7 weeks old already!!

Time is flying by so fast I can't believe that Noah is 7 weeks old today!

We have had a lot of cards and messages as you can see here.

I've spent some time this week making a small picture album and it's amazing to see the changes in Noah since his birth in Leuven. It feels like a lifetime ago and it's only 7 weeks!

Sitting up (above) and sleeping (below)

His bed which we try to decorate and make a bit more cheerfull. The hospital is a bit colorless.

So how is Noah doing? He's now weighing in at a healthy 4.05Kg's. The doctor didn't think that baby's with a canule could ever drink out of a bottle, because of the irritation it would cause to his throat. Once again Noah proves them wrong and now has at least 3 bottles a day and more if he's awake for them. In total he has 70 ml. of mummy's milk 7 times a day and he now sleeps through the night. It's great that he can drink from a bottle because the sucking motion helps develop all the muscles he will need in order to talk later on.





Both Thijs and I have been able to give Noah a bath and it's great fun for all of us. We both found it a little bit scary because of all the tubes, but if Noah can put up with it, so can we. He vigorously kicks his legs and waves his arms about, absolutely loving the sense of freedom.





He also likes the sensation of the warm water being poured over his belly, it's fantastic to be able to interact with him like this.

Offcourse he needs toweling off afterwards. (Notice the tigger)

The main thing you notice when he's in his bath is his belly. Although his tummy is still swollen, it's quite supple and not hard anymore, it doesn't seem to be causing him any discomfort. The doctors are giving his little body some time to settle down, and hopefully over time we will see that his body will adapt and re-absorb this excess fluid. They say that because his body was under so much pressure, and some systems didn't get to do their normal function in the womb we should just let his body take the time it needs to find it's natural balance, as medical intervention should be the last resort. Both Thijs and I agree that this sounds like the best way, but of course Noah is being closely monitored to make sure that he is not in any discomfort or that his condition doesn't deteriorate.

Here Noah's assistant is showing how comfortable he can sleep with his belly.

Another improvement is with his turned in foot, it seems to be a lot more relaxed and you can see that it's a lot straighter than when he was born. He does tend to turn it in when he's sleeping or when you play with it. He now has a physiotherapist assigned to help him move and strengthen his foot so that it can straighten up.
The main concern and the most important is the lungs. It's difficult to say how they are developing. We probably won't know until nearer the 6 months time. He is able to breath for himself for an hour three times a day. This does tire him out but at least he can do it. We notice that he doesn't rely so heavily on the machine to breath for him as much as he used to, but this is more of a feeling that what we're told. The doctors tell us that time and this hour exercise off the machine will help with strengthening Noah's lungs. With all the miraculous things that have happened for Noah, we're both very optimistic that he will surprise us all with this last thing.

The great thing with him being in Sophia is that we get to interact a lot more with him. It's really great to be able to change his pampers and give him a bath or his bottle. I almost feel like a real mum, especially now that I've been Christened by Noah. I've been thrown up on, peed on and covered in pooh - so the full trinity! Last week we bought him a bouncy chair (wipstoeltje) and the nurses helped us put him in it. He LOVES it! He was fascinated by the hanging toys and couldn't take his eyes of the hanging mirror. He's able to turn his head now to look at things and his hands try to grab things too, he's not too co-ordinated but he's getting the hang of it. The nurse thinks he's getting ready to do his first real smile any day now - that will be something really special to see.

Another special occasion: First time on grandmothers/Oma's lap.

We're off to visit Noah now, so we'll post some lovely photo's later. Thijs: Done!

Now stop taking pictures of me and let me sleep!

Long time between posts

Hi everyone.


It has been a while since our last update. Offcourse lots has happened in the mean time, but also lots has stayed the same. Lets start with some news about the most important one on this blog, Noah.


He is growing stronger, although not as fast as the doctors want, so he will be given some extra fats, sugars and proteines in his milk. This is still mothers milk, for all the important antibodies, and natural goodness. Noah is awake very often when we visit, and is trying to copy the strange faces his mum makes for him. He is not yet grabbing anything, but he waves and kicks a lot.
He also drinks a full bottle now, three times a day. We have been told by the doctor that this is very rare among babies with a canule, because the canule restricts movement in the throat area, and may irritate as well. Unfortunately he doesn't seem to like the milk with additives, but we can give him some normal milk from the bottle. (as shown here by his adorable assistant, Louise)





Also he now has a bath in the morning, unfortunately we haven't been able to do that for him yet. We have a picture, but only a hardcopy, so we can't show you yet. We will go and visit in the morning next week, so we can give him his bath. He is really enjoying it, and kicking around with his legs to make big splashes.



Noah has had quite a few visitors already, and lots of presenst as well. All the grandparents, his Aunt Anneke, Bas en Marloes, Maarten O.L., Wendy and Sam have all been and visited. He is even starting to recieve his own mail! (Thank you Ivo :-) ) . Just a quick word of advice for anyone who wants to give him a present. Please don't give him any clothing, because he has too much already.


There were special visitors last wednesday, the first team of soccerclub Feyenoord, who presented him with a shirt signed by all the team members, and some other goodies. The shirt is a size XL, so it could be a while before he can wear it. Here is Ron Vlaar (I had never heard of him before wednesday, but he was captain in the dutch under 21 team ) presenting the jersey.

Also last wednesday we were introduced to the doctor who is going to be incharge of the overall treatment of Noah. He seems to be a very nice man, and gave us an overview of what they know and what we can expect for now. We will meet every week, but big medical news will wait for a few weeks untill the throat specialist is back from his holidays. Their is no hurry anyway, as the throat reconstruction surgey will have to wait till he is a lot bigger.

We are also doing good, especially considering the circumstances. Louise is getting better, and her wound has healed completely (well, as far as we can see on the outside offcourse). She still tires quickly (well, quicker then before her pregnancy) but that is also getting better every day.

I am doing good, I reduced my work hours to be able to spend more time with Noah, and still get my sleep. This seems to be working well, esp. since Anneke and my parents have volunteered to take Louise to the hospital, which also allows me (and offcourse Louise) to spend more time with Noah.

Last but not least, Lilo is being spoiled by Louise's dad, and goes to the beach almost every day.

Well, I guess that is it untill we get some more pictures.

Thijs

How am I doing?

Hi everyone,


Just a quick update from me, Noah, to tell you how I am doing.
I'll tell you a bit about my average day.

I get fed every three hours with milk, for a total of 8 meals a day. Most of my milk goes through a tube straight into my tummy, but three times a day I get my milk in a bottle. I don't finish the bottle yet, but I am getting better at it.
First thing in the morning is a good wash, and a new outfit. Around 10 in the morning the doctors come by to see how I am doing, and do their thing. I am not very fond of that, but it is not that bad. Sometimes they need a drop of blood, or a x-ray or echo scan, but mostly they just do a check of how I look. I get visits from a professor in genetics, the throat specialist, the childcare specialist, the belly specialist, a plastic surgeon, the doctor in charge of the intensive care, his assistants, and sometimes some students as well. I must have forgotten a few more or slept through their visits, but I'll try to remember for the next time. Luckily they don't come all at the same time!
After their visit I often get physiotherapy for my lungs and chest. This releases a lot of slime from my lungs, and helps me breathe easier. During the day I sometimes need slime suctioning out my tube, because it is very difficult to cough through the tube. After my physio I get an hour of breathing on my own, with the machine on stand-by. This is very exhausting, so I usually have a nap afterwards.
Later in the morning a special nurse comes by to sit me on her lap, and play with me for a little bit. She is a pediatric specialist and will help me develop, although I think she just enjoys it. She said I was completely normal, and I am happy to get an extra cuddle.
In the afternoon my Mum and/or Dad come by for a long visit. I always try to be awake for that, but with all my other activities sometimes I will fall back asleep. They will also give me a bottle of milk, when they are there during feeding time (hospital is a bit like a zoo, they even have a giraffe here, although I suspect it is a painted X-ray machine).
Anyway I get to sit on their lap, which is very nice and they read me a few stories, and talk to me in general. After their visit I always need another nap.
In the evening it is time for another hour of breathing on my own, without the machine. They try to make me exercise my lungs three times a day. Then a good solid nap, only to be woken up for more milk, and nappy changes. If I am awake at some point during the night, they will give me another bottle, and my last lung excercise, other wise I get that early in the morning.

A little bit about my surroundings, and machines. I have a normal childrens bed now, and have my own stuff around me. I have a few toys in my bed, and my own blanket to make it all look a bit more colorfull. They have taken all the needles out of me, and I now have only my breathing machine and some sensors, to measure my breathing frequency, my heartrate and the oxygen level in my blood.

So that is my busy schedule, I hope you understand that I can't always be awake if you come and visit. I am off for another nap,

Noah.