Hi everyone,
Below are a few pictures that Anneke took of Noah. As you can see he is closely monitored.
He and Louise are doing very well. Noah’s ventilation is slowly being reduced, which is a very good sign.
Louise is already able to get out of bed for a few minutes, which is also a very good this quickly after major surgery. She doesn’t want to get out of bed, as she is enjoying the princess treatment she is getting right now. She doesn’t even have to get out of bed for a bath.
We expect Louise to be here till Wednesday, but I will be going to The Hague tomorrow or Sunday to check if the house is still there. Back to Leuven quickly off course to be with Noah.
For visitors: Noah can be visited only with the parents, between 15.30 and 16.30, or between 19.00 and 20.00. Visits have to be short and you are not allowed to touch anything (including Noah). Only two visitors are allowed at a time.
So please call us if you wish to visit, and we can make sure all is arranged.
Thank you for all your calls, visits, mail and comments.
skip to main |
skip to sidebar
About us
Hi,
We are the Drostens:
Louise Drosten-Bazzard: My wife, and co-author.
Thijs Drosten: Me, the one that does most of the writing for now.
Noah Aleidus Glyndwr Drosten: Our son, born on the 9th of july, 2008. He is suffering from a very rare thing called CHAOS, congenital high airway obstruction syndrome. Most of this blog is about him as he is the focus of our lives. He has had a very special birthing procedure, called EXIT, and he will have to live with a little tube in his neck to breathe through. He also has a PDD/NOS diagnosis, he is on the autism spectrum.
Daisy Ohana : Our dog and source of fun. (Ohana means family!)
We are the Drostens:
Louise Drosten-Bazzard: My wife, and co-author.
Thijs Drosten: Me, the one that does most of the writing for now.
Noah Aleidus Glyndwr Drosten: Our son, born on the 9th of july, 2008. He is suffering from a very rare thing called CHAOS, congenital high airway obstruction syndrome. Most of this blog is about him as he is the focus of our lives. He has had a very special birthing procedure, called EXIT, and he will have to live with a little tube in his neck to breathe through. He also has a PDD/NOS diagnosis, he is on the autism spectrum.
Daisy Ohana : Our dog and source of fun. (Ohana means family!)
Call to all CHAOS parents
Hi parents.
We would like to get into contact with other parents with a CHAOS child. Particularly if you are in Europe. We are active on facebook, where we have a chat group of 15 parents with children that have CHAOS. Please leave a comment and we'll get in touch.
Check this post for more information
Thank you very much!
Here are the other CHAOS children and for some, their webpages:
Tommy (Carepages, registration required)
Kalmin (Carepages, registration required)
Grant (Carepages, registration required)
Faith-Ann
Matheus
Pedro
Coby (Caringbridge, registration required)
We would like to get into contact with other parents with a CHAOS child. Particularly if you are in Europe. We are active on facebook, where we have a chat group of 15 parents with children that have CHAOS. Please leave a comment and we'll get in touch.
Check this post for more information
Thank you very much!
Here are the other CHAOS children and for some, their webpages:
Tommy (Carepages, registration required)
Kalmin (Carepages, registration required)
Grant (Carepages, registration required)
Faith-Ann
Matheus
Pedro
Coby (Caringbridge, registration required)
Medical Terms
CHAOS - Congenital High Airway Obstruction Syndrome. Basically a blockage in the top of the airway of an unborn baby. Since the lungs make a lot of fluid in unborn babies this leads to swelling of the lungs, fluid retention in the baby's body and other side effects. See also: http://www.fetalcarecenter.org/assets/0/190/5081/5091/bae6f17d-8bf0-4554-ad2a-dd4fb5e0fb73.pdf
EXIT - Ex-Utero Intrapartum Treatment.
A very special type of caesarian (keizersnee) where the baby uses mommy for life support while half born. This allows the doctors to operate on him, and make sure he can breathe properly before the umbilical cord (navel streng) is cut. To make sure the mother does not go into labour, this is done under full general anesthesia (knocked out completely). Also special medication will prevent breaking down of the placenta.
See also: http://www.fetalcarecenter.org/fetal-surgery/surgical-procedures/exit.htm
Tracheostomy - A hole in the airway, usually located below the larynx (voice box, stembanden).
This hole is used to put in a small plastic tube, through which he can breathe. This tube will need very close monitoring in babies, as it can easily get blocked. Also it will prevent the baby from making noises as no air flow past the vocal cords.
For Dutch information, check: vrienden van kinderen met een tracheacanule. Especially the page 'Tips voor familie en vrienden' offcourse :-) .
Probable Causes: A genetic error on chromosome 12Q. This happened when Noah's first cells where dividing, as only a part of his cells have this error. The genes involved are 3, 5 and..... more info to be added later.
EXIT - Ex-Utero Intrapartum Treatment.
A very special type of caesarian (keizersnee) where the baby uses mommy for life support while half born. This allows the doctors to operate on him, and make sure he can breathe properly before the umbilical cord (navel streng) is cut. To make sure the mother does not go into labour, this is done under full general anesthesia (knocked out completely). Also special medication will prevent breaking down of the placenta.
See also: http://www.fetalcarecenter.org/fetal-surgery/surgical-procedures/exit.htm
Tracheostomy - A hole in the airway, usually located below the larynx (voice box, stembanden).
This hole is used to put in a small plastic tube, through which he can breathe. This tube will need very close monitoring in babies, as it can easily get blocked. Also it will prevent the baby from making noises as no air flow past the vocal cords.
For Dutch information, check: vrienden van kinderen met een tracheacanule. Especially the page 'Tips voor familie en vrienden' offcourse :-) .
Probable Causes: A genetic error on chromosome 12Q. This happened when Noah's first cells where dividing, as only a part of his cells have this error. The genes involved are 3, 5 and..... more info to be added later.
Followers
Contributors
Visitors
4 comments:
Great to see the first pictures of the wee man :-)).Very happy to hear that both Louise and Noah are doing really well.
Best wishes Lorraine and Davie.
I may be biased - but I think Noah is the best looking wee lad EVER!! :)
Proud Mum
Yes indeed,it is the best Belgian wee man,
We've got the best Dutch one
proud daddy
Hi Tom,
Well if Ties is any example, I'm sure that Gijs is a very handsome little chap indeed :)
L & T
Post a Comment