Another blue baby episode......

Hi everyone,

As you may have read Noah is getting his first teeth. This unfortunately also means that he has an increased slime production in his lungs. So we now need to suction him more often then before, and react a bit quicker because his breathing tube gets blocked quicker.
We told the nurses this, but the nurse looking after Noah was busy with another patient. Her colleague was not quick enough, so Noah had another 'incident'.

These things make us wonder why we can't take him home. The last three incidents happened when we weren't there, so we may as well take over his care completely as he is safer with us then with the nurses. 17 days has never seemed this long.
Related, the deliveries of stuff are starting to arrive, or getting arranged. Another nightmare, as some companies are completely inflexible regarding their deliveries. I can call what time the oxygen gets delivered at 8.30 in the morning of the day that it gets delivered. The fact that I am already in work a 100 km away, and Louise is in the hospital taking care of Noah seems to be completely lost on these people.

Right I'll stop complaining now, and enter you with pictures (as soon as I am in Rotterdam and connect the camera that is, so check this space tonight)!


Enjoy,

Thijs


As Promised -PHOTOS! :)

Here is a photo log of a typical day in the life of Noah:


Here I am modeling the latest in head gear, the corrective helmet with cool cartoon styling. A true trend setter!


I am teaching my parents how to feed me. They keep trying this bland rice flakes and so I let them know that acceptable food is marzipan, pears or carrots. I just don't do rice flakes love!


Here I am getting ready to crawl around the bed. I let mum or dad give me some support as my tummy is still a bit tender.


After all these activities I like to check my blog to see who has left me some comments to read.


Phew! It's hard work being a kid in the 21st century! It's 18:30 time for bed. YaaaAAAWWN! See you all soon in Den Haag.

xx Noah

PS - I breathed for myself for 8 hours today all in one go - no machines!

Only 22 more sleeps!

So what's been happening this week?

Monday and Tuesday I spent in bed trying to sleep off this horrible cold that seems to be knocking people over this winter. Thijs yet again stepped up to the plate and took some leave from work to look after Noah. Noah thought it this was fantastic fun getting to play with his Dad all this extra time. What's also great is that now we can take Noah out from the IC Unit in his push chair on our own, without a nurse. It's a bit of a palaver loading up all the equipment we have to take with us, but it's worth it. Noah looks a bit amazed, he just stares, drinking in all the different sights and sounds, but he doesn't cry so that's a good thing he's not so scared of experiencing new things. He's a very brave little boy, but we knew that didn't we?!

Noah is up to 3.5 hours breathing practice, twice a day off his machines, fantastic! Tomorrow we start on 4 hours. He gets a bit tired, but this is all very hard work for a young fellow. So we make sure he has plenty of naps during the day, which he sometimes fights as he is having far too much fun playing! I've been playing the Disney compilation set he got from Sinterklaas , and he loves dancing along to the tunes.
We've been working with the follow up team, Noah had his helmet delivered. The helmet will help his head resume a normal shape instead of being flat at the back from where he's been lying in bed. You can see here that the back of his head is a bit out of shape.


However, Noah has very sensitive skin so we've had some problems getting him used to it. We had a gentleman from the follow up team come and refit his helmet so now he's all ready to start getting used to wearing it.

After his recent bout of diarrhea, he's gradually gaining back his lost weight. He's now 7620 grams. He's grown out of another set of clothes, so now I get to dress him up in all his new cool gear.
Noah has a set of physio moves he needs to do every day. One of which is lying on his stomach and seeing if he can lift his head up. Not only does he lift his head, he's doing baby push ups using his arms, and at one point he had his knee under his hips and started moving backwards down the bed! This is all positive stuff for his future, keep going Noah!

Both Thijs and I are now fully taking care of Noah, giving his medication, taking care of his sonde and canule, we're all set to bring him home. Thijs just did his exam last thursday, here he is changing Noah's canule.

It's given us a lot of confidence and sometimes even the nurses are happy with our help - as one commented to Thijs when he walked in over the weekend. It was a mad-house in the IC Unit so the nurse was relieved to have one less patient she needed to take care of. Glad we can help!

Oma and Opa were here on Friday, both are working on their certification for taking care of Noah. Both have now changed Noah's canule band, (the strap that holds in his canule, Noahs only way of breathing). As you can imagine, it's technically not difficult but emotionally it's incredibly hard. It's not quite what you imagine doing when you think about looking after your first grandchild, but they are doing a fantastic job of just getting on with things, the way they are.

Saturday we both had a fantastic day with Noah. He had a great day, smiling and charming everyone. He was even sleeping when we came in, so I had a chance to speak to some of the mums that were in the room. One of the mums asked me how come such a healthy child was on the ICU, that cheered us up for the whole day! :) We left for Den Haag on Saturday night. Before we left, we checked on Noah to change his pampers and make sure he didn't have any wind or cramps during the night. He slept all the way through his pampers change. I picked him up and threw him over my shoulder like a sack of potatoes and he let out the loudest and longest fart ever! The mums in the unit burst out laughing, I thought at Noah until I turned around and found Thijs pointing at me - the rat!! :) Can you imagine, he was still fast asleep when I put him back!! This boy could sleep through an earth quake even if it was under his bed!!

Sadly on Sunday we had to spend the day in Den Haag doing all our laundry and admin. We hoped to be back at the hospital before the day shift left for the day, but we didn't make it. Now we know we have to shuttle back and fore to do the laundry we'll organise it a bit better for the future. However it's another reason for us to get home as quickly as possible.
We've decided to move back home just before Noah comes back for his test visit on the 11th of February. We've still got a lot of organising to do before he comes home, most of it relies on the hospital arranging delivery of his equipment, so you can imagine just how relaxed and happy we are in this situation! ;). Anyway we are doing all we can, Noah has already been fitted into his carseat so he won't be to shocked by the journey.


Lilo is doing great. Apparently her tail is starting to look like an antenna whipping around her bum! She's keeping busy dragging logs around the forest, chasing down tennis balls and keeping her pack in line. Marijke woke up one morning as she was having difficulty breathing. No, not a dreadful cold but rather a 40 kilo boxer that was hogging the bed and sleeping on top of her. To top it off, there was a 17 kilo Lilo sleeping on top of the boxer!! Deep breaths Marijke!! :)

So here we are at the end of another busy week, and the start of another. Only 22 sleeps, and tomorrow I'll start the day by marking off another night on the chart hanging above Noah's bed. Thanks for all the great comments on the last post, the phone calls and Noah's card. We can't tell you how much it helps us keep going, so thanks.

The network connection is playing up at the moment, so it's a bit tricky to post and check mail but we'll try and upload some cute photo's of Noah going through his daily routine. Otherwise we'll sort it out next weekend. Have patience and please keep the comments coming.

Much love,
The Drosten juniors
xxx

Certified or Certifiable?!

Just so you know where I’m going with this thread I’ll start with the line, “I’m not one to moan but …” and you can decide if you want to read any further. :)

It’s 25 nights sleep before Noah comes home. Never has time seemed so elastic, the days are flying past because we have so much to arrange and yet they are taking forever to arrive because it’s 25 whole nights until we will finally be a family.

The thing about having an ending is that you can’t help looking back at the start of your journey. Well, when I say looking back, it’s actually more like having flash backs. This whole situation feels a bit like surviving a ship wreck. Here we are treading water with our faces barely above the surf because we’re tired; we’ve been here too long. Every now and again a wave comes along that’s just too high but somehow we extend another burst of energy and manage to fight to the surface and keep on paddling.
One such wave is the ARBO doctor. All I will say on this subject is that going to one of these “people” is like going to a pedophile for parenting advice, not an enjoyable experience and leaves you feeling like you need a good wash after wards. Enough said!

Living in a single room for several months, practically nose to armpit with your beloved, makes you very happy you married someone you like, and that washes regularly! :) Thank goodness for the portable DVD player and the load of fantastically ridiculous movies to help you escape in the evening.
It’s great that there is such a place as the Ronald McDonald, (or as we, his close friends call him, Ricky McD!), but you can have too much of a good thing. The new house is fabulous in its space and the amount of modern equipment it houses; but I have to say it’s not for me. The large open communal areas just leave me feeling very exposed and under the spotlight. I suppose some people are glad that there is an area where people can come together, but I dread the well meaning questions, and seeing the shell shocked parents avoiding eye contact, I find it so sad and upsetting. I’m glad we have a room to go and sit and eat our dinner. I’m really looking forward to finally eating a hot and not warm dinner. 25 nights to go!

It’s not all lying around watching movies and cooking gourmet meals you know! Thijs and I have to study, follow planned steps and pass exams. Thijs, being the brainiac he is, has of course passed his first. Although we all knew that Thijs is a papa for 6 months and 2 weeks, this was not official! As of now, in accordance will all the plans, steps and exams set by the hospital, Thijs is a fully qualified and most importantly a signed and certified care giver for his son. Hoora! Hoora! I am still an unofficial mum; I hope to pass my exam next week on the 29th. Wish me luck won’t you? I dare not fail, I need my permanent contract!

I’m feeling a bit emotional because I’m in the process of stopping giving mummy’s milk to Noah. On one hand, it’s a good thing, as I have some time where I can put to use on myself doing my yoga and all that. On the other hand, it’s the end of a phase in Noah’s childhood; I never got the chance to actually breastfeed so that makes me feel a bit sad. But I guess this is something that all mums can associate with, I’m so proud of all that Noah is achieving but there’s a little tiny bit of me that misses that little helpless baby. Completely soppy and girly, I know! I did say I was feeling a bit emotional or should that be irrational?!

Well that’s quite enough reflection, let’s look at the future. The best thing about being certified is that we can now take Noah out for walks. You can imagine for the little guy that’s only been in a controlled and warm environment what a big step it is to go outside. We don’t want to overwhelm him with too much all in one go. Coming home and the BIG change in his environment will be enough of a surprise, so we are planning some small excursions for him to get a little acclimatised to the outside. We also have to do a test run in the car. I wonder if he’ll fall asleep. That would be just like him, he seems to breeze through all the big steps.

Take, for example, practicing to breath off his machine. The doctors thought it would take a long time to build up, but NO! Noah is off his machine for 6 hours a day. At 2 x 3 hour intervals and next Monday he will go to 2 x 4 hour intervals! This is a huge difference in the outlook for his home situation. For a start we no longer have to move because we can’t navigate the stairs with him and all his equipment. So the house is off the market. There’s time to make gradual changes and let the dust settle a bit before we have to make any big decisions and that is a HUGE relief to us both.
The last question waiting to be answered is how much support we will receive from official channels. We’ve received the advice from the hospital, and it is very generous, but this needs to be signed off by the city council. After that we have to see what kind of help is available to us in our area. We just found out that 2 medical crèches had to close down in our area because people couldn’t afford to pay for them out of their budget, so we’re curious to say the least! Well, we’re keeping fingers, toes and eyes crossed, (a weird British habit that’s meant to bring good luck!), that it all turns out well!

Thijs and I are planning 2 weeks of at home vacation for when Noah arrives home. After all this craziness, the noise and chaos of the IC unit, the constant scrutiny of so many people, we’re really looking forward to going home. Home, where we can close the door, enjoy the quiet and be a family alone but together at last. 25 nights.

Sweet dreams xxx

February 16 !!!

Hi All,

We finally got a date from the doctors: February 16.

This means that right now we are very busy arranging everything to do with Noah being home. Help around the house, (medical) supplies, his room, general paperwork etc. Also we have to make sure we finish all our nursing training quickly, and let my parents have a chance to complete theirs.
So we are very excited, but posting may be less for a while, because we will have to travel to The Hague a lot to arrange everything in the house, and will have even less time then usual.

Ofcourse we don't want to stop you looking here, so some pictures to help you along:

Noah and his grandmother.


And Noah's first trip outside!

Hopefully another post soon,

Thijs

Happy new year everyone.

The very best wishes to all!

There is not much news from here, which in our opinion is good. Noah is still doing very well, and he is growing, developing and in general very happy.

I'll just post a few highlights:

- There is no news about our home care, or about the house. So for now we have decided to live in The Hague, and see how well it goes. We most likely qualify for a lot of home care, but until this is decided we remain conservative. It looks like we can hope for nursing for 7 nights, 2 days of medical daycare and an unknown number of additional hours. Also some provisions for holidays may be in the packet, but again we are not sure. This is still a mayor worry, but as we cannot afford two mortgages we will stay in The Hague for now. Also it looks like the amount of care and offers for help from neighbours will be enough to manage for now.
We are still looking for a new pram, to enable us to take all his equipment, but still manouvre around in the city, and will fold away for storage in the hallway. Yes we want it all, as usual.

- He is now allowed to breathe on his own, without any machine helping him three times aday for half an hour. This is really great because the little cap to provide him with a tiny bit of extra oxygen is so much smaller then the usual tube, he can move around much better.



- We are trying to give him more solid food, for now this is just training, but he gets a bit of 'pap' with every meal during the day. It is only 10 ml of milk with a bit of babyrice or carrot usually, but he seems to get the hang of it. Also he will be going down to 7 feeds a day,from 8, skipping his three o'clock in the night feed. Good for when he comes home, so we can get some sleep.
The eating is always entertaining:




- Lastly he has grown even further, and is now 68 cm long, and weighs 7.830 kg. Which is almost 27 inch and 17.3 pounds for the more metrically challenged among us :-). This means that he is growing out of stuff, but also starts to fit into some new stuff, including some very fashionable boots!:




Noah wishes you a merry xmas (a bit late, but hey he is still a baby) and a happy new year!



Time for another nap (P.S. Don't try this at home with a baby that breaths through his mouth/nose)



See you all next year,

Louise and Thijs

Make some room in your diary!

In typical Noah style, he's been keeping us busy.

Noah is now starting to eat real food. He got bored with only milk, and so we decided to try him on carrots. How else would we keep his hair lovely and red?!

He's not to sure about taking food from the spoon, but he enjoys taking food from fingers and that seems to work ok! He only eats a few mouthfuls but that's a great start.


Both Thijs and myself, Oma, Opa and Auntie Anneke have been busy doing training to take care of Noah and all his breathing apparatus. This means we are able to take care of him without a nurse present when he comes home.


Here is the news we've all been waiting for ... ... Noah is coming home!

Yes, it's true!
We were officially informed yesterday that the hospital is now planning for Noah to come home mid February to the beginning of March. That's only 8 weeks away!
There are lots of things to organise, but the hospital will help us out with a lot of it, we hope! We're also trying to sort out a baby carriage so that Noah can go outside. As you can imagine, we need to take a lot of equipment with us when we take him out. The beautiful pram we bought isn't suitable, so if any of you know anyone who has been hoarding an old fashioned baby carriage up in the attic, the type with the metal tray underneath, tell them to dust it off and get in touch please! We both can't wait to get him home and away from the hospital environment. As soon as we're settled we hope to see you all.

As if this weren't enough of a shock, yesterday the doctor decided to try and see just how far Noah could go. So he took him off all his breathing devices and just gave him some extra oxygen. Noah breathed on his own for 15 mins with no problem! Actually, he was quite upset to go back on the breathing machine, but it's much too much hard work for him to breath all of the time on his own.

However, this does show that it's a possibility for the future. So he now has 15 mins per day of self breathing added into his daily activity in order to strengthen his lungs further.


The doctors and nurses are so amazed at his progress, this has really thrown them into a spin. They are planning another meeting to decide exactly what this means. However Thijs and I just look at Noah and see him giving his cheeky grin and think that this is just typical Noah behaviour. He writes his own rules, go Noah! :)

We also had some people ask whether we received their post, yes we have. We do check regularly on the house and collect the post, so thanks for all the cards we've received, we've put them up around Noah's bed and it's starting to look very festive. The play nurse asked me to decorate the Christmas tree in the IC Unit. She gave me some very tasteful decorations, which I just could not in all conscience use - so I went home and dug out some of my 'unique' baubles and I think the tree looks very festive especially with the traditional Christmas Frog - you'll all want one next year! There was a certain degree of interest from visiting children, so I think it worked out ok.

We're now settled in at the new Ronald McDonald house. It's very modern and only a few steps away from the hospital so that's a good thing.

It's very late so I will just get this posted, Thijs will work on adding the photos later in the day. We are totally not prepared for Christmas and so we need to do a little bit of shopping (mostly to see just how stupidly expensive a new kinderwagen is!!) so the photos may take a little while. I'm thinking of celebrating Christmas in March, I just might be prepared by then!!!!


A few more pictures from the Clini Clowns visiting, and hopefully more news soon!


Tot binnekort!

xx The Drosten juniors

The Latest Adventures .... plus photos!

Hi everyone,

As you probably guessed, we have been very busy, but with what?
Well, we'll tell you about that. First of all what we have been doing, and then how Noah has been doing, so feel free to skip to the next paragraph! (And of course pictures are included!)

We have moved to the Ronald McDonald permanently, and have put up our house for sale. Feel free to visit www.funda.nl, (the dutch housing for sale website), and put our address in. We de-cluttered the house, Anneke helped us, plus she took the first few boxes of stuff away to make it look all nice and tidy. We have already had two potential buyers even in this difficult time, so we are very hopeful. It does help that the house is beautiful :-).

The MickyD house is quite nice, here is our view from the window, a few buildings are obscured due to the snow, but it's a nice atmospheric photo!:


And two shots walking home at night. Can you see the heron in the water? The Erasmus hospital is the white building in the background. The colours of the light in the corridor are a representation of the days weather and so it's always new. A very nice piece of art in my opinion (the lights not the iron thing!).
We are not really looking for a new place to live yet, as we don't know how much home care Noah needs and how much financial help to assist with this care we are entitled to. Above this, we can't afford two houses at the same time. We are just starting to investigate how we go about arranging for home care and we are anticipating needing a lot of time to battle through the next layer of forms and bureaucracy.
Louise has had another meeting with her work doctor, who recognized that her stress levels are too high and her fitness levels are too low for going back to work.
Also we have been caring for Noah, who is more interactive and demanding of our time. With that we go on to the stuff you are waiting for - The Noah Update! :)


The last two and a half weeks have had a lot of ups and downs but most of all, a lot of time spent waiting for things to happen.
It started of with Noah's new corset breaking, a replacement was ordered immediately. At the same time Noah was giving a full review. Well, at least all the different specialist were asked to take another look and advise on continuing his care. And so the waiting started......
Without his corset Noah was not able to burp and fart as before, so he was less happy, although not in a terrible way. He was grumpy a lot of the time, and it required a lot of attention from us to settle him down.
A few days after the promised delivery date of his new corset finally arrived, it turned out to be too big! Even though they made it from the same measurements as the first one, it was completely useless. A new one was ordered again.
In the mean time we had spoken with the doctor who promised us that as soon as the corset arrived Noah would be starting on his portable home breathing machine. This is the biggest step forward for him since birth in the process of going home(keep in mind that we need to be trained to use the machine before he actually goes anywhere). You can imagine our disappointment at the delivery of the wrong size.


The new delivery was also delayed, so we had to stare at the fully set up home machine standing idle in the corner for another weekend. But last Tuesday afternoon the corset arrived instead of the Friday morning that was promised, but we were so happy it finally arrived that we didn't complain too loudly. We imagine it must be very busy in the corset making industry this close to the festive season!
Unfortunately ............the nurse qualified for setting up this specific machine was ill, and her replacement was not in till Thursday....... We were now a full two weeks delayed.
We got a stern talk on Wednesday during our regular meeting with the doctor. He warned us that it is very difficult for babies to change breathing machines, and they have to be weaned very slowly. Half an hour a day of using his new machine would be a great first start.
Thursday everyone was ready, and a lot of people gathered around his bed. Louise, the doctor and his normal nurse were there, plus the breathing specialist. They were a bit worried, and even put some calming drugs out in case he really wouldn't like his new machine. So the switch was made, and everybody held their breath for a few seconds...
Noah yawned, burped, and farted very loudly before promptly falling asleep! This cleared everyone away from his bed quickly since they had to breath after holding their breath for that long :0). He is actually doing so well that he has just kept going ever since, not even having a break during the night. They have even removed the hospital machine:


We are very very very happy about this big step forward. We should start our training on the use of his machine on Thursday, and then we will be able to see the end of the hospital hopefully in a couple of months.

Other stuff that has happened:

We noticed that Noah was drinking less and less from his bottle, so a specialist was asked to have a look (one of the many from the big review). It took about three weeks for someone to actually show up, but the result is that Noah will start on semi solid food (pap) on Monday. He seems to be getting his teeth, (yes! teeth not just one for our Noah!) so we wanted to try solid food soon anyway. Another nice step in his development!

With all these nice things, it was a bit unfortunate that Noah had another incident last Monday due to the stupidity of the specialist nurse that takes blood. She started without his assigned carer or one of us there. Noah panicked because of the pain and she did not recognize it, or know how to handle it. During an incident he forgets to breathe and starts turning blue......Luckily Louise walked in and called over a nurse to give him more oxygen while she settled him down. While Louise was settling him, his cannula fell out, which brought all of the nurses running. Everything was put back immediately, and with plenty of oxygen Noah recovered very quickly. It was over within a few minutes, but these kinds of things leave us completely drained.

On Wednesday Noah got a fabulous chair, which two of the nurses went and bought for us as we were busy at the hospital looking after him. Thanks ladies! This chair is great as it secures him in place leaving your hands free to interact with him. He loves it, and so do we! Her are two pictures, one with a chair we borrowed from the hospital, and one in his new one!



Thursday he got a new feeding tube, because the old one was leaking. As he always has a lot of wind problems this tube needs to be finely tuned, a thing which would have some serious consequences..... We finally got a full written description of Noah's medical problems and history. We will read this carefully and try to phone or visit my uncle (who is a pediatrician) with all our questions and for translation of medical terms. I will try to update the side bar of the blog to give you a full description, now that I no longer have to rely on my memory!

Sinterklaas visited on Friday, presenting Noah with many presents, and of course pepernoten (this is the dutch version of Santa Claus, who brings seasonal mini cookies as well as gifts).

Despite the picture he seemed to enjoy a softened, soaked pepernoot.

He also brought a vaccination, so Noah is now up to speed on those as well.
Noah needed his feeding tube (sonde) tweaking a bit because he couldn't release air through his sonde, causing him to vomit, and causing a lot of distress. It needs to end in the top of his stomach, so the excess air can easily escape through it otherwise pressure builds up.
Later in the afternoon my parents dropped by, bringing more gifts, a piggy bank shaped like Noahs ark. Absolutely fantastic!
The plastic surgeon was another visitor who came by to fit Noah for a helmet. This helmet will help encourage his head to grow into a more normal shape (he has been in his bed more then normal kids, so the back of his head has gone flat).

Saturday Nonkel and Lia came by, and gave him a book. Since Noah loves reading it was the perfect present!
When Noah fell asleep, we went downstairs for a coffee. When we returned to Noah after their visit we walked in whilst he was having another incident. He had actually turned completely blue - gray, which was incredibly scary. I was there first and managed to make contact with Noah which always helps. It quickly turned out that his feeding tube was still not in the right position, and when Ichanged his position an enormous amount of pressure was relieved from his stomach (usually know as projectile vomiting). The nurse had to breathe for him with one of those balloons that you see in emergency programs and pure oxygen. It took over an hour for his heart rate to drop to normal levels, so we had a big scare that evening. The strangest thing was that once Noah's oxygen levels went up (within minutes) and he got back on his home breathing machine he kept breathing for himself without problems. Tough little man he is!!


Today Tanja and Rob visited, and brought him some lovely new clothes. We will put pictures up of him in his new outfit soon, for you to check them out. Otherwise it was a blessedly uneventful day.

All in all, a long time of waiting, finally lots happening, all in a few days and a big step forward. The scary bits can be explained, and happen when we are not there to calm Noah down, help him burp and fart and generally take care of him. Some nurses know Noah very well, and do the same, but they often have to take care of two or more patients as well as their paperwork. Also nurses unfamiliar with him don't know how sensitive he is to some things, while being very tough in other areas. So that is why it sometimes takes a while for a new update. We spend the time drinking a proper glass of whiskey instead :-).



Thijs and Louise