Quick update

Hi everyone,

Just a quick update. Noah's breathing has progressed a lot most likely due to the corset we (and the doctors) think. He is now on 18 hours a day of needing only little support, which is a very promising step. As soon as he is on 24 hours of minimal support he can be transferred to a simpler breathing machine, which can be taken home. The transfer, getting used and training process will take a lot of time (months) but it now seems that he can indeed come home in the near future.

T o show you his smile, we had to rely on visitor, Marijke and Frenzey, who have a vast experience of trying to catch running dogs on camera. They managed to get a good shot of the grin :



Also they told us Lilo is doing fine, and send some pictures to proof that Lilo gets the royal treatment, including her own throne!


Of course an afternoon snooze on the couch is also allowed, as part of the royal treatment.


Well, more news soon, because we are busy arranging lots of things for when Noah comes home, but we'll write about that some other time.

Thijs

Picture post

Hello all,

After a bit emotional post, now some hard fact and new news! Of course with lots of pictures for the new internet generation, that doesn't like plain old words :-).

First a picture of one of the nurses, going to clean Noah's throat, which crudely described is like vacuum cleaning the little breathing tube. Luckily Noah doesn't mind this much, he is quite relaxed waiting for it to happen.
As you can see here after the cleaning. His tube needs cleaning quite often when he is active, up to every few minutes when he is drinking his bottle (swallowing means movement around the throat, which irritates and releases phlegm). When he sleeps, his tube hardly ever needs cleaning (all though he often needs a lot of cleaning when he wakes up and starts moving).

Not the best picture ever, but Noah refuses to let his smile be captured on camera. Still you can see he looks happy!
To make clear how difficult it is to catch the smile on camera: even when bopping in his chair he still hides it behind a soft toy. Camera shy?


To annoy the nurses we bought a Toy That Makes Noise (TTMN). The TTMN also has flashing lights, lot's of different noises, and a feet operated bit. We feel it may too much, because we have caught nurses playing with the TTMN. They claim they were setting it up for Noah, but we are nor sure if we should believe them. Anyway, for all of you that think these things make great gifts: THEY DON'T. Thank you from the parents :-)


Random picture without much comment. Cute though......



Even for babies, but also for their parents life goes on, and we had the pleasure and honour to be invited to Franks zero st birthday. He is a friend of Noah (well their respective parents are friends anyway), and was also born a bit early. The party was to honour the day that he should have been born, and his successful move home.

As you can see Frank is not impressed by the festivities (he spend a bit of time in the hospital, teaching him to sleep through an absolute racket).

The feast was big (this was a breakfast/brunch party, and the hosts did not dare to put everything on the table for fear of collapsing it)


And a last shot of Franks proud and happy parents.





Now a new development: Noah has a corset (like one of these tellsell programs). Here he is showing of his new, slim figure. It helps a lot with his breathing, allowing him to sleep while only needing the machine for support. Before his breathing frequency would drop too far, but now he can maintain a normal breathing frequency. Of course breathing this way is still exhausting, but he is back up to 3 periods of 4 hours of breathing on his own, with the machine for support.
The corset also seems to help him fart and burp. This may not seem a thing to be happy with, but Noah has had a lot of wind pains, and moving air out his system is, as far as we are concerned, good! (and sometimes smelly).

Anyway, this is Noah showing of his slim new figure in his American cowboy look. You can imagine him yelling 'rawhide' here (still soundless of course). It was actually a yawn, but it was nearly 7, bedtime for little babies anyway!

And as a final one, a personal message from Noah (in true American style):

I want you:
To visit!


My parents will organize a party sometime for me, but in the meantime don't be shy!

So, we will post soon, and hopefully organize a date when we can get a room and catering and nursing staff to be able to have some cake in Noah's honour. This will in be in January, hopefully......

Louise and Thijs

Inspiring poem

A friend sent me this a while ago, but I only just read it (I'm a little behind on my mail!). I don't normally pass on stuff like this but, without realising the impact it would have, my last posts have affected people quite deeply.
We believe we are blessed to be Noah's parents, and so lucky to have friends and family like you. So when I read this poem, I felt that it expressed perfectly what I believe, that there is a plan and that plan is perfect, we just don't see it all yet.
I hope you will find some comfort from reading this poem and that it's not too mushy! So thanks Peter for sending me this.

You are who you are for a reason....

by Russell Kelfer

You are who you are for a reason.
You're part of an intricate plan.
You're a precious and perfect unique design,
Called God's special woman or man.

You look like you look for a reason.
Our God made no mistake.
He knit you together within the womb.
You're just what He wanted to make.

The parents you had were the ones He chose,
And no matter how you may feel,
They were custom-designed with God's plan in mind,
And they bear the Master's seal.

No, that trauma you faced was not easy.
And God wept that it hurt you so;
But it was allowed to shape your heart
So that into His likeness you'd grow.

You are who you are for a reason,
You've been formed by the Master's rod.
You are who you are, beloved,
Because there is a God!

Pictures

A new set of pictures for you to enjoy!

First of all, Noah needed a EEG because the doctors thought that during his incidents he looked a little bit like he had an epileptic attack. It was only a check of a remote possibility, and nothing like that was found, but a great photo moment!




Here is Noah in his gym, working out while his Aunt Anneke is supervising the excercises (out of picture)

Maarten O.L. also dropped by, but all the exercise made Noah to tired to wake up.
And it was also Halloween recently, for which Noah has a fiiting outfit.

Another very fitting outfit. (I won't remember any of this)
Off course plenty of bath times, but one picture will probably do for now.


Opa and Oma also come to visit quite often, so here is Opa with Noah.Well, hope you enjoy, and more post (and maybe even pictures) will follow soon.

Thijs

Conversation with the doctor.

Hi all,

We had a very helpful discussion with the doctor and his nurse. We have a good idea of the extent of Noah's condition, but how it will affect him long term is still unknown as each child is different and some of the things Noah has are unique. During his incidents a lot of different tests were run and as yet the full findings are not known.
Dr Joost, Noah's primary physician, is planning meetings with all the other doctors involved in Noah's care and together they hope to create an overview of his condition plus a broad plan of treatment.
Dr Joost went on to explain that they work in concepts. The first concept was to send Noah home without a cannule after they had operated and removed the obstruction in his throat. Due to the setbacks and the slow progress he's making, they are looking at a different concept. The new concept is to wean Noah from his hospital breathing machine on to a machine that can be used at home. This way Noah can come home and do the necessary growing required to overcome his problems. They believe that an extended stay in hospital is not the ideal place for a young child’s development, home is best!

OK, so to the areas that CHAOS has affected in Noah. First there is the blockage in his throat. The blockage covers his voice box, and they see that his vocal chords are fusing. They are still unsure as to how much vocalisation he will have in the future.

Next are his lungs. The tubes that make up his lungs are soft and prone to collapsing. There are no drugs or operations available to fix this, it takes time and growth. However, the length and weight of a child has no bearing on the strengthening of the lungs. They have seen children grow over this, some take months and others years, so this is one of the unknown factors. It is a crucial factor affecting when Noah can receive his operation. His lungs must be strong in order for him to be able to breath on his own before they can remove the obstruction.
During last week’s camera examination into his lungs, they saw that his major bronchial tube, where it splits into each lung, pulses. They think that there is an artery pressing against the tubes and, because it is soft, this is why they see a pulse. The pulsing causes the tube to narrow, and this in turn is limiting the amount of air and pressure into Noah's lungs which they believe led to his incidents. They have done a CCT scan, where a phosphorous fluid is introduced to the blood stream and then photographed, to see whether this artery is malformed or is just out of place. Analysing the results is a complicated task and so we're waiting for the results of this test. We hope to have the results explained to us sometime next week.

After the lungs are Noah’s distended belly. They believe that there is a leak in his blood vessels and that’s why there is fluid collecting there, but as yet they cannot find where the leak is coming from. His stomach muscles are stretched; this could have an effect on his development such as sitting, and walking. They hope that in time the leaky vessel will stop leaking and that his lymphatic system will kick in to cope with the excess fluid. At the moment they treat Noah with a diuretic (plas medicine) when the fluid makes him too uncomfortable. Again time is needed to see how Noah’s body will handle this.

Noah has a gap in one of the chambers of his heart. This would normally cause flooding of blood towards the lungs; however, he also has a narrow valve in the chamber to the lungs, so this cancels out the effect of the gap! A lot of healthy children are born with this gap, and it can be self healing and so this is another unknown. We just have to wait until he’s a bit older to find out if this is a problem.

Noah has a small liver and his intestines are not where they would usually be. It’s not known if this means anything, but it’s a genetic fault that could be used as a marker to identify CHAOS. Again, only in the future will we know if it affects Noah in any way.

Working in Noah’s favour is the fact that his growth and weight and development are on target for a normal and healthy child. Considering all of the above, this is a very strong plus, quite a miracle really! So it’s an optimistic outlook for his future.

So now we have a roughly drawn box around Noah’s version of CHAOS. What does this mean for us as a family in the future? We’re still trying to work that out. The family is giving us very strong support and this is helping us to keep our options open. Uncle Jan will be joining us next week to help us understand a little bit more about Noah’s condition and perhaps have a better understanding of what his long term care needs will be. It’s ok knowing what’s wrong, but what exactly this means in terms of everyday life is still a bit fuzzy to us. So I’m glad we’ve got someone that can help us here.

You’ll be glad to hear that Noah has had a really relaxed couple of days. We’ve seen that he’s mastered the laugh. It’s no longer quick smiles, it’s full on toothless grins! He’s also reaching for things a lot more and he’s starting to want to eat everything that goes near his mouth. Yum-Yum! He’s still the darling of the nurses, they argue over who gets to look after him, he’s very popular.

Tomorrow we’re back to Den Haag for a visit with Frank van Velsen who is having his zero birthday. Noah is sad not being able to go, but he is looking forward to his Jelly and Ice cream flavoured mummy’s milk later in the afternoon!

Thanks again to all of you that comment on the blog, please keep them coming as it’s good to know how many people are out there reading this. Hopefully if things stay stable for a while we’ll get a chance to catch up with sleep, outstanding e-mails and phone calls.

xxx The Drostens

p.s. New photo's will be uploaded soon!

Everything Changes

Hi all,
We came down to earth with a bump yesterday. The ENT (KNO) doctor together with the lung doctor took a look inside Noah. They found that the lungs were soft and prone to collapsing, (malacosis), making it difficult for Noah to absorb oxygen, which they believe probably caused his episodes. There is no operation or medicine that can cure this. The hope is that as he grows so will his lungs grow stronger, as ever nothing is 100% certain but it's hopeful. This, along with the other complications he has, is predicted to take around 2 years. We're not sure whether this means 2 years on a machine, 2 years with a canule or a variety of other scenarios that have been whizzing around in our heads since we got this news.

In fact things are so uncertain for us that we've started to discuss in earnest with the hospital what are the options for Noah. Lots of information has been given verbally, some of it is contradictory, but we have nothing as yet in writing. We would like to be given an overview of Noah's condition, his treatment plan, a prognosis, a time line and a defined role in his treatment. This is all very bureaucratic but we hope by defining the borders, we can help lift this feeling of being in limbo. We're lucky that we're dealing with people that want to help us and so we are sure this will have a positive outcome. It does feel a bit overwhelming at times trying to find who is the right person to discuss the different aspects of Noah's care, but we feel that we're making some progress now. Our goal is to secure a more proactive and holistic approach to Noah's care and to get him into as normal an environment as possible as quickly as possible.

As for Noah himself, he's still a happy little guy. He smiles and plays and is always happy to see people. He's incredibly brave when they need to take his blood or insert an intravenous infusion. He's growing in length, gaining weight and developing like any other child (apart from things like lying on his belly and being able to vocalise of course). It's so easy to forget that he really is very ill and so it's such a shock when things like these episodes happen. We don't want to treat him like a sick child but rather we aim to stay positive around him and encourage him to develop as much as he can, and so far - so good!

So all in all, it's a lot to take in. We're trying to find out what this all means and it's difficult for the doctors to predict this because not only are we as humans unique but in this case Noah's illness is also unique and very little is known about it. I know that this is not all good news, but I hope by sharing it all you realise it's not all bad for Noah either. There is always hope, and miracles. Let's face it, Noah being here and his capacity for happiness is a huge miracle. He is still the best thing to ever happen to us and we're very grateful.

As ever, please keep Noah in your thoughts and prayers. Thanks to you all as well for your support and comments to us. They really help us be there for Noah.

The Drostens

Another good day

Noah had a happy Sunday. No incidents through the night, nor during the day. He kept the nurses busy all day by pulling off his breathing apparatus. The nurses would try to tell him off but he would just smile at them, he's just so cute. I have to think that Noah is telling us "hey, I don't need no stinking breathing machine, I can do this on my own - send me home!" :)
Noah has a new toy to play with. It makes the most awful music and has hideous flashing lights, I'm sure it will drive the nurses demented, but Noah loves it so who cares!

Thijs and I got some well needed rest last night, our eyes are again more white than red. I can't tell you how good it feels to be so close to Noah. I never realised what a weight I was carrying around until it was gone just by being so close to him. Even though Noah seems to have turned the corner, I don't think we will go back to Den Haag just yet. It's just too nice being able to go in and see Noah whenever we want to.

Next week, Tuesday, Noah is scheduled for a surgical look at his lungs and throat. I'm not sure if that is still going ahead now that he's getting better, but I will keep you all posted as soon as I know anything. Oma and Opa Drosten are going to visit on Wednesday so I'm sure that will cheer him up.

Well that's all the news from Rotterdam. Thanks again for all the messages of support.

The Drostens

A new day

Just thought I should let you all know that Noah had a great day today.

This morning he was able to enjoy splashing around in his bath, he'd kicked his infuse out and so we thought we would take advantage of this and I'm so glad we did. He managed to pee over me twice before I got him in his bath, the little tyke! I was able to take him out of his bed and have him on my lap to give him his bottle, which he drank all of his milk from (he's only been managing 50ml max and today it was 100ml). I read him a story, and he fell fast asleep.

This gave him plenty of energy to play and kick about when his Auntie Anneke and his friend Maarten from Arnhem arrived. His Aunt got loads of smiles out of him, he was focused completly on her while she helped him kick the stuffing out of his stuffed animals!

I have to admit to shedding a few tears of relief and happyness in the expressing room, (kolfing kammer), I feel hopeful that Noah turned a corner today. His incidents have gotten less frequent over the week, and for the last two days most have been managed without medication. We still don't know why this has happened, and to be honest, as long as they stop - I don't really care! :) He is now deep and peacefuly asleep, we wished him another restful night.

Sleep well.