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Waiting for the baby...

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I Know....it has taken too long!

Posted at 23:21, 4/12/2006

Dear friends, finally another word from me...
At the moment I'm very busy trying to get a job and I have to admit sometimes I even forget about the problems around Janneke, because she's doing soooo well.

Last month we've been to the hospital(s) again and they just couldn't believe that she's still completely "normal" (meaning no signs of any problems yet). And with the shots like DTP, she just cries for 5 min. and then "OK", ...its unbelievable. So for the time being, we just enjoy having her with us and she just does everything what a baby should do. This sometimes also the cause for people asking us "so...it's not as bad then?" A question that really starts to irritate - how well meant it might be, because this comes from the people that should know by know. And don't get me wrong, we really appreciate ALL reactions, but some can be too much.

If you look at the dutch site you'll see a picture of the ultra sonic that has been made 4 weeks ago. The 2 big dark holes are the ventricles and as you can see they're fairly big and if you then consider that the right one is already more than double the normal size, just look at the left one.

I've put 2 images in the photoalbum of this blog, to give you an impression of how big the problems are. Just look / compare the ultra sound and the MRI on which you can clearly make out the edges and the bleeding in the left ventricle, which is already way to big. If you look around the right ventricle, you'll see the cysts. A positive point is that it remains the same...no growth the down side of it is, that still nobody can tell us what to expect. But every day we pray that Janneke is going to be as strong as she's been untill now.

My forced time at home also has a positive side - I get to enjoy my daughter with a lot of new things...like the swiming we've done last week...really great, although it only takes about 10 min. but it is so sweet to see the smile on her face.

And if you look on the dutch site, you can find the foto shoot I got as a birthday present, from wife and daughter. There are a few Ann Geddes like pictures in there.
(You'll find it under "nieuwe foto's Janneke"/ "Foto shoot Janneke" - bottom)

This week is going to be an exiting week or at least I hope to get a confirmation/ job offer this week -  I have two  things going on...One in IR camera's who want to enter the truck market. The other is about emergency lights (strobe's etc.) for vehicles - both very interesting positions with good future. Well, we'll see....it is about time that I find something. I had so many interviews and expenses in different industries, but these two really suit me. Let's keep our fingers crossed!!!

Well guys it's late again and Janneke needs her last "feeding" (00:00) before we can go to bed.
I would love to read, see or speak to you'all again soon....please let me know if I can SKYPE you...makes, it easier.















Back from the Ardennes

Posted at 00:45, 22/10/2006

We came back from Stavelot/ Belgium yesterday evening, which was also a kind of adventure because Shamara (one of my little nieces) had a severe asthma attack. She already suffered from asthma but it was going well and she had medication. But on thursday night it really got bad; you could hear her breathing from 5m distance. The afternoon we've spend in Malmedy shopping (for baby clothes of course!). At around 22:00 when Shamara couldn't sleep and cried most of the time because of the pain and the puffs didn't help anymore Edward (my b.i.l.) decided to go to hospital in Malmedy. After the doctors said they wanted to keep Shamara there and Ed said he preferred to go back to Holland, to their own pediatrician, the doctors wanted to observe her for another hour and if everything stayed stable, they could go. But they would have to report to the Dutch hospital  immediately.  In that hour, Danielle and I packed  their stuff and car and then we went to hospital together (with Lyndsey, my other niece who had stayed with Daan and Janneke) to handover their shit, so they could leave instandly. Fortunately, Shamara's condition was stable and so they left for Hollannd around 01:00. We promised to take care of the appartment and arrange everything there, since they had planned to stay until monday.

We stayed an extra day and came home saturday after paying a visit to the town of Spa and a Factory Outlet where we bought...yes...baby clothes. Of course most of it in Pink and Daan had a few doubts about a skisuit we bought for our little princess, because...of course we don't know if she's going to make it untill Xmas.

But to get back to the situation of the last few weeks. After we've been to hospital in Tilburg, we tried to pick up the normal life and I had a few interviews. I tried, as good and as bad as it goes, to be prepared and sound positive....obviously it was not enough. Nearly everything went through headhunters and then coming to the companies, they were looking for people with other qualifications....why am I then invited? I have to drive through the country and spend money on travel, although I'm obviously not the perfect candidate. On top of that, I have a few problems with agencies here for my "dole", since a "specific form" was missing, that I had to request from Austria and Germany and am still waiting for the one from Germany, but nobody answers to questions...

But back to the story:

October 7, 2006
Our 1st wedding anniversary and Fleur's birthday.Went to Fleur, met with the relatives. Got some very nice presents for you know who again and we just tried to relax. Daan and I had planned to go for diner (the 3 of us) but we were so tired that after a light diner at Fleur, we went home and decided to do the diner for three a day later.

October 9, 2006
It has been a long time, since we really thought about us and we went to Tiglio a nice bar/restaurant in Oisterwijk to a restaurant where a cousin of Daan works. We could just put Janneke in her stroller next to the table and enjoy the steaks. For Daan it had been a very long time since she had one really, really rare. It was terrific to have a few hours for us again. The last few weeks/ months we had really "forgotten" about our relationship, because you just float along.
 
October 13, 2006
The first appointment in Utrecht again, with Prof. de Vries. Normally this appointment is to see the progress of the children who have needed special attention during birth, but we soon found out that for Janneke (or more for the doctors) it was more like a "surprise hour". We came in and met the physio therapist who had done the first tests in hospital, that all went great."She responds like a normal baby" and when we shook her hands, she just said that she was not the responsible therapist, a neurologist (ánd ph. therapist) would do the examination.But when de Vries asked her if she wanted to join in....she was really happy to do so. For us this just means that they are all interested in their jobs and well...one more or less...who cares.

I asked de Vries, what the purpose of this visit was and she just said: "we will observe your daughter" and as a matter of fact they put her on the floor on a mat and looked at her. But our little girl had a nice surprise. When the neurologist picked her up she noticed that our princess had a different odour than when she had put her down. She was covered untill her shoulders...and before the ultrasonice examination we needed to change her...which was nice!

Then they did some more tests on Janneke's reflexes (standard thing) and...
EVERYTHING PERFECT

So de Vries asked:
"Does she eat? - yes"
"Does she sleep well? - yes"
"Does she makes sounds? -  yes"
"Does she respond to sounds? - yes"
"Have you seen any unusual / spastic other things? - no"
Because I must say, that Janneke doesn't have those strange spastic reflexes in her legs anymore that she had while still being in hospital. And we haven't seen the blue mask around her mouth and nose again during feeding. She does have cold blue hands during, but according to de Vries this is normal....OK....if she says so.
"How is she reacting to physio therapy? - What physio therapy???" The (volunteering) therapist stated, that because of the results of the 1st examination, it wasn't necessary to prescribe therapy. Finally after this examination today everybody came to the same conclusion. You can't cure what functions normal...I wish this would always stay like this!!!

Finally the ultrasonic was done and then it puts reality back into your mind again...large black holes and missing brain tissue. The upside is, that it hasn't grown and that also the size of Janneke's head is normal for her body size...

Finally I asked de Vries to ask around in her international network to see if she could find "similar" cases. She'd already done that in the UK and single symptoms, yes, but a combination of all of them...NO! Actually de Vries said that of course the development of every child is so different (especially the brain), that even if she had "reference cases" the outcome could be different for all of them.

The neurologist confirmed that our little one appears to be a completely healthy baby and only on paper/ scans you can tell, that she has these severe neurological problems.

We made an appointment in 4 weeks, to see if somethings has changed. We are so very afraid of what the future will bring. How our little girl will develop. But Janneke is the only one who can do something about that.

Then we went through all departments, wanting to show our little princess, but only one of the known nurses was there. We'll do that next time again...

PS: I won't put anymore pictures on this blog, since space is restricted, but just look at the other website.

Sorry to keep you waiting

Posted at 22:03, 17/10/2006

Dear Friends,

Yesterday we celebrated Janneke's first birthday - one month. Daan and I agreed that we're celebrating 4 weeks, 6 months and then 1 year...milestones if Janneke makes them. But now it's so amazing to see how she's doing. And that for a baby of which even the doctors thought that she wouldn't survive delivery or the first day(s).

The last few weeks (after delivery) in "brief":
In Utrecht, after Janneke had changed the ICU for the Medium Care, we had the opportunity to take care of her and although the staff was there, they were happy to leave the daily care for Janneke to us. That gave us the chance of learning the daily routines withe the back up (if necessary) of the professionals. Another great thing was that if required, they took over the care, so we could have a few hours of sleep. ...which was nice...

Looking back, this "training period" proved to be very helpfull, since the care we received at home (normal in Holland and paid for by the insurance) was restricted to 12 hrs., which to my opinion wouldn't be enough if you come home unprepared.

And I can't repeat it enough, the nurses on ICU and MCU were fabulous. All of them who have personally taken care of our little princess, has written something in a note book - completely personlised stories with poems, drawings and so on, written for and to Janneke. I hope she will ever have the chance of reading it herself.

After all the mess and miscommunication we could finally take our little one home on monday September 25th, we were able to go home. And the intention was that if something would happen, it at least would happen at home. Therefore we also made an agreement with the doctors and our physician about offering "comfort" if necessary. Before we left the hospital, I also demanded a letter in which this was explained in case of we need assitance from other doctors. And as you'll understand, that if assitance is needed, I don't want to have to explain the situation or having a discussion with an over ambitious physician "who can save our baby". (In case we get the opportunity of spending Xmas and Nyear in Schladming, we'll also get this letter in different languages, and I'll personally inform some doctors I know in Schladming).

When we we came home we were welcomed by the family and there is a beautiful sign in the garden, made by Danielle's brother.

(This figure is "Janneke" of "Jip & Janneke" brother and sister in the stories of Annie M.G. Smidt a dutch author of children's books)

In Utrecht we also agreed to get in touch with a pediatrician in Tilburg, for the "normal problems" a kid can have, so in short: the body is treated in Tilburg and the head of Janneke in Utrecht.

2 Days after coming home we went to the Tweesteden hospital to the pediatrician Dr. van Lier, a very sweet guy. He knew most of the history and when I explained the doubts I had in having yet another doctor for Janneke, he agreed and said that he personally would take care of that he would be the only one in Tilburg for our girl. Also all vaccinations we can do in hospital instead of having to go to the health centre. He also told us that Prof de Vries is a very good friend of his...which could or should be an advantage in the communication between the hospitals. We briefly discussed the "comfort"matter and when Danielle started to cry, van Lier just stroke her arm and said "we all know the situation and let's not talk about this anymore, just enjoy your beautiful girl" - sweet guy! We agreed that Janneke will be "shown" around every 4 weeks in Tilburg just out of precaution.

Guys, this is it for today, yesterday I didnt get any sleep because our daughter is doing so well....the Seiko syndrom that every baby has. We're going to bed soon.

Tomorrow we'll probably go to the Ardennes to my sister Fleur, who stay there in a holiday home to have 1 or 2 relaxing days, but I promess to finalise the story before monday at the latest. For pictures you know where to look!)




New fotos on the other website

Posted at 18:47, 27/9/2006

Hi guys, I'm sorry I haven't written anything the last few days, but who has kids knows, that their rythme is going to be yours. There are new fotos on the other website and I'll try to let you know what has happened the last few days...asap.

 

Btw. Everething is well, Janneke enjoys being at home and so do we...Another hobby of her is to play "alarm clock" at 0300 and 0600. But I can tell ya that I am more than happy to get up...time is sooo precious.

OK cu soon


JANNEKE, MY PRINCESS IS BORN (September 18, 2006/ 12:52)

Posted at 10:15, 22/9/2006

Despite all worries and the uncertain future, our daughter Janneke was born as planned, on monday September 18, 2006 at 12:52. She started crying after just facing this world for one second....(no, she couldn't see me!) This was a surprise for us and as we learned afterwards also for quite a few doctors.

 

Everything went well and despite all prognoses about her size, at birth she was 3380 grams and 47cm long. (normal). But this doesn't change, what's wrong on the inside. And then you learn how cruel nature can be, a perfectly normal looking child/ a beautiful little girl, so severely damaged and so vulnerable.

 

I appologize for not updating the blog this week, but I know y'all understand and probably quite a few of you sneeked onto the website of Danielle where all pictures can be seen.

(www.everyoneweb.com/plomp  "nieuwe foto's" ), but I've just put some on this blog too.

(profile/photo album)

 

This late update of the blog has an up side to it: I can make shortcuts to the results and don't have to tell you the whole story. There's also a chance, you might not even believe that it is possible, at least when I read it back on the dutch site, it's all like fiction. I'll give you a few examples:

2006-09-18 / 12:52 - Janneke born - hurray!!!

2006-09-18 / 15:00 - "Janneke needs to get surgery this afternoon, to relief het brain" scheduled for approx. 17:00

2006-09-18 / 17:00 - Neuro surgion:" I'm not gonna operate on Janneke, since it might be useless and we might lenghten her suffering" / Do we get another MRI scan to compare with the one of 4 weeks ago? - "We'll arrange it"

2006-09-19 / 11:00 - "We don't need a MRI scan because it wont give us additional information to the daily ultra sonic".

2006-09-19 / 15:00 - Since Janneke has had some breathing problems (saturation), we need to tell the hospital, how far they need to help our daughter...(!?) - and although it all was clear in our minds that we don't want our little one to suffer, I just couldn't say it - it was like telling them to kill my daughter..I just couldn't say it!!!

2006-09-20 / 10:00 - A spot has come free for a MRI, Janneke will be braught there at noon

2006-09-20 / 17:00 - Prof Dr de Vries, a leading international expert on neurological deficiancies with childrens: " you're daughter is doing fine and if she keeps on eating like this, I don't see why she won't be good for a very, very long time"

 

It would take way too long to tell you what we've experienced exactly this week in this hospital. But different opinions of the doctors within the team or between the different disciplines didn't make the emotional situation easier for us. In the meantime, I now have seen nearly all heads of the different departments and told them what I think of their communication skills. A communications expert would kill for having a client like this! And we don't need this right now, we want to enjoy our little girl and be parents. They can have different opinions, based on their expertise or experience but we only need one! The team decision!

 

But to cut long story short:

 

Despite all the mess and all the miscommunication, the MRI clearly showed all the problems that we already knew about (left/right ventricles, cystes but also a lot more) I can't decripe it exactly since I don't have a medical dictionary here, but it is in the "large" brain, the "little" brain and the part that regulates the basic functions. This normally means that if the pressure in the brain increases, the resperation might stop .. or not! De Vries, in all her years has never seen so many problems with one child. (And that's why I wonder, how she the can tell that our little one will do so well!?)

 

However,  I can tell you that it is very frightening seeing your child more or less stop breathing...2 days ago I saw her o2 sats drop to 64% (>95% is normal) and she turned blue around the nose...this is what might happen any day.....but untill now, she always recovered by herself.

 

But Janneke, our little jewel is doing well and will accompany us home on monday.

 

The only reason for us still being here is, that we need to learn a few things, but more important, all organisational and medical appointments have to be made by the "professionals" before we can go home (hospital in Tilburg, our doctor, social worker, med. assistance for at home).

 

Janneke and Danielle, my princess and queen are doing really well. Daan is officialy released from hospital today. But has some problems with her scar...and hormones.

 

Ok so far for today, if you want to know more details, I might write them  down later or you can give us a call and I can tell you.

 

Thanx again for all the wishes......love ....................Janneke, Stephan and Daan

 


Tomorrow D-Day!

Posted at 14:46, 17/9/2006

Tomorrow is going to be the day! We have to be in the hospital at 09:00 and (normally) c-sections don't start untill 12;00. So waiting is going to be hell. I can tell you that it certainly is hell at the moment.

 

For me as a guy, it's already strange that I'm going to be a father tomorrow (on a set time), since I actually haven't felt the baby but the all the uncertainty makes it even more difficult. Do we have a baby or not? And if yes....for how long? Danielle is so afraid (at the m moment, she says: 'convinced') that our little girl won't survive for an hour; the hour that she will need to get "stitched up and recover". And of course I can say anything I want, but I also don't know what's going to happen.

 

Everybody is calling to wish us good luck although nobody knows... It is strange! And although I haven't done anything (Daan is doing all the carrying), I am tired and really scared for tomorrow. I'm afraid of what might happen to little one and Daan. We had a lot of messages that a c-section is not dangerous and everything will be fine, but when you look at our situation, the combination of complications (that even the hospital in Utrecht has never seen before "it happens in maybe 0,0001% of the cases), I don't know what to expect.

 

But we are definitely going to "celebrate", at last we're going to see our daughter.

We've bought a bottle of pink champagne (nice combination with Daan's valium) and we're going to eat "beschuit met roze muisjes". This last thing is a Dutch tradition: Dutch biscuit with hard sugared caraway seeds (pink seeds for girls and blue for the boys), auf Deutsch:  eine Art Zwieback mit harte Aniskugelchen.

 

 

What ever may happen, PLEASE CELEBRATE WITH US AND DRINK ONE FOR OUR DAUGHTER. 

 

Now we have to prepare everything for tomorrow, pack the suitcase for 3 and charge the camera, print labels for cards since we'll need them anyway and collect all telephone numbers of the people and organisations we need to call.

 

We will also try to keep everybody informed through the Blog and website, but who's going to do that I don't know. Probably Edward or maybe we'll do it.....I really can't say.

 

Everyone....please keep your fingers crossed between 12:00 and 15:00 (might be difficult to work, but what the hell...) and hope with us.

 

X Stephan

 

 

 

 


Our little girl is going to be born next week

Posted at 22:00, 12/9/2006

Today we had to go to the University Hospital in Utrecht to discuss all details for the delivery and the date. I noticed that Danielle started to be a bit more positive the last few days, hoping that the whole situation isn't that severe...everybody deals with disaster in a different way. But today when we had a little time to study her file, she was brought back to reality with a shock. When you read the whole list of complecations, you really wonder how long our little gil is going to life, if she survives the birth at all!

 

For Prof. Dr. Bruinse a very important thing is, that the lungs of our baby are matured, so in order to be sure, he wanted an amniotic puncture to be done......straight away! (I believe it was very good for Daan to be soo surprised because if she would have known this before, she would have worried about this also, on top of all the other things). They would probably need 24hrs for the results and if the lungs were OK, the c-section can be done on thursday or friday. If not, Danielle would have to have medication over the weekend and the delivery will be on monday. On our question, why the lungs should be matured, Bruinse answered honestly that if they're not, our girl needs to be artificial respirated; which, in the worst case, would mean an extension of the suffering. On the other hand the team will, of course, only stop treatment when they're absolutely sure that our little girl suffers. And therefor they need to do some examinations (like scans etc.), that can't be done when seh doesn't breaths by herself.

 

Daan and me decided that we wanted to have the c-section on monday anyhow, because Daan wants to have another few (sure) days with our baby. Bruinse said that for him we are the main objectives and how we're going to be in 6 months. So if we feel happy with another weekend, so be it! For the baby three days eather way doesn't matter.

So Monday, September 18, 2006 it is!!!

 

After this we went for the puncture, that was done by a South-African doctor. It only takes about 10 minutes and, according to Danielle, it doesn't hurt but is a very unpleasant feeling, since you feel exactly how they go through the skin, tissue and so on.

 

Then Daan went to give some blood and we met the anaesthesist to discuss the procedure on monday. Since everything is so critical, our baby immediately needs to go to the neonatology. But the whole procedure of getting her out and "stitching" Danielle up will take approx. little more that 30-40 min.. During that time the pedeatricians will work on our baby in a room directly next to the operating room. I will be able to go back and forth to give Daan the information. Daan then goes to recovery and I will go with the baby to the neonatology. I pray, that she will at least survive that Daan can hold her after she returns from recovery.

(This shouldn't take too long because she will have a local / spinal anaestetic).

 

Let's hope she lives u to her name (No, I'm not gonna tell you yet...) that means amongs other things "God has mercy" HOPEFULLY HE REALLY HAS....at least for a few hours or days.

 

I must say that now it's coming very close...and that frightens me. As long as she's in Daans womb, she's safe and now D-DAY comes. And the time, that we are really going to loose her... Danielle has the same feeling and especially we hate it that we probably will not be going home as a family...that's still unbelievable.(Btw. Daan needs to stay in Utrecht for approx. 5 days - so me too!)

 

In the meantime I also need to go to interviews. You can't let the interesting positions pass by, they might not come by again. But it's a crappy situation. The upside of it is that it gives me a bit of distraction. Tomorrow I will go to a company that manufacturer acrylic windows for campers and motor homes... we'll see!

 

 

 

 

 


Maybe next week? (Another conversation with another specialist) Sept.6,2006

Posted at 22:28, 8/9/2006

Sorry for all the people who were waiting for me to update this weblog, but in these troubled times I'm also looking for a job and yesterday and today I had to interviews and didn't have the energy coming home and write something. I must admit that these interviews are a kinda distractions from all problems and troubles we have with all doctors.

 

Wednesday morning we had a meeting with Prof. Dr. Bruinse, head of gynaecology of the university hospital Utrecht. We were accompanied by my cousin Ruud, as an "independant" listener. We were really anxious to hear what he had to say, since in between the meetings no examinations had been done, and to our opinion no additional information had become available. So at 10:45 we had the meeting with Bruinse...

 

In the beginning, we really had to get used to his manners and his way of explaining - very blunt, direct but, as we found out honest. The main thing for us was, that he is the "top honcho" and everything he says, goes! And that he can make arrangements and promeses that everyone has to keep!

 

He started of with the facts: Ventricles, no CC, bleedings in the head etc..... Then he (to our opinion) changed to everything they had told us the week before last. What means: they expect our little girl to survive the delivery and then the gravity of all the complications will show. But the main thing for the doctors is to have the baby out, to be able to examin her. On my question of how academically interesting "this case" is, he asssured  us that his team is only interested in the best 1. for Danielle and 2. for the baby.

 

He wanted to make very clear that although he wanted us to be more positive than we were, everything is one big questionmark!!! Nobody knows if the baby survives the cesarean (C-section for the Americans ), since they don't know if the brain can control all vital organs. But if it does, Utrecht is the right place to be, since there are a few things to consider:

a. If our girl lives, nobody knows how long. But in case of complications, Daan and she will have to be transported to Utrecht anyway.

b. In case of a critical decision, Utrecht will also do this in favour of the mother.

c. Our girl needs to have a humane life if not the "team" will discuss this with us and what steps to take.

d. We've seen this week, that Tilburg doesn't make a decision without consulting the university hospital. The delivery didn't take place because Utrecht didn't give their consent. So if we want doctors who really can make decisions, it has to be Utrecht.

 

Bruinse admitted that the communication hadn't been very good/ professional towards us, but he asked us to give 100% of the care to Utrecht so from now on, only one doctor/ hospital - him and Utrecht will have the responsibility.

 

So in the end of the day...we decided to approve with his proposal and that next tuesday we will have another meeting with him to set the date. I can also stay in the hospital (in the Ronald McDonald house) untill everything is clear.

 

Finally I (we) can't thank all of you enough, for the support you're giving us. It is nice to have tears of joy once in a while because so many people  write something in our guestbook or send a personal mail. Guys....thank you sooo much for this....it really get's us through this difficult period.

 


What do they want from us? Now it's week 37

Posted at 11:05, 4/9/2006

Today we were expecting the phonecall from Drogterop for the appointment with the pediatrician, and he did call but not for the expected appointment. We had made our mind to have the caeserian because we want to see our little girl alive, also when it's only for a few hours or days and told him this, before he could tell us the real reason for his call.

 

And the real reason was that Utrecht (univ. hospital) wants to see us again asap, because they believe the delivery and after care should take place there...why tf...is that? Last thursday they said goodbye and wished us well and now all of a sudden they change their minds again.

 

Drogtrop didn't know what to say to us, he's also very annoyed about the process in Utrecht. But obviously they told him that the doctors in the univ. hospital are better qualified and that Tilburg cannot give us the care we need. Maybe after reading the whole story you will understand that I can't anymore. I have the feeling that they kinda forget that they're dealing with people here. Drogtrop has the opinion that there are to many people ('specialists') involved.

 

Utrecht now told him that they want to get the baby with a caesarian in week 37 (next week). I really don't understand what they believe they can do??? The bleedings are still progressing and the head is therefore still growing and growing....so to my simple opinion, the chance of seeing our little girl alive, is deminishing by the minute.

 

We're back at the point of having the feeling that some people are very interested in having 'this case', in their hospital. - The situation and combination is unique and unversity hospitals are always very interested in that...But I can tell you one thing: OUR LITTLE GIRL IS NOT GOING TO BE A GUINEA PIG! (The first one who tries something in that direction, has to exise a few of his own instruments!!!)

 

So.....no baby this week. But we're going to listen to what they have to say...,we of course to collect as much information as we can, to make an informed decision. And a cousin of mine offered to accompany us to the meeting as an objective listener and we're going to do that to be sure that we don't miss anything, because you might understand that I'm really pissed of with those amateurs.

Normally you collect all information before you inform the client, here they obviously all specialists inform you at their own convenience.

And that then, if sombody else (in the same team) has a different opinion, they just have to inform us too.

 

One thing should be clear to them....they're not forcing us into anything and if they don't have very, very good reasons, (which I don't think they have...regarding the scans) the birth is going to take place in Tilburg!


All hope is gone...

Posted at 00:08, 2/9/2006

Today we went to Drogtrop to discuss the procedure for the coming weeks and to set a date for the delivery. It has been a hard conversation, in the way that we know what's going to happen and what to expect...and that's NOT good. He stated clearly that our little girl WILL NOT SURVIVE. And when she makes it through the delivery, it is more probable that we talk about days than weeks! And this was stated so clearly, that it shattered all positive thoughts we kept during all the negative diagnoses we received over the last few weeks. The whole thing was now about what would be the best for Danielle!

 

He told us, that we have three options for the delivery:

a. Let nature do its thing. Which means that it might take untill 40 or more weeks and since our little girl grows and grows, a caesarean will be necessary. Just the period it might take is unbearable for us and this option is out of the question.

b. Caesarean. This is not strainfull for the baby but carries a few risks for Danielle like trombosis and pulmonary embolism immediately in the period after delivery and all risks with a future pregnancy. (scar tissue and so on).

c. Natural birth. Good for Daan but very strainfull for the baby with a 'good' chance that she won't survive the procedure. Because of the strain and the severe damages her little brain already has.

 

THIS IS NOT THE THING YOU WANT TO DECIDE OR EVEN TALK ABOUT, WHEN YOU'RE WAITING FOR YOUR FIRST BORN!!!

 

Danielle prefers a natural birth, but of course now the doubts starts to arisise that this might mean that we won't see our daughter alive - that she will never see us alive.

 

A caesarean will prevent this, since it only takes about 3 minutes, but has all other set backs. 

 

Let nature do its thing......NO WAY...we can't put up with this stress and uncertainty any longer.

 

It it soo unfair that we have to make decisions that might even prevent the short life our little girl has. We are so looking forward to her and now we, more or less already have to say goodbye to her... even before she's born!!! We just want to enjoy being mum and dad and wash and take care of her, even when it's only for a few days!

 

 You can't believe how F***** ANGRY I AM!

 

After all this it seems best to induce the birth asap and since I have an interview for a job on monday and since I know these guys very well I'm going but wednesday is going to be the day! On tuesday we're probably going to have a meeting with a  pediatrician to make sure "all noses are pointing the same way" meaning that if our little girl suffers, nobody, will against our and the gynaecologists opinion, do something stupid like medicate her and try emergency rescues etc.

 

But everything will take place in Tilburg and since she's still in a breech the doctors first are going to try to turn her around and then....

 

 


Thanks for all your reaction

Posted at 00:01, 2/9/2006

In this time of pain and grieve, Danielle and I want to thank all of you for the very comforting words and wishes.

 

We are very gratefull for all messages, phonecalls and emails, every morning the first thing is look at our emails and the guestbook on www.everyoneweb.com/plomp to see who wrote us. We know it's hard but it means the world to us and it means a lot to us.

 

THANX,

LOVE DANIELLE & STEPHAN


A lot of (old) information, or is it?

Posted at 00:12, 1/9/2006

This morning we had to leave for Utrecht again, only 90 km from here, but in Holland that means 2 hrs. We were picked up by again another radiologist...nice guy. He started the examination befor Stoutenbeek was there and of cours we expressed our doubts about another ultrasonic and the benefit of this. We also said that this would be the last time before the delivery that we came to Utrecht. We noticed he really listened and cared, since he expressed our feelings and doubts when Stoutenbeek arrived.

 

The big question of today was: Is the unknown substance in the ventricle, blood or a tumor? According Stoutenbeek a tumor would mean no chance of survival and blood is "kind of better". Furthermore he suggested, it would be better from this moment on, that Utrecht will take over the care/ treatment, since that's where the specialists are, who can do everything for our child. When we stated that we don't want the doctors to safe our little baby at all cost, and leave us with a child not realizing and able to enjoy life, he reacted really agitated and ensured that they (Utrecht) are also only interested in a worthy life for our baby and otherwise would discuss a stop of treament with us. I told him that we based our remark on the facts given by the different doctors or at least the way we had interpreted them.

 

Since we didn't have a meeting with a neurologist before, we demanded to have a conversation with one of them to discuss the results of the MRI and although the report wasn't ready yet (after nearly one week), Stoutenbeek would organize a meeting with Prof. Dr. Gooskens, childrens neurologist, after the examination to discuss the findings.

Furthermore Stoutenbeek told us that there has been a discussion among the group of experts about the results of the MRI scans;obviously the images were not conclusive and they cannot tell us more with more certainty - but what's new?

 

But he ensured us that our baby would NOT die at birth and that even when she has blood in one of the ventricles, a child's brain could compensate that...maybe not entirely but still.

 

About the delivery: Danielle prefers a natural birth, especially with an eye on the emotional side of possible loss of our child and a next pregnancy (scartissue as a result of the caesarian is a weak spot in the uterus and can give problems). But since Little One is still in a breech, already a bit bigger, the bigger head and Danielle's high blood pressure, the chances of a normal delivery is fairly slim. Then for us of course the question rises where? But I'll get back to that later...

 

After this meeting we had to wait for another 45min and saw "a silver lining" because of what Stoutenbeek had told us.

 

Finally this morning we got to see a neurologist, Gooskens after he had just seen the MRI results again. He shattered all our positive feelings of before again because he came with a little different story:

 

a. Ventricles  - one filled with a lot of blood

b. Our baby had (is maybe still having) several bleedings in te brain,

c. The Corpus Callosum is partly there but is probably not growm further because of bleeding. 

 

The bleedings are all over the brain and this prevented (prevents) the brain tissue to grow and develop normally. What the causes and results will be...NOT KNOWN! The only thing that's certain is, that there are a lot of problems stacked on eachother and that our child will not be normal...also the "compensation story" will not be possible because of the number of bleedings.

 

Therefor Gooskens confirmed what Stoutenbeek had said before, that they are not going to let the baby suffer, just for the sake of research. They will look at all circumstances. If  and when the baby will die is not predictable, since this combination of all defects is fairly unique and Utrecht has never seen this before, but if it's 'humaner' they will stop treatment - a big reassurance for us....

 

Finally Stoutenbeek came into the meeting and told us that he would discuss this all with Drogterop and therefor the birth could also take place in Tilburg (!?). After birth our baby will then be transported to Utrecht.

 

After we left the hospital, Daan and I discussed this again and since the delivery is not going to be natural, we want to have the delivery be done in Utrecht, because no one is going to separate us from our baby... especially since we don't know how long she's going to survive!

 

Well tomorrow another day, another hospital again. 1200 meeting in Tilburg with Drogterop, where going to discuss all of the above and definately want to set a date. He can then discuss this with his colleagues in Utrecht. But end 37, start 38 is going to be the date...because we cannot cope with another few weeks.

 

Tomorrow I also have to get in touch with Kiel, since my trial contract has expired and they stated they don't need me anymore. I have to give all their shit back and get some papers from them. However I think it's a bit strange (to say at the least) that I haven't heard from them at all, only some (3) colleagues have left me a message. Well tomorrow it's over and I have other things to worry about...

 

 


What do they want?

Posted at 21:35, 30/8/2006

Today we got a phone call from Drogterop that Utrecht (University Hospital) needs to see us again. Of course then you start to wonder "why?". He told us that the experts in Utrecht couldn't agree on several things. He didn't or couldn't tell it what it was, but advised us to go there and talk to the specialists directly.

 

What are they not sure about? We know, there isn't any chance that our girl will be normal, but what do they want??? Is it just academically (which we should keep in mind...) or is it for our sake? It is clear that they know about all deficiencies but the word is, that they've never seen them all in combination...for them I can understand that it's a nice study....for us it isn't!

 

Danielle and I agreed that we will put a lot of pressure on them to tell the truth, and will stick to our ideas, which means: give birth in Tilburg and then see what happens... It was unbelieveable that we only talked to gynaegologists untill now, although the problems are tipically neurological. This is going to change tomorrow...we demanded a meeting with an neurologist...and will draw our own conclusions from that.

 

Nobody will tell us what to do, nobody will tell us what's best for us ór the baby, there are 3 lives involved here....OURS and there are only tweo people deciding....Danielle and me!

 

We'll have to be there tomorrow morning 0900 for the ultra sonic and we have the rest of the day to make arrangements for other examinations, but as far as I'm concerned, before delivery, this is the last time we're going to Utrecht. It's way too heavy for Danielle.... emotionally and physically.And that only 2 weeks before delivery!

 

 

 

 


Another days' waiting

Posted at 14:21, 29/8/2006

Yesterday we had a meeting with Drogterop in combination with Danielle's checkup. Since I'm looking for work  - my contract is running out the end of the month and Kiel obviously doesn't need me anymore, and I had to go for an interview, he suggested to have it at after (his) working time 17:30. It just shows how flexible and involved this guy is. The plan was that he was going to tell us how severe the lack of brain tissue would be and what the extra examinations in the university hospital would bring us...

 

Unfortunately, he wasn't able to reach anyone in Utrecht, which meant...no answer to the question "what chance does our daughter have to survive and how happy should we be with that?" No extra information. Nevertheless it was good to see him again, just to get rid of some of the questions that spook through our minds. When, where, how and so on.... 

 

One thing is certain now; we're going to have our child in week 37, how and when, will be discussed the end of this week. Daan prefers a natural birth, because she feels it helps her to cope with the mourning process, because we really, really have to prepare for the worst! In the womb our child moves and is protected, therefore the brain, even with huge defects, can cope. If born, life would be a struggle and it might be that she dies immediately or only suvives for a few hours. We both hope, that we at least get the chance of enjoying our daughter for at least a few days...

 

Well, tomorrow is another day....Drogterop is will call Utrecht and us tomorrow, since all univ. hospital specialists -  neurologists, gynaecologist etc. -  have a meeting this afternoon to discuss all special baby's (and ours is one of them), and they will be able to give us more details after this meeting.

 

I must say, it's so heart warming to get reactions from relatives, friends and acquaintances and that everybody is so involved. We would like to thank you all for this....!

 

I heard that the fotos are difficult to find, for a few 3D images of little one, just follow this link:

http://www.bloggers.nl/albums/plompie/

 

 

 

 


our little girl smiles (3D ultra sonic)

Posted at 13:37, 27/8/2006


Helplessness and friends

Posted at 18:28, 26/8/2006

Weekend after another shocking message. It it so unbelievable and unfair that this happens to us. We were sooo happy and ready for our little girl. The room is ready, the baby carriage, we've picked up last week is/ was waiting in the hall.

 

We had to put it upstairs, we cannot bare to see it everytime we go out or come in. We've put it in the baby room and shut the door. I personally have a problem to finish the room (2 switches) although it would probably take me just 5 minutes. Why should I, it might not even be necessary.

 

Another difficult thing is strangers starting to talk to Daan; "just a few weeks, isn't it?'', "Now, everything is nearly over and the enjoyment starts" What do they know!

 

And although it's sometimes very difficult to control our emotions, we enjoy talking to our family and friends, it's good to have so much support.

 

We would hate it if people start avoiding you just because they don't know what to say. Of course this always happens, but we don't mind...we don't expect the "right" reaction...we don't even have one...how could you??? The most important thing is that you do talk to us...

 


Another blow: August 25, 2006

Posted at 14:24, 25/8/2006

Today we had to go to the (our) gynaecologist Drogterop to discuss the results of yesterday and to decide how to go on. We were very early and had a cup of coffee when his assistant got us in.

He conformed what we already knew and we spoke about the fact that at every single meeting we got another blow. And he had another one:

 

Not only the fluid in one of the ventricles is unknown, the scan also showed, that there were several "holes" in the brain, which refers to an extreme handicap. At the moment there's no way of determining wich parts of the brain have been developed or not. With of course the uncertainty of the results of this...

 

Now the fear that we always tried to minimize, became reality - our child will be severly handicapped at the least and/or might not have a chance to live long or at all!!!

 

The feelings of that moment when he told us that were undescibable. Your first baby, will it live or not? And that 4 weeks before birth!!! How to take care of a situation like that??? Funeral or not? Kindergarten we can definately cancel...

 

The University clinic wants to see us again, but Drogterop shares our opinion, that examination will only be done if it brings something and not just for the sake of research (it's still a univ. hospital).

 

Coming monday 17:30 we'll meet up with Drogterop again and will then discuss when the delivery take place. The way we feel it, it should be asap (normally week 37). And although the doctors prefer a natural birth, we'll have to discuss this and minmize the risks for Danielle.

 

 Dear Friends, of course we know how difficult it is to react and/ or say something about this situation. We don't mind, we appreciate all the support, mails and calls. Emotions are never easy but we have to deal with them and we will!!!

Please do not avoid us because you don't know what to say.....everything is appreciated.

 

x Daan and Stephan

 

 

 

 


MRI: August 24, 2006

Posted at 00:55, 25/8/2006

Another big day, the MRI scan in the Univ. Hospital in Utrecht to see if all parts of the brain of little one have been developed. After that we need to go the children's hospital again to speak to Stoutenbeek about the results.

 

Finally what happened was, that we went to him after the scan, but the only thing he could tell us at the time was, that the 400 (!) pictures were good and that this afternoon he would meet up with 2 specialists, a childrens neurologist and a gynaegologist specialised in childrens neurology. They would be able to tell a lot more than he, about the pictures and defects. He would inform us by phone as soon as they had their meeting.

 

Finally, 17:00 he called with yet another f**** bad message, the Corpus Callosum isn't there at all? And one of the ventricles is not filled with water but with something else; blood, tumor...they don't know!

 

It makes you wonder, what the hell all these people/ specialists are doing - untill now everybody told us that they could only see a part of the CC and now all of a sudden it isn't f***** there!!! Who can you believe???

 

Now tomorrow we have yet another meeting with Drogterop and he will have to call Stoutenbeek on monday to make another appointment for us in Utrecht again. They even speak about testing us...what's the use??? What does it help??? We don't see the benefits now...

 

But...tomorrow is another  day and we're going to stress them to get the child at week 37 (wk 35 now), because Daan (and me neither) can't cope with another 5/6 weeks or a natural birth...

 

Well, we'll see!

 

 


Why?

Posted at 00:50, 25/8/2006

I just can't stop thinking "WHY is this happening to us?"

Daan did everything by the book, no alcohol, red meat, smoking and all the other stuff that is forbidden. And the you kinda start thinking about the so called parents, that couldn't care less about the health of the baby or the baby at all!

 

 

 


"Private (fun)" ultrasonic, August 18, 2006

Posted at 00:16, 25/8/2006

Today is the big day, we're going to see our child for the first time. They show you the normal ultrasonic pictures but also 3D (or 4D as they call it) pictures and everything is recorded on DVD and given to you - we did this at Babyview in Berkel-Enschot, where we live.

 

It was very special to see the smile of our baby and to see how bullheaded our kid is, all the time hands or feet in front of its' face, but beautiful to have an image with all these b/w ultra sounds.

 

I've put a few images in the photo book. (via profile)

 

 



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