this brief moment, we are down but not out.

Luckily, in amongs all these "going on's" there is Noah. He is such a little ray of sunshine, you cannot believe how much he can melt your heart with one of his smiles. I love watching him explore his world. Inge suggested introducing a box filled with beans or macaroni, this helps Noah because he doesn't have the frustration of trying to pick up something or hold on to anything, he can enjoy running his hands and feeling the different sensations. It works a treat! He loves swooshing his hands through the beans and of course flicking them on the floor. His face is pure joy and he laughs when the beans fly out of the box, the little rascal! We're seeing that Noah is a lot more aware of his surroundings and enjoys making noise with his toys and picking up things that are close by. He had me laughing this morning because he was pulling on his feeding tube like it was a bell rope, almost as if he were demanding his breakfast!

So not to worry, it's not all doom and gloom at the Drosten household, it's just a little hiccup. As usual, the photo's will be posted a bit later.

Noah is home for 1 month already!

Wow! One month has already passed. On one hand I really can't believe it and on the other hand I'm thinking "is that all??!!!"

We've just been for our official measurements of Noah at the Soffia and so I can pass on to you that Noah is 8780gram and 72cm long and his skull was 47cm. So all good and healthy.

Noah has 3 teeth through right now, and is busy with cutting his two top front teeth and numbers 4 and 5 at the bottom. I hope they come through soon. I'm pretty fed up of pooh nappies by now, and really wish this diarrhea was over with. Noah has terrible cramps and it's quite heartbreaking when he's crying and covered in sweat from the pain. I'm told this is normal for teething but it's still bloody awful. On top of all this he gets excessive slijm in his lungs so extra suctioning is required. I feel like the suction machine is my siamese twin at the moment! I dearly hope after these few teeth are through that we will get a break for a while. Apparently children cut teeth for the fist 2 years, I think Noah is trying to get it over with in his first 2 months home!!!

We found somebody to come and help me with Noah during the morning, her name is Zaineb. She's a really nice lady and Noah has taken to her too. We had one trial morning and now I can't wait for her to start. We got so much done together and it was so much easier focusing on Noah. We're hoping she can start at the 1st of April, but it's taking so long to get this PGB administration sorted heaven knows when it will be. It's so frustrating that the fund that is set up to help you is so damn complicated, even the people that make decisions on your budget don't know their own rules. Luckily Thijs reads the small print and has the patience to teach their staff their own rules!

We're both pretty tired. I'm loving looking after Noah but my goodness it's full on hard work. We've had quite a few appointments with the Revalidation team, fortunately in Den Haag, so no long trips with Noah to Rotterdam. The Revalidation doctor is fantastic. She has great ideas and works with us to find solutions for our situation, plus she's easy to talk to and has knowledge of local facilities. She's already put us in touch with a great Physiotherapist, Inneke and an Ergonomist, Inge. We've finally got a second corset made for Noah by Livit and they are busy making a 'schelp' seat. It's a sturdy seat that Noah can sit in and be fully supported so that he is stable and his hands are free for playing or eating. This should help his development go to the next level. We have a final fitting in 2 weeks.

Noah's development is coming on in leaps and bounds. He's turning from side to side, grabbing objects and swapping them from hand to hand. He's almost mastered rolling on to his tummy but he hasn't quite figured how to get his arm out of the way. All of this is quite tireing for him and he needs loads of suctioning when he is active, which interrupts his concentration. However Inneke is helping a lot with this and coming up with some good ideas how to build up Noah's stamina and to give him support where he needs it. Inge is helping by giving advice on practical devices available to help me and Noah in our daily routine, such as bathing, changing, play areas etc. So slowly but surely it's falling into place.

We've had a few visitors to see Noah since he's been home. His Fairy Godmother, Lol, was here for a week having flown from Las Vegas. As you know Fairy Godmothers can choose to be invisible. This is why we have no photos of the visit, and not because we are completely absentminded and forgot to take any!!
My dad is here until the end of the month. He's enjoying taking the dog to the beach and doing really well on his fitness plans. He's lost 5 kilos since he got here, so he's very happy. We've been keeping him busy by getting him to paint Noah's bedroom furniture and it looks lovely. Maarten from Arnhem was here and Noah's Oma and Opa have been a few times and this weekend we were spoiled when Maarten and Judith came and cooked Dinner for us. Yummy! Thanks again guys :) .

So it feels like we haven't done anything and yet lots has been going on. I suppose it's just a normal 'life with a child' feeling. Hurah! We're finally a normal family with our baby at home and we are completely shattered and it's normal! :)

Here are a few of the photos we did remember to take! Enjoy.

Noah, Papa and Grampy enjoy some sport on TV




Oh no! Not the dreaded 'kid bathing in the sink' photo!


I'm soooo not impressed!

This is how you wrestle a bear into submission!


Noah in his 'Dennis the Menace' romper trying to look innocent - and failing?!

Noah eating his pear and apple puree. Yummy!


Frank, totally unimpressed with Wales vs France performance at the Rugby. Come on Wales!

Noah at home

Hi everyone,

Here some pictures from home, as Noah has been home for two and a half weeks now, and we are getting a little bit used to it. First of all some pictures from the house, which Anneke and my parents decorated! Hooray for decoration. Streamers, balloons and flowers everywhere when we came home.


Also the traditional stork, which delivers the babies.



As we said in the previous post, my parents came by to give us a hand, and entertain Noah. He really enjoyed it, and we also went for a short walk around in the neighborhood. My dad is very good at making Noah laugh.....


Here we are getting a bit more organized, as far as possible anyway.... Noah is enjoying playing with a wrapper for a suction tube. We have an enormous supply of these things, so it is easy to keep him entertained!


We try to go out for a walk everyday, and Lilo, our dog joins us on most of these walks. She got used to Noah very quickly, so no problems there.


Last one more picture of the boss, ordering us around!


More news later, I hope Louise will be able to write a bit. Quick facts: Noah seems to be growing a lot, he also seems hungry. We weighed him, on our big weighing scales, and he is around 9 kg (19 - 20 pounds) , 74 cm long (29 inches) and has three teeth. He is breathing quite a lot for himself, but his oxygen need seems a bit higher then in the hospital.
He is eating a bit more, although the apple-pear mix is an absolute favorite, the rest he is still a bit hesitant eating.

Well that is all for now, back to work!

Thijs

The 1st week

All I can say about the first week is thank goodness for grandparents! :)

We arrived home later than expected on Monday afternoon. Noah hated the car journey and was quite grumpy by the time we arrived home. He had been breathing without his machine for most of the day so we thought we would put him on his machine for a rest once we had set everything up. We eventually worked out that our nurse had changed all the hoses on all the machines while we were busy packing at the Ronald McDonald, so that we had nice clean ones. A nice thought but we found out that we had leakages and it took us a while to work out where. We weren't very stressed at all!
Noah's night machine decided to work as a steam machine, which loosened Noah's phlegm (slijm) very nicely. So we had 0.005 seconds to suction him when he woke up before he sounded like he was drowning. We maintained our composure throughout!
The front room, the hallway, our bedroom, Noah's bedroom and the bathroom looked like an explosion in a medical supply warehouse. We had great ideas of getting organised but then came 'The Pampers Problem'.

Noah loves being home but the change gave him diarrhea - who knew there was such a difference between Rotterdam water and Den Haag water?! So we would no sooner get him washed, changed and dressed when a large trumpeting sound would signal our need to start again. Undress, wipe, change pampers, "PaaAAAAARRRRPPPP", wipe, change pampers, dress. "PaaAAAAARRRRPPPP", undress, wipe, change pampers, "PaaAAAAARRRRPPPP", wipe, change pampers ... and so on and repeat! It was time to phone for the cavelry!

Chris and Lex came to the rescue and we were so relieved to see them. They went to the Ikea to buy some storage for us. Lex helped Thijs to put it all together and then Thijs even managed to do a massive shop, so not only did we have some food in the house at last but we also had replenished stock of Pampers! Chris looked after Noah while I managed to cook some meals for the freezer. Finally some order is restored.

Since then it's been a lot better. We're still busy with the Pampers and we found that 2.5 hours isn't long enough to get us and Noah ready to leave the house and get to the doctors on time! But still it's all good . He's home and we love it!

Noah spends most of his day playing, sleeping and pooping just like a regular guy. Apart from the diarrhea he's still happy and doing well off his breathing machines. You can tell that it's all a bit tireing for him, but he's very relaxed and loving being home. He even ate a full bowl of food, which was unheard of in the hospital. We sit him in the corner of the couch when we have our breakfast and lunch so he has seen us eating. This obviously payed off.

Lilo hasn't really paid much attention to Noah. She's had a good sniff of him and licked his hand. She sleeps beneath the couch where Noah is sitting so it seems to be going well.

As you can imagine we haven't taken very many photos - hands are busy with pamper changing, but we will try and take some in the next few days and post you some home photos.

Thanks for all the fabulous cards, and a big shout out to the Drostens for the fabulous home decorations. Fantastic, it really made it a welcome home. Thanks also to Hans, Marloes, and the ICK1 team at Sophia for helping us out through this Pampers Problem, it was great to have you on the end of the phone to answer all our questions.

xxx The Drosten juniors.

We're going HOME!!

So it's 05:30 in the morning, Noah is being suctioned for the 10th time this night and ... WE DON'T CARE - Only the weak need sleep! :)



We're all excited, it feels like Christmas morning only better. Our gift has been long awaited. We are so looking forward to starting our life together at last as a family at home. Thijs is off to the car to pick up all the crates we need to load Noah's equipment safely into the car.


Later we have to pack and clean our room at the Ricky McD', (we were told at 17:00 that we needed to stay another night in the hospital so we're not as prepared as we'd hoped- oh the best laid plans of mice and men!!).

So it's wash time for Noah, we'll all enjoy a lovely relaxed bath later at home. :)



After that it's a last physiotherapy session for Noah a final wave to the nurses and we hope to be out of here around 10:30, but as long as we leave - the time doesn't matter!

Right, it's time to get busy and stop blogging - at least for now!

xxx The Homecoming Kings and Queen (I've watched too much American TV!!)

Our at home visit and THE last night at the Sophia :)

On Tuesday night I was both excited and nervous. I think I slept a total of 3 hours, not that great a start to the day, but my brain just wouldn't switch off. Thijs and I were at the hospital around 7 o'clock in the morning. We had Noah dressed and ready to go by 08:30, which is when we had an appointment with the plastic surgery department. 2 hours later we still hadn't seen the doctor and were close to leaving. Noah was very hungry and a bit overwhelmed with all the people in the waiting room. Of course that's when the doctors had time to see us. I won't say that it was worth the wait, but the team of doctors were very thorough and gave us a lot of information. After 45 minutes we were finally on our way to Den Haag!

Noah wasn't that impressed with being in a car, but with his sheet over his head he managed to fall into a light sleep and we made it home in good time. We were a bit worried that Noah could be overwhelmed by all the new sights, sounds and smells, but in true Noah style he took a good look around, yawned and fell asleep!

We were glad he fell asleep because although we had been home a few times to set things up, there was still a lot more things that we found needed to be moved. This is really the purpose of such a day at home. We found out a lot of things, but the most important one is not to sit on Noah's oxygen hose!!

Here is me on the phone to Grampy Bazzard, while Noah is asking "Who?!". He was too young to remember my dad's terified face in the hospital, (my dad has a bit of a phobia against hospitals), but luckily he has the whole of March to get to know the head of the Welsh Mafia!

Papa got a few smiles from Noah as he was playing in his box.

He was so relaxed he smilled all the time - except for when we tried to take a photo of course!

Finally we put him in the bath which he thought was wonderful. He relaxed against his papa, kicked his feet and weed in the bath - traditional!
It really was a wonderful day. I thought I would be heartbroken to take Noah back to the hospital but strangely it gave me a bit of a lift. We both must have been a little worried, but this day proved that we can handle it and most importantly Noah loves being home.

So here we are, only 1 more night to go. This is Noah's last afternoon nap in the hospital.

Here is the last night waiting to be ticked off his tastefully decorated countdown calender!

Only one thing to do and that is to sleep this night away!

Good night and God bless everyone. Tomorrow is the start of a new future for the Drosten junior family and we can't wait. :)

xx The Drosten Juniors.