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