Thursday Update

It is almost getting boring :-), but everything went well again yesterday. The little man was moving about, and we got an older machine so it was a bit difficult to do all the measurements. The doctor did manage to get all the data in the end, and everything looked good. The growth was good, with the size of the head a bit above average, and the leg now also a tiny bit above average. No picture this time, as he was moving and refused to pose for a nice shot.

We like boring!

Thijs


P.S. the new bed is very comfortable.

Looking forward

Hi everyone,

The doctor in Leiden told us a bit about what to expect and when. He hopes that they can perform the exit-procedure in week 36 of the pregnancy, which will be almost full term. They have already recruited a few members for the team, among which a fetal heart and lung specialist, and a specialist on fetal anaesthesia, and our own doctor who is an expert in fetal care as well. All of these people are among the best in the Netherlands so we are in very good hands.
In two to three weeks we get to talk to the entire team, and will get to know more about the care our little man will need after birth.

Completely unrelated news: both our new bed and our new car have arrived. The bed today, and I can pick up the car on friday. Offcourse this means we will have a bed too many (unfortunately not a car). So if someone needs a double bed, let us know. I have given Bas first right, but if no-one wants it it will go to the kringloop most likely.

Thijs

Situation unchanged, which is good!

Hi everyone,


We had another check up yesterday, and everything basically stayed the same. They did not measure growth this time, as they only do so every other week, but the heart functions were good. The amount of fluid in the belly/body cavity stayed about the same as well.


The pictures from this echo aren't as clear as we had an older machine this time, but the second is his foot. I will post them tonight, but already tell you that you can see that the foot got a little bit pushed out of alignment when he didn't have much amniotic fluid to swim around in. Since that is now a lot better it shouldn't get any worse (and hasn't gotten worse since the operation), and as such is no real problem.

After the scan/echo we had a short talk with one of the doctors about the plans for the EXIT procedure, which is a bit heavier then we thought. It will involve a very big team, and Louise will have to be sedated completely.
This procedure has been developed about 10 years ago, and is now getting more wide spread, seeing the first EXIT in ireland in 2007, and april 2008 for the university of Utah. In a review article made in 2004 51 out of 52 babies were born alive, but since then the technique has been further refined so we are looking forward to this procedure with confidence.
See: http://en.wikipedia.org/wiki/EXIT_procedure
The long term prospects of babies born through this procedure is completely dependant on what they actually have, allthough I am glad to say that our little one does not have any signs of something called 'congenital diaphragmatic hernia' which is mentioned in one of the articles in the wiki link above.


We have an appointment with the professor in Leiden on Monday to go over the details, and ask further questions. After that another scan on thursday offcourse. We'll keep you updated,



Thijs

Thursday Checkup

We're almost giddy with joy at this last checkup. Finally it was good news.

Before I get carried away, the reality is that Baby still has a swollen belly, but the positive part is that it's not grown any bigger. Also, one part of his heart is still under performing, but that's due to the fluid in his lungs. Again the positive result is that this has not gotten any worse and so is stable.

Before the surgery baby's growth had fallen off, and he was measuring under his actual age, this week we saw that baby is now measuring 3 days over his age. So not only has he caught up, he's thriving. The blood measurements (how his heart delivers the blood to his vital organs) were within normal baby parameters - so not just stable but good! :)

While the echo was being performed we saw him take a drink. His little hand was visible, and he had put his little finger up in the air while he was drinking - a proper British gentleman! Thijs is hoping he won't pick up any bad habits from his mum - like preferring milk in his tea! ;)

Baby is very active and quite strong in his preference of exactly where he likes my internal organs to be positioned. I feel like I am getting beaten up from the inside! I'm loving every moment of it, it shows he's such a strong little fighter.
As you know, I'm on house arrest - sorry home rest! I have to say that it is very dull and quite frustrating as I'm not allowed to do the list of things that my pregnant mind tells me is vital to complete before baby is here! Poor Thijs now has two full time jobs!

We've had some friends drop by with Pizza, which was great fun and a chance to talk about other things outside this house without the hassle of cooking. Very luxurious! Our friend Berbera came and took some wonderful photos, which cheered me up no end. Also Thijs' parents, Chris and Lex, dropped by last Saturday, which was great as Lex helped Thijs with some jobs around the house and Chris shared her knitting knowledge with me. So I hope that I will at least have a useful skill after all this sitting around. First I have to practice but then I hope to actually be able to produce something in time for baby coming home. Chris also indulged me while I pulled out all the baby clothes we have and laughed and imagined how cute he will look in them. I have to admit, the volume of clothes is over the top! In our defense, I have to point out that a lot of this was given to us so we didn't go over the top buying things. I've now have an obsession of holding the rompers up to my stomach and I can't believe that such tiny clothes will actually fit (or even be too big) for the little angel I have inside my enormous belly!! Have you seen the photo on the blog? That really is my bump!!

We are now at the stage where we want to know when baby will be born and what happens next. It feels a bit nervous to be looking to the future, but also quite exciting to have reached this far. Our doctor wasn't available at this appointment but Leiden took note of our questions and we hope that we will be able to know more about the plans for the future next week. As soon as we have more news, we will of course post and let you know. Which will probably be after next weeks visit.

So thanks to you all for the comments on the blog, phone calls, mails and visits they really do help us to keep positive and connected to the outside world. Once we get the scanner connected to the laptop we'll post the really cute photo's we got from this weeks echo. I swear our little boy has Thijs' nose. See what you think! :)

Take care,

Louise

6 Months!

The 6 months mark went past last Sunday. We did not have a big celebration, but it was still nice to discover. So only three months to go if it was a conventional pregnancy. We are hoping for another 6 to 8 weeks, so it is actually 3/4 along the way.

Anyway, another land mark passed, which we are very happy about. As a lucky coincidence Berbera offered to take take some pictures of Louise's bump, one of which now graces this post.

See more of her work, and details at http://www.berbera.nl/

The summer weather recently has been a bit difficult for Louise, she had a lot of water retention. So she had to lie on the couch and put her feet up, and we haven't been able to go to the beach as much as we would normally. Lilo is a bit put out with us, but it also very hot for her.

Sleep has also been a bit difficult for the both of us, but that is probably the same for everyone with a bedroom under a flat roof :-) .

You will hear from us again Thursday evening or Friday morning after our next check up in Leiden.

Thijs

Tuesday check

Another check up yesterday, this time by the main gyneacologist himself, so he was able to tell us what was going on immediately. The baby is stable, which is good. This visit to Leiden was a lot less stressfull than the previous one, because the baby has been very active, and because there were no waits between the scan and a consult with the doctor.
We didn't get a picture though, but since I still haven't scanned the previous ones....

The doctors have started to talk about were the birth/EXIT procedure will take place, and it could be Leiden, Rotterdam or Leuven. It is good to know that they are looking forward, so they at least see a chance for us.

Our next check will be on thursdaythe 15th, the regular tuesday will become a thursday again as it was before.

Thijs

First check up in leiden after the operation

Hi everyone,

We are just back from our check up in Leiden, which was very stressful. Seeing Noah is always nice, but off course we have had some bad news while seeing him, so stress levels are very high. His belly is swollen again, so we were afraid things had taken a turn for the worse. Luckily the hart and arteries were good, and he is growing on schedule. Since the hart is the most important, and that is still good, we are very relieved.

I'll post a scan tomorrow, and update again in a few days. Next appointment is Tuesday, our new weekly day for the scan.

Thijs