5/31/2006
11 Days! Can you believe it.
Holiday in HK so I get the morning shift
It's kind of exciting doing the morning shift as you get to see the ovenight progress (although you do run the risk of being booted by the morning round as is the case right now).
This morning Will's girth is down to 36cm's. After a couple of days stable on 37 its great to see him going down again. He's also down to 2.66kg. Assuming he hasn't lost weight since he was born and that he hasn't out on weight either, that infers there isn't much fluid to go (says doctor Harry).
His feeding has also steadily improved. He took 40mls this morning and i'm about to give him a similar amount shortly. I am now quietly confident that they will take the drip out tomorrow. That is my prayer now.
They daily take out the nasal canular for periods of time to are how he goes. Apparantly when they do this, after a period of time, he starts to struggle with his breathing, so still some work to go there.
Its easy to be impatient, but we are now getting used to working on God's time. Definately a lesson in patience and trust.
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5/30/2006
Starting to eat like a Turner
One less tube
Just a quick one. Yesterday they removed one of the tubes from Wills arm. This tube was previously used to do constant blood tests, and to measure pressure inside the blood stream. As his blood tests have all been strong recently, there's no need for the tube. Good news. They are also targetting getting rid of the IV drip. They apparantly don't like it in for more than 2 weeks (absolute maximum). As a result, they are continuing to step up his feeding (now at 25 mls, and processing well). Thanks for your thoughts and prayers. Another lovely photo for you all.
5/29/2006
For those who think we're a tad nutty
Back to work now - getting phone updates for the morning
5/28/2006
37 and falling
5/27/2006
Another first - Dad feeds Will
This is a first in more than 1 respect. Obviously its the first time I've fed Will, and I have to say I very much enjoyed it. I was amazed by how strongly he sucked away at the bottle. Its also actually the first time I've bottle fed any of my children. Both Jack and Cleo outright rejected bottle feeding, so I didn't have that opportunity before.
As per my short update this morning things have gone well with Will. They are now planning to increase his food intake to 6 mls, then up to 10mls per feed. He's still not 100% on the food processing but doing much better. For the bottle I am feeding him in this picture it is just 3mls, as he already has 3mls in his stomach.
We also discovered that they bath Will every morning at 7am. While they won't let us in then, they will hold off on the bath until we're around so that we can do it. Very exciting as its great to be able to interact with him in real tangible ways, as opposed to sit by his bedside while he sleeps (which is also nice, but its easy to feel a little useless just sitting there).
Thanks Sonia so much for your wise comments yesterday. I now realise that as time has progressed my trust has been moving from God to myself / Doctors. We need to continually hand the situation to God and let him choose what happens - hard as that may seem to us at various times. Please pray that we will continue to have faith in God's goodness, regardless of the situation.
We gave him his toys back Davis
Dear Davis, please take a look at the attached pictures. We have given baby Will his toys back. He's not allowed to have them inside his crib yet, so we'll keep praying for his recovery so that he can have them to play with all the time.
38!!!!!
I've just come to the hospital, and had to come straight back out to give you all a short update. Will's tummy is no only 38cm's (still sounds big, but compared with 42 on the first day its a huge improvement). He also had completely processed all the food in his stomach when they went to feed him so they are planning to step up his feeding. I'm just so blown away by our God who answers prayer.
5/26/2006
A rollercoaster day
Today was a day of ups and downs - fortunately ending on quite an up.
In this mornings note I said that he has fought himself free of the breathing tube (this picture was taken this morning). Shortly after I wrote that I went back in only to find it in again. He was apparantly struggling too much with his breathing.
Subsequently we learnt that he was not really processing his food. Using the aspiration tube they discovered that after 2 feeds (of 5 ml each) he had 10ml unprocessed in his stomach.
This evening while we were there during the doctors round we questioned when they would do further tests. In short they do not want to for at least 2 weeks. We really couldn't get a good reason why. They very much want to see him process the fluid himself. We found this a tad frustrating to be honest. Then to further frustrate, we asked if his urine production was normal, and the doctor said no, it was high because of the problems with his kidneys (what problem with his kidneys?). After persuing this it would appear that his kidney function has been steadily improving since birth and isn't something to be concerned about.
Actually, at this point, Jules and I were feeling a little sad. After the progress of yesterday we began to build great hope of a very speedy recovery.
On a positive note to end the day, when they went to feed him this evening, he only had 2ml of unprocessed milk in his stomach. On top of that Julie got to feed him this evening. The final bit of good news was that his girth had remainded constant throughout the day. No afternoon expansion. I am very hopeful that tomorrow morning we'll have a sub 39 girth.
Please continue to pray for Will and for his speedy recovery. Please also pray for Jules and I that we will remain in good spirits and that we won't let small setbacks dissappoint us.
The morning report
I've just spent an hour with Will this morning. He pretty much slept the whole time, but it was great to sit and watch him. This morning he is a tad smaller. Down to 39cm. This is consistant with the weird smaller in the morning, bigger in the afternoon theory. Having said that, he did look smaller me today than previously (I think previous morning size was 39.5). He has also managed to win the battle against all breathing assistance. The nose thingy has also been removed (I think largely because he kept pulling it out). They have said that they may put it back if he starts to struggle with his breathing. His feeding continued overnight. He continues to eat well, but is still supplemented by the drip. I asked the doctor when they would take the drip out. He said at this rate it would be in the next few days. That would be great as it would mean it is a lot easier to pick him up etc. As for further tests, nothing as yet. An update on Jules. After having the stitches out she's moving a lot more freely and is down do taking only panadol. I am returning to work today, but will continue to spend my time bouncing back and forward to the hospital. Perhaps not as much time in waiting rooms, so a few less updates to the blog. Thanks so much for your continued thoughts and prayers. Our prayer is now that he starts to process the fluid on his own. This would be the most desirable outcome. We may never have the explanation as to the cause, but I'd be happy to be ignorant if he recovers on his own.
5/25/2006
A day of firsts
describe, but in short:
1. They removed the ventilator, and he's breathing fine.
2. They started him on milk - from a bottle ! Totally unexpected, as we thought they would use the tube.
3. Jules got to cuddle Will
4. Will was opening his eyes big time
5. He cried (a nice kind of quiet kind - the type that doesn't quite wake Dad up in the middle of the night).
Piccies first. 
The video's are just as good and exciting as the pictures.
Will's first cry
Will's first bottle feed
We have again spoken to the specialist about the problem and in short, they don't know. They are keen to see if he begins to process the liquid unaided first. If he does not, they will need to commence a more invasive form of testing to determine the issue. This will probably start with some form of Cat Scan of the bladder & associated system. Not sure how long before they decide to do that. Once he has proven to himself stable, it is lower risk to move him around, therefore lower risk to do the tests. Anyway, we must continue to be patient and prayerful, and must wait for God's timing on a resolution.
Short Update
Another good night
Will has continued to improve overnight. He has gone down slightly, however, while his girth hasn't changed, he looks physically smaller. His skin is not stretched so badly and has lost its reddish colour. Interestingly, his is now showing a trend of being smaller in the morning, and bigger in the afternoon. He has lost a little weight, but is still heavier than his birth weight. He's currently at around 3.15 kg. The doctors think he should be around 2.6, so the volume of fluid is around 600ml. He was very active this morning, and created a but of a stir when he tried to pull out his ventilator tube. I don't blame him. It looks very uncomfortable. (sorry took the photo with the flash on, but I think its quite funny). The glucose has seemingly been fine. When I came in they were just finishing changing his nappy, and its fair to say everythings working fine. Impeccable timing on my part I think. They are still talking of both taking out the ventilator and giving him milk today. I've been kicked out while the senior Doctors round is happening. Presumably when I get back in I'll know the answers to those questions. If so, I'll have a photo Will with no ventilator when I get back home. Julie is currently at her Doctors clinic getting the stitches out. She is a little nervous about this so please pray for her. I cannot reiterate enough our great appreciation for everyone's support. We are convinced that God answers prayer, and so we feel so blessed to have so much prayer being offered for Will and for us. Another update shortly hopefully with results from the current Doctors visit.
5/24/2006
How are the other kids coping?
Many people have asked how the kids are coping, so just a short one on them. Both Jack (6) and Cleo (4) have a desparate desire to meet Will (which unfortunately impossible while he's in the NICU). They understand the Will is sick and they pray for him often.
Jules was very moved this morning when, without any prompting, Jack came over to her and asked if they could pray for Will together. It was very touching to see him exhibit such concern for the brother he has never met.
As another example, last night I was apologising to the kids that I wouldn't be around to put them to bed again. Jack asked me why. When I explained I was again going to the hospital to see Will, he didn't complain at all. Rather, he just wanted to know when he would get the chance to come with me to see Will.
So in summary, to date the kids have handled the situation very well. They've both been very patient with us, not complaining at all about the lack of time we've given them in the last week. We continue to thank God for the great blessing Jack and Cleo have been in our lives.
An afternoon visit
All things going well, tomorrow may be a big day for Will. They're considering taking out the ventilator completely. Of course this will depend on how he goes tonight on the reduced support level, but its great that its even a consideration. They're also talking about giving him milk for the first time tomorrow, which is a bit faster than we expected. Not sure how they determined he was ready for this, but again I'll take it as a good sign.
I've had a few independant questions on Will's condition, so I figure I'll just answer them here.
Firstly, it would appear that this is a very very unusual case. While Ascetes is not that uncommon, the type Will has seems to be a one of a kind. None of the Doctors have seen this before, and I've been asked if I can provide all my video and photo evidence for training purposes. Likewise there is very little reference to this in any other case history the Doctors have been able to find.
Secondly, the small black marks on his tummy, are just texta marks. They are the guides for measuring his girth. He's had a small needle in his tummy to remove some fluid for the initial test and that's it.
Finally, how do they expect the fluid to dissipate? Good question. They've indicated that the body will "process" it over time. How, why, ???? Don't know.
Today's video shows Will moving around a bit more, and shows how much more freedom he gets with the hand freed up.
24th May Will with a free hand
A special note of thanks
A big change in the level of support.
While we were sitting in the waiting room typing the last update, the senior doctors were doing their checkup on Will. When we returned to his crib we discovered that they had completely cut out the morphine and the had changed his breathing support completely. Now he breathes on his own and the machine supplements him if required (synchronised mode). This is a wonderful step forward. We are now praying that little Will fights on and takes over his own breathing completely. Praise God. In addition, we spoke to the doctor again who had spoken further to the senior radiologist. It would appear that the cyst is definately the result of the problem not the cause. It is therefore nothing to be worried about. The news therefore continues to be positive. As a small piece of trivia. The doctors have now assessed that excluding the rogue fluid, Will would have been born at 2.6kg's. In the old scale that's
No change overnight.
The good news this morning is that Will is still doing fine on the reduced levels of support. Still on 10mg of morphine with no other sedative. They have also further reduced his breathing support, however even at this lower level it is still considered full support. We are now waiting to speak to the senior Dr. Apparently the ultrasound done yesterday picked up some form of cyst inside his abdomin (not in any of the organs). Not sure whether this is the cause of the problem or caused by the problem. They also had to add some fluid containing something called albumen as he has passed huge amounts of urine and has lost a lot of this (which is apparantly necessary). Today they will also try feeding him through a straw into his stomach. They will start with gluccose water and see how he takes it. Finally we had a bit of eye opening action this morning. Just the tiniest peaks, but quite exciting for us. That's about it at the minute.
5/23/2006
End of the day - Will keeps on fighting
Jules and I went to see Will this evening, and were very pleased to see his continued improvement. The first surprise to us was that they had moved him into a different crib. No more gladwrap (cling film for the English). They had previously had him under gladwrap as they needed to have very easy access to him. So this is a good sign.
Other positive steps tonight include: 1) they have completely taken him off the sedative, 2) they have reduced his morphine by 50% ; 3) they've further reduced his the ventilator. In fact at one point while we were there they took him off the ventilator together to clear out a tube. He continued to breath with no issues. They do not want to do this altogether at this stage as they believe his breathing may be too eratic / unstable without ventilation. However, very positive that he is able to breath on his own.
His girth had not gone 
down as yet, but it had also not gone up. I wonder to myself how long it takes to actually go down after being that stretched so much.
He is still producing large volumes of urine. He was up to about 650mls at around 2pm. Some time after that they changed the bag, then we we returned he was already up to 250mls. Big effort.
A final video for the day, which shows the change of scenery.
23rd May Will at the end of the day
Definately moving in the right direction
We have just come back from the hospital after something of a frustrating morning waiting to see Doctors. In the end we met with the senior surgeon and the Doctor on the ward. Both were very positive. In fact, The surgeon (Dr Chan) was genuinely excited when he pushed down on Will's stomach to see it so soft. He spoke in a very animated way to all the staff around (in Chinese), then told us that this was very good progress. He was processing the fluid by himself.
The likely synopsis is that he has a small hole somewhere in the bladder or related system. The fluid (now confirmed - pretty much - as urine) has been leaking out into the abdomin. The cathetor is now functioning correctly (Will's now passed 600+ mls of urine in less than 12 hours), and it is possible that either this is reducing the impact of the hole, or that the hole is healing naturally.
Will is to have an ultrasound this afternoon (around 3pm) of the bladder and associated system to see if they can find the hole. If not, the only way of finding it will be to have a more extensive x-ray style test that relies on more injections of tracing fluid, and moving him to another building. They will not do this until he is further stabilised (i.e. breathing by himself) unless things get dramatically worse.
They also noted that the blood tests (done 4 times per day) were showing strong improvement in the work of his Kidneys. While the blood tests had initially been ok, they were getting better and better. This is likely to be as a result of the reduced pressure on the Kidneys.
After this update, as we were leaving the hospital, we ran into the Surgeon again, who was retelling Will's case to another Doctor in an equally animated way. Clearly strong improvement.
Jules and I are now feeling very comfortable with the situation, feeling that God is definately with us, with Will and with the Doctors who care for him.
The current timeframe (optimistic best case) is that over the next 2 days Will gets progressively better such that they can ween him off the ventilator, and the sedatives. This has begun, so we'll pray that this happens.
At this point they will start to feed him. Jules is now off using the pump thingy in preparation.
I've copied another photo or two, and will subsequently attach another couple of short videos.
Short Video's
23rd May video of Will - 1
23rd May video of Will - 2
Some time with Will
We still haven't managed to speak with the doctors as they are still doing rounds. We look forward to talking with them as the nurse tells us that they have a lot more test results. It was very nice just spending some time with Will. His hair is so soft and so long. They have started to reduce the amount of sedative which means we will hopefully see a bit more movement, and he may actually get some awake time. This is another positive sign in his recovery. About half an hour or so to get the results. I will keep you all informed.
A very short visit
We turned up to the hospital just a few minutes ago. The staff were not quite ready for us to visit, but let us in for a short visit. We are now sitting outside waiting for the doctors to finish their rounds.
So no update from the doctors, but we can let you know a few small things that have given is great hope. Firstly, he has gone down to 39 cm. This is the smallest he has been since he was born. Also, it is very clear that his abdomin is not as tight. Even more movement than I noted last night. Finally, the breathing support has been reduced again and is now at its lowest level since birth.
So from our two minute visit, all looks to be improving well.
As for Jules, she spent quite a comfortable night at home. While the care in the hospital was fine, there's no place like home.
We were also blessed by one of our friends (Dorothy) who went to 'bumps to babes' and got Julie a pump thingy. She's not used one of those before as both the kids refused to take a bottle (good little kids aren't they). She gave it a go this morning which seemed to work ok. I can understand why this is needed now, but in future when he's home, i'm not a fan (wouldn't like to take away my excuse not to get up in the night now would I).
Will is not yet ready for food, but all things going well he will need it soon.
Thanks for your continuing support and prayers. Jules and I are both feeling quite calm and peaceful about the situation, which is a great blessing in these circumstances.
Ps. Dave, thanks for keeping a little humour in our lives. Your "rude" comments are of course welcome. For all the non Australian people reading, please don't be offended by Dave, he really is a nice bloke despite what everyone says.
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5/22/2006
Video as promised
Now a small step forward
Small backward step
We have just been up to see Will again. Unfortunately they have had to increase the breathing assistance again as he has again started to expand. No conclusion on the fluid at this stage. Still seems to be a choice of 2, urine or chile. The latter is produced by the lymph system. Possible that either of these systems is obstructed and therefore leaking. A number of the tests are back, but nothing conclusive. The most positive result today is that one test concluded that there was not a bacterial infection. We will be back later today to check on Will and get more of the test results. At this stage I am waiting in line to pay the bill as Julie is checking out. She is still in a bit of pain but we feel she will be more comfortable at home. It is only 10 minutes door to door from our house to the hospital, so no real issue there. For those thinking of visiting Jules, please note this change of her location. Will is still fighting and is a lot more active today than yesterday. Thank you so much for your continuing prayers, they are a great support for us as we continue to await diagnosis.
Small advance on the theory
We spoke briefly with the senior surgeon again this morning while up visiting Will. They are still waiting for the tests to be conducted, but they gave us a few minor updates.
They have re-done the catheter. This is apparantly very hard as he as a) small, and b) swollen. The good news is that he has now started passing urine again. The theory is still that the fluid is urine, and that it was caused by some blockage. To be determined of course on the test results.
If it is urine, and he is passing urine, then no invasive surgery will be required. They will simply let him continue to process the waste himself. They don't want to remove any more of the fluid to reduce the risk of infection.
So kind of good so far.
A brief update on Jules while I'm typing. There now seems to be some question as to whether or not she'll come home today. They have now suggested it is our choice. We tried to determine what factors we would take into account, but it was just a little tough. Really the first language barrier we've had the whole time we've been in Queen Mary. In the end we elected to have Julie come home today, only to find out that this was actually based on the Doctors discretion anyway. We'll see.
Today's picture of Will attached. I have a brief video for you, but cannot work out how to post that here, so will have to update it on a homepage of some sort, then attach a link. Later
Current theory
Test results are not back yet, however we have just spoken to one of the senior Obstetricians (Prof Lau). He says that the current thinking is that the fluid is actually urine. As a result it is possible that the problem stems from some form of perforation in the bladder or the urinary tract. If this is the problem, then Will may need surgery to repair the issue. They will drain the fluid when they have confirmed this. They also need to determine if there has been any issue with the kidneys as a result of the pressure. At this stage they still look good, but it needs to be checked. If there is some issue this is a more serious concern. They will know some time this afternoon whether or not this diagnosis is correct. They hope it is because at this stage they have no other theories as to the cause. It is also not the worst case scenario which is good news.
Tap in
The tap has been completed. They did not leave a catheter in to avoid risk of infection.
The fluid was a straw colour similar to urnine. Still no confirmation on what it is. They removed 250cc (I think this is the same as ml's). This released the pressure somewhat, however Julie tells me that he is still quite bloated. Unfortunalety I didn't get to the hospital in time to see him.
Will's vital signs were all good during the procedure, so no immediate problems.
They decided to do the procedure first thing as they were concerned about the pressure on the kidneys, bladder etc. as he had stopped passing urine during the night. They do not think that the fluid is urine, rather, they think the pressure stopped blood flow to the kidneys and therefore Will wasn't able to process as norminal.
Doing the procedure early also avoided conflict with their daily operating schedule.
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Not so good overnight - urgent procedure
5/21/2006
Afternoon update
Afternoon update Will's status is still relatively stable. He has remained at the same size (abdomin around 40.5cm). This morning they reduced the pressure on the breathing and they removed the anti convulsant drugs. Will coped fine with both of these changes. The next step is to tap the fluid tomorrow. They will then send this off for testing which will take between a few hours and a few days depending on the test. They will put some form of catheter in to control the flow of the fluid. They will not release all the pressure at this stage. Again this procedure is not without risk, but really its the only way to determine what the problem is. So please continue to pray for Will through tomorrow as this procedure happens. Sorry that I can't tell you the time, but at this stage I don't know. As an update on Jules, she's feeling quite a bit better. She surprised herself by enjoying a bowl of conjee and is chewing down on a plate of sweet and sour pork with some un-named vegetable as I type. Amazingly they are suggesting that she will check out tomorrow. We were a bit surprised by that this morning but are now feeling good about the idea. At this stage, my next update will be tomorrow unless there is a change in Will's status. Just a side bar note. We heard today that many thousands of people prayed for Will this morning in many churches in Hong Kong, the US and Australia (probably 1000 in our home church, ECC, alone). Thank you so much for this. We feel that there is no doubt that God is listening and is working through this situation.
Mum gets some time with Will
It was also the first time she had moved off her back. Initial thoughts about having a C section is that, if you have a choice, take the regular vaginal birth. She's in quite a bit of pain and can't understand why in the world anyone would by choice do it.
Will is still in stable condition. No change from the earlier notes on his condition. More photo's comming this arvo.
Back in Pink
Just a quick one to let you know that Jules has moved out of her purple surgery gown back into the pretty pink PJ's. I even have permission to take a picture (pending hairbrush) which I will attach as soon as I get back to my computer. Julie tried to convince the staff to let her wear her own PJ's but they wouldn't let her just in case they wouldn't recognise her as a patient (she wondered how many Gwai Lo's wander around Queen Mary in their PJ's). She is now off the drip, blood pressure machine, oxygen assesment, cathetor etc. And has clearence to go up and see Will (as soon as the corridor cleaning is finished) which she is very much looking forward to. Julie is seriously considering giving up her standard breakfast for rice water (which is her staple diet at the minute), but she is also looking forward to advancing to Congee later today. Yummy.
A stable night
I have just spent about half an hour with Will. It was wonderful to spend some time with him.
Over the course of the night his abdomin has stayed about the same size which, while not exceedingly positive is also not negative.
During the night he had both bowel and bladder movements, which confirmed that the issue is not related to the bowel. The condition of his heart, kidneys and liver also all seem very positive.
In addition they were able to reduce the support from the ventilator, which is quite positive.
Today, while he remains stable they will continue to monitor him. One thing I failed to mention yesterday was that shortly after birth he appeared to have some form of seizure. As a result they have him some anti convulsant drugs. They have now been monitoring for further seizures and there have been none. They now think that the seizure may have been a reaction to the drugs he was given, hence are now planning to reduce the anti convulsant drugs and continue to monitor him.
The current plan is to monitor for today, then tap his abdomin tomorrow. I don't believe this requires a general. Once they do this they will be able to test the fluid to determine the cause. They won't do this today as a number of the tests are considered optional and are therefore not done on Sundays.
Thanks all for your continued prayers.
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5/20/2006
Will's first 12 hours
After the Scan
Just a short one. Praise God that they managed to get Will too and from the scan without incident. Initial signs are that he doesn't have any preferation of the bowel. In addition they think he is no longer expanding which is a good thing. They will now measure him on an hourly basis. If he starts to go down, then they will not do anything. This would be the most desirable result. They are still not keen to drain the fluid as there are many possible negative consequences. They will only take this option if he continues to expand and his breathing becomes more unstable. I will know more in the next few hours.
William David Turner (Will)
Just a quick note to let you know we've decided to call the baby Will. There are two reasons why we chose this name. 1. It meets Julies requirement of a name with only 4 letters. 2. In deciding to have another baby we chose to let God decide as we weren't sure as to whether or not it was God's will (long story on how we did this). Now what happens to the baby now is totally God's will. So Will seemed to be a good name. So now our Will is in God's hands, as he is God's Will.
Now for a CT scan
Latest update. Still no progress on the cause. It appears that the contrast is stuck in the small bowell. Unfortunately this doesn't seem to tell them anything. Now they are planning to inject a contrast into the blood steam and do a CT scan. There is some risk with this as they need to transfer the baby from ICU to a different area. They have also now told me that they do not want to release the pressure as the pressure may actually be helping to stop the flow from whatever is leaking. They described the baby as unstable as the ventilators are increasingly required to keep the baby breathing. Please pray for us and particularly for the doctors that the transfer will be ok.
Brief Update
Just spoke with the Doctor. The contrast (not trace as previously described) has currently reached the small bowel. No leak identified yet. They are waiting on the next x ray. They will then consult with the surgeon, then probably release the pressure on the abdomin by draining the fluid. They have not yet done this as they are keen to identify the cause first. At this stage however they've had to increase the level of breathing support as a result of the continuing increase in pressure. For this reason they do not want to wait much longer to release the pressure. Thanks again for all of your continued prayers.
Baby Turner Comes Early
Baby Turner was born at around 11am (HK Time) today (20th May). He weighed in at a stunning 3.1kg's - however, much of that weight can be attributed to the swelling of his stomach.
Julie is doing fine, although is very tired after the operation.
At this stage they still do not know the cause of the swelling. His stomach is continuing to expand. They are currently running a "trace" to determine if the issue is related to a possible problem with his bowel. This will go on for the next hour or so, then we will know some more.
If it turns out to be a bowel problem they will operate on the baby today.
Thanks to all for your great support. We had a great crew at the hostpital, and we heard stories of people praying for us from New York to Sydney - stopping off with large groups in both Hong Kong and the Philippines.
