Post-op update

Hi everyone,

We saw our baby on the scan yesterday, and this looked a lot better. His blood flow has almost completely normalised, and that only 16 hours after the surgery.

Louise is recovering as well, although she still had some pain from the epidural. She had a cocktail of a lot of different medications for the surgery, so she was a bit out of it on the Saturday morning, but was she felt a lot better already in the afternoon. I spoke to her this morning, and she slept very well, so we expect to be going home this afternoon.

I'll post a picture from home, and will let you know more soon.

Thijs

Leuven surgery - Mixed news

Hello everyone,

Louise is now in Leuven hospital while I am staying at my Aunt in Brussels. Thursday was a day of examinations, a echo/ultrasound scan, an MRI and the 'usual' blood, blood pressure, etc.
We heard that the gap in the airway is about 5 millimeter, which is a lot. As you can understand we were very unhappy to hear this.

Despite the large blockage the doctors decided to operate anyway, because they were unsure what the blockage was, and wanted to try everything before giving up. The surgery lasted about 3,5 hours because they had to be very careful not to do any damage. The result was that they couldn't remove the blockage, but have taken a lot of fluid out of the baby's belly (350 ml). They also gave the baby more fluid to swim around in so it can move better and grow easily.

We hope that this will give the baby a better chance to reach an age and size were a successful exit procedure can be performed. So now it is back to waiting, and hoping that the baby will not accumulate fluid too quickly. The docotors may be able to take fluid out of his belly one more time, but these operations are not without risk.

So all in all not a fantastic result, but they have been able to help the baby a little bit. We hope to see our little man today on the echo screen, to see how he is doing. I'll let you know more after that.

Thijs

Something Positive!

Thanks everyone for your calls, comments posted on the blogs and especially our teddy to keep us company down in Leuven!
As you can imagine, we've been busy phoning so many organisations to make sure everything is taken care of. We've also been finding out what we can from the internet regarding the surgery. Of course there isn't much, but we did find one positive article and so we thought it a good idea to share with you all. Although we're aware that this is a risky and cutting edge type of surgery, we found hope reading this article and hope you do too.

http://www3.interscience.wiley.com/cgi-bin/abstract/112159488/ABSTRACT?CRETRY=1&SRETRY=0

Summary - In 2005 the same surgery I will be having was performed on a baby of the same age in Bonn Germany. Not only did it all go well, but the baby thrived afterwards.

Louise & Thijs

Leuven

What a frantic week it's been! We had an uneventful journey down to Leuven in Belgium, and after some wandering around the massive complex we finally mastered the booking in process and we were directed to the correct wing of the hospital. It was a very long day of waiting, testing and lots of questions. Finally we have a conclusion:
The baby is indeed showing early warning signs of distress, and so time is now of the essence. An experimental operation needs to be performed to attempt to save baby and this is of course not without risk. However, without this operation, baby cannot hope to continue.

The operation will be performed on Friday. Louise will still have the MRI in Leiden on Thursday, as all diagnostic information is of course going to be useful. Then on Thursday evening we will travel to Leuven to be booked in to the hospital. We don't have much more information regarding duration of stay etc. We will be busy phoning our doctors here in the Netherlands this week to find out more.

Due to our absence, the blog may not be updated for a while so please don't let the long silence worry you. As soon as we have access online our updates will be posted.

Wish us well, and please continue to think positively for us all.

Louise & Thijs

Leiden UMC visit 18 april

Hello everyone,

We had our weekly visit to Leiden yesterday, but it went not as we hoped. Our little man is not growing as fast as he should, and went from above average size 2 weeks ago to average for his age.
This has the doctors a bit worried, so we are going to visit Leuven today to consult with the doctors there. Leuven is a specialized centre in pre birth operations on babies, so they will examine and see if they can help him.

This visit is just for them to examine our baby, so they can assess the chances of an operation, and if it is possible at all. Our MRI scan next week in Leiden may also tell the doctors more, but the result will take a week to be processed. So we are back to waiting and hoping.

How we're doing

So many people have been so kind to us, asking how we're doing, sending lovely flowers, cards and messages. Thank you so much. We have been so moved by everyone's kindness and understanding. We thought it would be a good idea to write how we are doing and feeling as there are so many of you that are concerned about us.

For the most part we're doing pretty well. We have mostly good days with some bad days thrown in. Hospital visits are particularly difficult as the reality of the situation is in your face on those days.
We both concentrate on keeping ourselves positive. I enjoy feeling the baby move, so it's easier for me to just focus on keeping calm for the baby and try to just enjoying the feeling of being pregnant.
It's a bit harder for Thijs to feel this as the movements are still soft, well at least on the outside!
Thijs has been fantastic looking into all the practical aspects of how we will manage, depending on the different scenarios, after the birth. I'm very grateful that he spares me this because it is quite stressful.
The positive thing about this situation is how much closer we are and how much we appreciate each other. Maybe that's a bit soppy to put in a blog, but it would be impossible to cope with this situation without the strength we find in each other.

We've found it a bit difficult to raise our spirits last week, so it was great that we had been invited to visit friends and family over the weekend.
It was a such a relaxing weekend! We didn't have to make decisions about anything, we just ate all the fabulous food put in front of us and relaxed in great company. By Sunday night we felt like we had enjoyed a little holiday away from our life.

This gave us the idea that we should arrange to do something every weekend, where possible. Just get out on the bikes, or visit a museum - anything really. It also helps us as we will at least have something else to talk about other than this situation!
Actually, if you don't mind, you could help here. Do you have any recommendations for places you've visited? Do you have any ideas for day trips or websites where we can find stuff? Please let us know.

So that's how we're doing! Taking things a week at a time, and trying not to worry about things we cannot do anything about. It's not easy, but it's made easier by having each other and being able to talk to you and all the kind things that people are doing for and saying to us. We have great medical staff working to support us and for the rest we have to have faith.

Louise & Thijs

Leiden Follow Up Appointment

Our appointment wasn't as long this week, just a follow up scan to check how the wee man is doing. Luckily there was no perceptible change with regards to the syndrome and the baby is growing bigger which is all for the good. We saw the little man waving to the camera and stretching out his legs, so good activity, which also supports that the baby is not in pain or under any stress.


We spoke further with the doctor who told us that it's not unrealistic to have hope. He's arranging an MRI for 2 weeks time, by then the baby should be big enough to be able to see more clearly where the obstruction is sitting, and how problematic it actually is. For now, we will carry on with a weekly scan in Leiden to make sure the baby doesn't get any worse and we stay hopeful.

Louise and Thijs

Thanks All

We just wanted to say a big thank you for your kind words and phone calls - it's helped a lot to know people are thinking about us and by talking we were able to sort our own thoughts out.

Now that the initial shock has worn off, we're feeling a bit calmer in ourselves and able to cope on a day to day basis. We're both back at work, which helps to keep the mind occupied. Work has been great and very supportive to us both, so that's also a weight off our shoulders.

We don't know any more details regarding options, but we know that the baby is currently not under any duress or suffering at this moment. If his kicks or punches are anything to go by, he's strong and fighting fit! We're off to Leiden on Thursday where we hope to hear a bit more about how the baby is doing. We don't expect much information regarding the Syndrome as it is quite a rare and there isn't that much data to share. We will of course update the blog with whatever news or updates to keep you informed.

We've decided to remain with a positive attitude and mind set until we are told differently. We will just hope for the best, and not assume the worst before it actually happens. It is very uplifting to know that all of you support us, and we thank you again,

Louise en Thijs.

News

Hi everyone,

Well this is a bit difficult to write, but in typical style our baby chooses to continue with the excitement that Thijs and I would rather not have during pregnancy!

We had our 20 week echo yesterday, with not good results. Baby has a suspected blockage somewhere in his throat which is causing build up of fluid in his lungs and in his body cavity. This has serious repercussions because it could over stress the internal organs and cause death.
For medical information: http://www.fetalcarecenter.org/fetal-surgery/chaos/

We are not without hope though. Sometimes the blockage clears itself, only time will tell if this happens. There is also experimental surgery that (if the blockage is thin enough) can be treated by laser in vitro. We could opt for a cesarian birth where a hole will be cut into the baby's wind pipe and a tube inserted to allow him to breath. Surgery to repair or reconstruct the throat could be done once baby is old enough, around 1 years old. However it is likely that baby wouldn't be able to talk ever.

This leaves us with some difficult decisions to make and to be honest it's all a lot to take in. We had hoped the most exciting times were behind us and that we could just enjoy a nice lazy pregnancy! There is a saying, "what doesn't kill us makes us stronger." So wish us courage and strength dear friends, and any prayers you could say for us are appreciated.

It's difficult to share this news with you all, but we need to share it with you because without your support we would be much worse off.

We're going to take time now to research and talk about all of this. We'll update the blog as soon as we know any more. Next appointment is next week. We're very fortunate that we're under the care of the Leiden University Medical Hospital, so we're getting the best of care.

Take care all. Much love,

Louise & Thijs