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