Our usual doctor is away at the moment, but because of all the excitement we've had an update with another doctor. Noah has had a lot of tests done and all the results are back. As usual with Noah, he is perfectly healthy - after his own fashion! So there is no obvious cause for all these incidents.
The ENT (KNO) doctor alongside a lung specialist doctor will perform an exploratory operation on Noah on Tuesday to see if there is any irritation in his airway or lungs.
Together with the nurses we have established ways to keep Noah comfortable. I believe this is helping in keeping the number of incidents down. Only one last night and one during the morning. In between Noah has been able to relax and he has even had a little play time.
It's all a bit nerve wracking, the fact that incidents can happen so quickly, but I'm so glad I'm here close to him. It really feels so much more like we're family. Well I'm off to cook dinner now, so this is a short entry. As always, please keep Noah in your thoughts and prayers and we hope to see him fully recovered and back to his happy self again soon.
Love to you all from Rotterdam.
Thursday, October 30, 2008
Monday, October 27, 2008
Update from the Ronald McDonald House, Rotterdam.
Noah had a few episodes that required the nurses to breath for him, but everyone saw a difference in him by the end of the day. He really takes comfort from us being here and that makes it all worthwhile.
Today Noah had an echo on his heart but we won't know the results until after the doctors have compared it with previous echos. His belly is very distended and hard, he received water medication in the hope that he can urinate a lot of the excess away but for now this symptom remains under high observation. Noah also received some medication for his lungs to help him shake loose some of the phlegm and this did seem to make a difference. Tomorrow another echo will be done to look at the fluid in his belly.
The Ronald McDonald house is thankfully very comfortable and of a very high standard. We were able to cook a meal and make sandwiches for tomorrow, which helps us to feel a little bit more normal in this situation. It's wonderful that such facilities are available for parents.
It's been a very long day - we left Noah trying to fight sleep by boxing his mobile animals. His eyes were rolling around in his head so I'm sure as soon as we were out the door he was busy counting sheep - now it's time for Thijs and I to do the same!
The Drostens
UPDATE - 27Oct midday
Noah had a restful night, only one episode which is an improvement on the previous night. I was able to get in early to see Noah this morning since I'm so lovely and close by in the Ronald McDonald House. His little face showed how surprised he was and then lit up with a big grin. My heart melted.
I took care of him instead of the nurse, which was great. He had a restful bed wash, (putting in his bath would take up too much of his valuable energy at this time), which I followed with changing his cannule band. This he didn't like at all. I think he's a bit hyper sensitive because of all the people that have been prodding and poking at him these last few days, so he got very upset and had an episode. However, he didn't need medication to calm down, so that is also an improvement.
Once he was dressed he lay in my arms and drank 80ml of his milk, only needing to take 20ml via his food tube (sonder). He had a little play with his baby gym, taking his frustration out by whacking all the toys! I left him sleeping peacefully. I'm also off for a little nap, (it was a long night!) and I'll go back in time to express some milk for his afternoon feed around 3pm. It's too early to say for sure, but Thijs and I are hopeful that he's turning the corner. The doctors are still investigating the cause, no results back yet.
Louise
Today Noah had an echo on his heart but we won't know the results until after the doctors have compared it with previous echos. His belly is very distended and hard, he received water medication in the hope that he can urinate a lot of the excess away but for now this symptom remains under high observation. Noah also received some medication for his lungs to help him shake loose some of the phlegm and this did seem to make a difference. Tomorrow another echo will be done to look at the fluid in his belly.
The Ronald McDonald house is thankfully very comfortable and of a very high standard. We were able to cook a meal and make sandwiches for tomorrow, which helps us to feel a little bit more normal in this situation. It's wonderful that such facilities are available for parents.
It's been a very long day - we left Noah trying to fight sleep by boxing his mobile animals. His eyes were rolling around in his head so I'm sure as soon as we were out the door he was busy counting sheep - now it's time for Thijs and I to do the same!
The Drostens
UPDATE - 27Oct midday
Noah had a restful night, only one episode which is an improvement on the previous night. I was able to get in early to see Noah this morning since I'm so lovely and close by in the Ronald McDonald House. His little face showed how surprised he was and then lit up with a big grin. My heart melted.
I took care of him instead of the nurse, which was great. He had a restful bed wash, (putting in his bath would take up too much of his valuable energy at this time), which I followed with changing his cannule band. This he didn't like at all. I think he's a bit hyper sensitive because of all the people that have been prodding and poking at him these last few days, so he got very upset and had an episode. However, he didn't need medication to calm down, so that is also an improvement.
Once he was dressed he lay in my arms and drank 80ml of his milk, only needing to take 20ml via his food tube (sonder). He had a little play with his baby gym, taking his frustration out by whacking all the toys! I left him sleeping peacefully. I'm also off for a little nap, (it was a long night!) and I'll go back in time to express some milk for his afternoon feed around 3pm. It's too early to say for sure, but Thijs and I are hopeful that he's turning the corner. The doctors are still investigating the cause, no results back yet.
Louise
Sunday, October 26, 2008
Mini Update
Noah hasn't had an easy last few days. He's been experiencing episodes where he gets so stressed he forgets to breath and the nurses have to intervene and take over from the machine in order to get Noah breathing again. The cycle starts with a stomach cramp (which Noah normally suffers from due to excessive wind, which is a side affect of the cannula). It is thought that he contracts his stomach muscles which in turn constricts the fluid in his body cavity, pulling it all up to his lungs making it painful and difficult to breath. Noah has an infuse inserted in order to administrate a relaxant when he has one of his episodes. This is to try and break the cycle of contraction, pain and panic.
The true underlying cause is unknown and so the doctors are investigating. On Thursday a spot opened up and so Noah was able to get an MRI done, they took a picture of his lungs and body cavity (where all the fluid is gathered). We won't know the results for a while as there are specialists that need to interpret the image. We're hoping things will pick up a pace on Monday when the usual amount of doctors are available in the hospital.
This is all quite upsetting for Noah and for us and so we've decided to stay closer to Noah in the Ronald McDonald house near the hospital in Rotterdam. So we will only be available at limited times via our mobile phones. Lilo is off to her dog hotel at Marijkes where she will be spoiled rotten by Marijke and her daughters.
We will of course update the blog with any news as soon as we are able to. Please, once again, keep Noah in your prayers and thoughts.
Thanks all,
The Drostens.
The true underlying cause is unknown and so the doctors are investigating. On Thursday a spot opened up and so Noah was able to get an MRI done, they took a picture of his lungs and body cavity (where all the fluid is gathered). We won't know the results for a while as there are specialists that need to interpret the image. We're hoping things will pick up a pace on Monday when the usual amount of doctors are available in the hospital.
This is all quite upsetting for Noah and for us and so we've decided to stay closer to Noah in the Ronald McDonald house near the hospital in Rotterdam. So we will only be available at limited times via our mobile phones. Lilo is off to her dog hotel at Marijkes where she will be spoiled rotten by Marijke and her daughters.
We will of course update the blog with any news as soon as we are able to. Please, once again, keep Noah in your prayers and thoughts.
Thanks all,
The Drostens.
Monday, October 20, 2008
VIDEO - May take a while to load
Just some experiments. let us know if you like 'm!
Bath Time
Boxing with the wild animals
Watch my Billy Idol Impression
Surprise! You're on Camera!
Well, as we said: Hope you enjoy and don't forget to check out the other post!
Thijs
Bath Time
Boxing with the wild animals
Watch my Billy Idol Impression
Surprise! You're on Camera!
Well, as we said: Hope you enjoy and don't forget to check out the other post!
Thijs
Catching up!
Wow! The time has just flown by - well, that's our excuse and we're sticking to it.
Wales was pretty good. We got some well needed sleep, did some shopping and .... well that was pretty much it really! Our only real touristy thing was the view from the back garden:
We missed Noah very much, but we miss him every day, the only difference in Wales was that we didn't get to visit him in the hospital. Luckily for us his Auntie Anneke called us every evening to give us all the latest updates. His oma and opa were also visiting him and so Noah had 3 people to amuse, bathe and feed him - he was a very happy little boy.
Towards the end of that week he had some diarrhea which really knocked his system out of whack. As represented here by the (it seemed always and forever) sleeping Noah.
He had been doing so well. He was breathing for himself 18 hours a day but needed to go back to 8 hours a day because his system was so tired. He also started to gain more fluid in his body cavity which is also tiring for him. This situation hadn't changed until this Saturday. Thijs and I have been quite concerned for little Noah, but it was so very weird because although he was sleeping very deeply, when he was awake he was really happy and very interactive, which you wouldn't expect from a baby that was supposedly quite ill according to his machines. Look at him here doing a good Rocky impression, including an 'Adriaaaan'
The riddle was solved on Saturday when we walked in to find one nurse busy helping Noah breath manually while another was swapping his usual computer and breathing apparatus for a new set. All of his tubes were cleaned and replaced and 'lo and behold' everything started looking better for Noah. His continued lack of progress was diagnosed as hardware malfunction - there was a leak in the machine which caused a malfunction in the recording done by the computer! HUGE relief.
Noah is now able to breath for himself for 9 hours a day. He has a slight cold and so suffers with a lot of mucus blockages so the nurses are keeping his breathing practice low until he gets over the cold. However he is growing to be a little fat man! He is now a very wonderful 6225grams and the latest measurement taken at the beginning of the month was 58cm in length. He's now up to 100ml of milk seven times a day instead of 85ml. Way to go Noah!
As you can see here, not only fat, also greedy. No need for mum or dad to hold the bottle anymore!
Thijs is now working in Ede on a new project which he finds pretty cool as it's a new environment and the position offers some new challenges, which is always good. It's quite a commute though, but he starts very early and this allows him to leave early to get to Rotterdam for an afternoon visit with Noah. It's very tiring for him.
I get to bath Noah everyday now because I'm in so early. See here in the bath, drying off and all dressed!
I'm a little stress bunny at the moment. The relentless pressure is getting to me. I find myself able to function day to day, but it's hard. Sometimes it's all a bit too much and then a good cry or a mad rant to one of my friends is needed. That usually helps a bit. So many things are difficult but I thing that's the most frustrating is the lack of privacy with Noah and the lack of power to be able to change anything about the situation. My mind knows that time will heal everything, but for now it's just a case of gritting teeth and getting on with things. Thank God for Thijs and thank God we have each other and such good family and friends that we can turn too.
We're both trying to stick to a schedule in order to bring some order to what feels like a chaotic situation. I've got an appointment scheduled with the family doctor and the work doctor in order to see what can be done to help us in this situation. We're both realising that in order to be there for Noah we also have to take care of ourselves a little bit too.
I'm going to go into work on Wednesday and finally take in the traditional "bischuit met musijes" to celebrate the birth of Noah with my colleagues and I'm really looking forward to that. Apart from developing schedules and visiting Noah we've also been busy taking more photo's and even taking a few videos. So we promise to post them soon.
Speak to you soon!
The Drostens.
Wales was pretty good. We got some well needed sleep, did some shopping and .... well that was pretty much it really! Our only real touristy thing was the view from the back garden:
We missed Noah very much, but we miss him every day, the only difference in Wales was that we didn't get to visit him in the hospital. Luckily for us his Auntie Anneke called us every evening to give us all the latest updates. His oma and opa were also visiting him and so Noah had 3 people to amuse, bathe and feed him - he was a very happy little boy.
Towards the end of that week he had some diarrhea which really knocked his system out of whack. As represented here by the (it seemed always and forever) sleeping Noah.
He had been doing so well. He was breathing for himself 18 hours a day but needed to go back to 8 hours a day because his system was so tired. He also started to gain more fluid in his body cavity which is also tiring for him. This situation hadn't changed until this Saturday. Thijs and I have been quite concerned for little Noah, but it was so very weird because although he was sleeping very deeply, when he was awake he was really happy and very interactive, which you wouldn't expect from a baby that was supposedly quite ill according to his machines. Look at him here doing a good Rocky impression, including an 'Adriaaaan'
The riddle was solved on Saturday when we walked in to find one nurse busy helping Noah breath manually while another was swapping his usual computer and breathing apparatus for a new set. All of his tubes were cleaned and replaced and 'lo and behold' everything started looking better for Noah. His continued lack of progress was diagnosed as hardware malfunction - there was a leak in the machine which caused a malfunction in the recording done by the computer! HUGE relief.
Noah is now able to breath for himself for 9 hours a day. He has a slight cold and so suffers with a lot of mucus blockages so the nurses are keeping his breathing practice low until he gets over the cold. However he is growing to be a little fat man! He is now a very wonderful 6225grams and the latest measurement taken at the beginning of the month was 58cm in length. He's now up to 100ml of milk seven times a day instead of 85ml. Way to go Noah!
As you can see here, not only fat, also greedy. No need for mum or dad to hold the bottle anymore!
Thijs is now working in Ede on a new project which he finds pretty cool as it's a new environment and the position offers some new challenges, which is always good. It's quite a commute though, but he starts very early and this allows him to leave early to get to Rotterdam for an afternoon visit with Noah. It's very tiring for him.
I get to bath Noah everyday now because I'm in so early. See here in the bath, drying off and all dressed!
I'm a little stress bunny at the moment. The relentless pressure is getting to me. I find myself able to function day to day, but it's hard. Sometimes it's all a bit too much and then a good cry or a mad rant to one of my friends is needed. That usually helps a bit. So many things are difficult but I thing that's the most frustrating is the lack of privacy with Noah and the lack of power to be able to change anything about the situation. My mind knows that time will heal everything, but for now it's just a case of gritting teeth and getting on with things. Thank God for Thijs and thank God we have each other and such good family and friends that we can turn too.
We're both trying to stick to a schedule in order to bring some order to what feels like a chaotic situation. I've got an appointment scheduled with the family doctor and the work doctor in order to see what can be done to help us in this situation. We're both realising that in order to be there for Noah we also have to take care of ourselves a little bit too.
I'm going to go into work on Wednesday and finally take in the traditional "bischuit met musijes" to celebrate the birth of Noah with my colleagues and I'm really looking forward to that. Apart from developing schedules and visiting Noah we've also been busy taking more photo's and even taking a few videos. So we promise to post them soon.
Speak to you soon!
The Drostens.
Silence is Golden.
Translation:
Fokke & Sukke Don't talk to anyone anymore.
People who don't read our blog, we so don't talk to them
And people who do read our blog, well they know everything already!
Translation:Fokke & Sukke Join every internet trend
"Quit web blogging" ... that's the latest thing!
Ha! You don't have to tell us that twice!
Wednesday, October 1, 2008
A few photo's to tide you all over while we're gone!
Since Noah has grown he can wear a lot more of his clothes. He's turning into a regular fashion model. All the nurses comment on how handsome he is, and how fat! When he's on our laps, we sit him up for a little while because loves looking around the room.
He is trying to take up Thijs' former bad habit of sucking his thumb, but mostly he ends up putting his fingers in his eyes or whacking his head!
His other trick is sticking his tongue out.
We just love being able to bathe him ourselves now, and Noah just loves kicking his feet about in the bath.
His favourite toys get hit and grabbed, mostly this is by accident but we see that he's getting more and more coordinated.
Our Handsome Boy!
He is trying to take up Thijs' former bad habit of sucking his thumb, but mostly he ends up putting his fingers in his eyes or whacking his head!
His other trick is sticking his tongue out.
We just love being able to bathe him ourselves now, and Noah just loves kicking his feet about in the bath.
His favourite toys get hit and grabbed, mostly this is by accident but we see that he's getting more and more coordinated.
Our Handsome Boy!
It's been a while!
It's been a busy time in the Drosten family. Thijs has been working very hard due to his project coming to an end. Lots of items getting last minute changes that needing completing before the end of September. On Monday Thijs took in lots of Irish Tea cake, which I'm told his colleagues enjoyed, and said goodbye to the Goudse. For now he has some free time but there is a new contract looming on the horizon so he'll be kept busy till the end of the year!
Noah is doing great. He's grown to a whopping 5400 grm and now fits into size 62cm clothes (which is a little bit to do with his belly, but he's also grown in length).
I've been kept busy by visiting Noah every day. The journey back and forth to Rotterdam is quite easy, it just takes up a lot of time, and of course there are the days when you just seem to miss every connection by inches! I love spending time with Noah, but it was all quite stressful for a while. It all boiled down to communication.
Noah was having a lot of investigative work done on his belly. Every day someone would turn up and look at him and give some scary diagnosis then later on I'd be told that it wasn't anything serious. While all this was going on Noah also started suffering from painful stomach cramps and was in considerable pain. I didn't know what was going on with his health or how to help him when he was in pain. The nurses are very efficient but it left Thijs and I feeling left out and unable to care for our child. We decided to have a talk with our doctor and nurse to see how we could change all this.
The most important thing to us is Noah's care and his condition, which is always fantastic, but we wanted to see if we could do more ourselves with the care of our son. We are so happy we did this. We've now spent the last week putting him in and out of his bed, putting him in his bath and learning how the nurses take care of his canule. We're able to put him on our laps, and it all feels just fantastic to do this ourselves and not have to wait for others to do it for us. We're scheduled to learn how to take care of his food intubator (sonde) and to give him his medicines. So finally we're more involved in his day to day schedule and Noah seems to love it too.
We had some wonderful news from our friends Paul and Wendy, their son Frank couldn't wait any longer and decided to join their family 6 weeks early. So a big Hi to Frank, and we all hope he'll be home soon.
Thijs, Lilo and I are off to Wales today to visit my dad, see some mountains and do some shopping. Hopefully there will be time for sleep as well, but I'm almost resigned to seeing grey under Thijs' and my eyes until Noah is 21!!
Bye for now and we'll blog when we're back from Wales.
xxxx The Drosten juniors
Noah is doing great. He's grown to a whopping 5400 grm and now fits into size 62cm clothes (which is a little bit to do with his belly, but he's also grown in length).
I've been kept busy by visiting Noah every day. The journey back and forth to Rotterdam is quite easy, it just takes up a lot of time, and of course there are the days when you just seem to miss every connection by inches! I love spending time with Noah, but it was all quite stressful for a while. It all boiled down to communication.
Noah was having a lot of investigative work done on his belly. Every day someone would turn up and look at him and give some scary diagnosis then later on I'd be told that it wasn't anything serious. While all this was going on Noah also started suffering from painful stomach cramps and was in considerable pain. I didn't know what was going on with his health or how to help him when he was in pain. The nurses are very efficient but it left Thijs and I feeling left out and unable to care for our child. We decided to have a talk with our doctor and nurse to see how we could change all this.
The most important thing to us is Noah's care and his condition, which is always fantastic, but we wanted to see if we could do more ourselves with the care of our son. We are so happy we did this. We've now spent the last week putting him in and out of his bed, putting him in his bath and learning how the nurses take care of his canule. We're able to put him on our laps, and it all feels just fantastic to do this ourselves and not have to wait for others to do it for us. We're scheduled to learn how to take care of his food intubator (sonde) and to give him his medicines. So finally we're more involved in his day to day schedule and Noah seems to love it too.
We had some wonderful news from our friends Paul and Wendy, their son Frank couldn't wait any longer and decided to join their family 6 weeks early. So a big Hi to Frank, and we all hope he'll be home soon.
Thijs, Lilo and I are off to Wales today to visit my dad, see some mountains and do some shopping. Hopefully there will be time for sleep as well, but I'm almost resigned to seeing grey under Thijs' and my eyes until Noah is 21!!
Bye for now and we'll blog when we're back from Wales.
xxxx The Drosten juniors
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