So what's keeping us so busy?

You may have noticed that the regularity of blog updates has dropped off considerably since Noah has come home. So I thought I would explain exactly what's keeping us so busy.

Taking an intensive care baby home involved a lot more than we were prepared for. For me it's meant that I have to wear many hats, or loosely translated, learn to cope with different situations by using different skills.
There's my mother hat, where I'm just loving and enjoying being with Noah without the worry of care giving.
There's the nurse hat, or the care giving by taking care of his trachea canule, administering medicines, inserting feeding tube, monitoring his condition etc. etc.
There's the personal manager hat where, together with Thijs we are planners, employers, budget controllers, coordinators and inventory controllers.

I admit that I dislike the administrative side of caring for Noah but at least it's straight forward. It's been a challenge and I've had to learn some new skills, plus I'm learning that forward planning is not just nice, it's essential!

The actual caring for Noah is incredibly busy but it feels good to be able to do it for him. Both of us from the start wanted to learn how to take care of him, so that Noah could receive consistent care and we could feel that much closer to him. We're both quite proud that we can do so much for him. I just wish I was a bit more confident in my abilities.
What I mean is that I do believe in myself as a mum but it's tough to be the carer because it's literally on the job training with a very steep learning curve! There are no reference books, there's just your own judgment and of course Thijs is always supportive and we're able to bounce ideas off each other. We're always aware that the consequence of getting things wrong is that it causes Noah pain or illness so that's what makes it quite daunting.
Another aspect of taking over Noah's care is that as soon as Noah masters one developmental milestone, there is always an "expert" on hand to tell you he's behind in another area. Which in fairness is their job, they have to see the problems in order to provide a solution. Lack of sleep and high stress levels don't make you a very rational person though! I can never really know if I'm doing a good job because there is nothing to compare it too.

I know that Noah is a lot happier at home, but I was not really that certain that it was good for his health to be home or if it wasn't better that we just arranged 100% nursing and that I went back to work. Let me explain why I thought this.

Because CHAOS is a syndrome, we find that it's all about keeping a balance - ensuring Noah's energy is distributed evenly between all the different developmental areas whilst not tiring himself too much.
For example, at the moment we're training Noah's lungs to be able to breath off his machine, whilst at the same time training his stomach muscles to be able to breath deeper, while also trying to get Noah to eat real food so that he gets enough energy to build muscle and strengthen his lungs so that he wont need a stomach feeding tube, which means training Noah to not be dependent on his corset in case he does need a stomach feeding tube! Gaaargh!!! Everything is inter-dependent so my usual method of assigning priorities doesn't seem to work - these are all priority one.
As you know, Noah can only have the operation to remove the blockage in his throat when he can breath 24 hours on his own, without his machine, without oxygen support.

So food for Noah equals the energy he needs for all the growing and healing he needs to do, but since Noah came home we've been really struggling with trying to get food into him. He has his feeding tube but trying to get his milk to stay in him is an uphill battle. After 8 weeks of diarrhoea and projectile vomiting and no medical answers we suspected a sensitivity to his milk. It took a long while to find a suitable food but we hope that we've found it. Noah stabilised for a month or so, although we still had to deal with excessive gas which produces vomiting but we thought that was due to him swallowing so much air as he is sucking his fingers so much due to teething. However the situation changed these last 3 weeks and now we have constipation. It's been a real challenge to get medical people to understand why we were so concerned. At first I thought it was that my spoken Dutch wasn't clear enough. Now I realise that it's just conflicting styles of receiving and delivering information. With the help of one of the nurses that takes care of Noah and a sympathetic doctor, we've got appointments set up with a Logopodist (specialising in feeding) and a dietitian.
Yesterday we went to a different hospital to treat Noah's constipation. They took a routine X-ray to confirm constipation. They mentioned that Noah has a hernia in his gut but since they were not familiar with Noah, they wanted to investigate further. We're told not to worry, (hahaha!) With this many people working on this problem I hope that some light can be thrown onto why Noah has so much trouble with his food and best of all would be if there is an easy solution for it.


Next to the number one priority of getting Noah off his machines and breathing for himself, what's almost just as important to us is that Noah is enjoying as normal a life as possible. This means playtime, getting outside for fresh air, interacting with others and leaving his world open to all possibilities. Are there enough hours in one day for all this?
You can see that trying to get all this right, and knowing the cost of getting it wrong, that it would be easier to hand it all over to professionals.

Unfortunately it's not just caring for Noah. Sometimes it feels like we're taking on the whole world just to get the right treatment, equipment and correct level of care for our son. As if the stress of your son's illness were not enough, there is the burden of fighting bureaucracy on top of it. To be honest this can be crippling at times. I feel like we're trying to do a good thing. Our son is home, which is best for him and also good for the hospital because now there is an ICU bed free for a child that may need it.
As a family we decided to have a child, there are no guarantees and we accepted that. We've gladly sacrificed for Noah. Wherever possible we've taken responsibility for our family. But there are some areas where we need help. We desperately need help. Thijs has had to fight and fight and is still fighting to get the level of care that Noah is entitled to. We're lucky, really lucky that we've got good people trying to help us, but we're close to despair because it doesn't matter what we do, nothing seems to move these administrators. Giving up isn't an option but this costs us energy that we just don't have to spare.
It's a terrible feeling to be so helpless and to have to rely on a government body for compassion for your situation. I do not understand why no one has come to our home to assess our situation in person. If Noah's health were not so complicated then he wouldn't need so much care, which would mean that it wouldn't involve such a large sum of money (which by the way is set lower that what is actually costs to pay for the amount of care he needs!). So the more care a person needs, the less likely they are to get it, unless they are institutionalised and then it will be paid out.

Putting Noah back in hospital or in an institution is something we will never seriously consider. The hospital was too traumatic an experience for us to ever volunteer Noah to go there just because we're too tired.

I'm learning that it takes a lot of belief in yourself, trust in your partner and digging deep for reserves I swear we never knew we had to take care of our son, Noah. I've learned so much, not only about myself but also about Thijs, and we're much closer because of it.


So what turned the tide and convinced me that we're doing a good job? It sounds so simple when I write it down, but it was our holiday at the GretaBonteKoe. Thijs and I got some sleep, and some rest. We had time. Time to evaluate what we'd been through, where Noah had come from and how far he's come. We had time to discuss our thoughts and ideas and we realised that although it's been hard, we've actually done OK, in fact we've been pretty spot on with our ideas about Noah.
All this time we've been running from one emergency to another, struggling with our exhaustion and just keeping on going, we hadn't had the time to really evaluate our situation.
I cannot really express how it felt to walk downstairs and see Noah sitting outside in the sun laughing and looking at the cows in the fields and the other kids playing. Such a long way from lying in a hospital bed with tubes and drains in him. My heart felt so full of joy and amazement at our wonderful Noah, and that's the moment when I started to feel a little bit proud of Thijs and myself. I know you're not supposed to admit to feeling pride, but I can't describe it as anything else.

A lot of different "experts" predicted dire physical handicaps for Noah, we dared to hope for a different outcome and thankfully Noah has busted a lot of those predictions. By us not imposing limits, and having hope we helped Noah and eventually he will prove all of them wrong.
One of the most important things I've come to realise is that Thijs and I are the experts when it comes to Noah, everyone else is just making an educated guess!

Taking care of an intensive care baby is a huge investment, but the return is enormous. The joy of sharing that sense of achievement with Noah and Thijs is something I can't describe. All I can say is that this journey that our family is on is scary, tiring, exciting and amazing. What a trip! I wouldn't miss a second of it. But if anyone wants to lend a hand, don't let me stop you - especially if it involves taking on the zorgkantor! :)