Some final photo's

Harry has pretty much signed off and many people will have stopped checking on Will's progress now that he's home but I thought I'd add a few more photos and a final word. We have really enjoyed Will's first three days at home. He is a typical third child, being dragged from pillar to post having already attended a gymnastic class, gone to the movies, joined us at Care Group (Bible Study), gone out for dinner and then lunch the next day, finally made it to church and laid by the pool. It is so great to have him as part of the family. The kids are proudly showing him off to all and sundry, asking anyone who passes by if they would like to touch their brother. Will has been coping with all of this quite well, he is feeding and sleeping through it all and looking cute to boot. So the photos are: "look Mum, no catheter!!" Happy to say goodbye to Ward K10S at Queen Mary Hospital. They have been marvelous but it's time to move on. Back home with Jack and Cleo, lying on Will's handmade quilted floor play rug - thank you Deanna. Finally, thanks so much to everyone for their prayers, love and support. The old saying goes "a problem shared is a problem halved" and I have to say it feels like you've all taken a portion of our "problem" and we have been left with the smallest amount. Harry and I then gave this remnant to God so really you and He have taken the load for us both. It's been a busy, demanding and tiring 6 weeks but Will's life and your love have been just two of the excellent things to come of it. We've also seen the arrival of Tom, Katie, Toby and Jacob - 5 babies in 6 weeks, stop drinking the water people! I will hopefully get to sending out "birth announcements/thank you cards" but for those who have sent comments anonymously and for those of you whose email I don't have, thank you and please forgive the lack of personal correspondence. Please continue to pray for babies Isaac and Toby as they fight on to be released from ICU to go to their homes. Well, until the next adventure in the Turner 5's lives, good bye and loads of love, Jules.

Home at last

Great news. Will is now home for keeps. And he seems to be sleeping through the night without much problem (or at least he's not waking up loudly enough to wake Dad from his slumber). Its just amazing to remove the hospital routine, and to have a baby that can be stuck in a pram or a car seat and taken places. Jules was able to take the kids to gymanstics (although Will did sleep through it entirely - lazy little fella), and we were both able to go to our care group (Bible study) - Will included. So life is back to normal for us (although of course somewhat different given we've now 3 kids to deal with). We have truly had an amazing experience over the past 6 weeks. A lesson to trust in God, and a lesson that God's plans and our plans may not be in line. Last night at care group we read John 14. In John 14:1 Jesus says "Do not let your hearts be troubled, trust in God; trust also in me" (Colin Buchanan fans are fogiven for trying to sing this bit). This was said in the leadup to Jesus death (for us) on a cross. The listeners at that time had absolutely no idea how Jesus being captured and crucified could be for good (put yourself in their shoes for a minute) - yet it turned out to be the most amazing sacrifice of all time and the reason we can all have confidence in our salvation. A terrible event being in line with (and in fact totally required for) God's plan. So the lesson, Trust in God; Trust also in Jesus. REGARDLESS of the circumstance. God's plans are much bigger than ours. Sometimes we cannot understand them, but that doesn't make them wrong - that just means we need to trust that God has our best interest in mind. Thankfully God's plan has been to give us Will back. Not sure if there will be any further updates on the blog. Perhaps a few pictures. Now that Will is home, please thank God for his kindness. As you know we have also been asking you to pray for Isaac. Please continue to do this as he has a much longer road to travel than it turned out will did. His site is www.soniaandjong.blogspot.com Further, another very good friend of ours (Esther) is about to have a baby who has CDH - due 5th July. His name will be Toby, and they have also setup a blog. I'm sure they wouldn't mind if you prayed for them also. http://baby-toby.blogspot.com Thank you all again for your wonderful support. A fantastic picture to us of what heaven will be like.

His bladder looks to be working well - coming home tomorrow

His bladder seems to be working well. Unfortunately his nappy (daiper for all you Americans) is not. This afternoon I experienced first hand how well his bladder is working. While nursing (not to be confused with breast feeding) him he decided to prove that the Huggies were no match for his stream. Great news (although I perhaps ended up a tad warmer and wetter than I'd hoped to be). Julie suggested its revenge for the fact that I (apparantly) "refuse" to change his nappy. Complete rubbish of course. Its fair to say I ALWAYS get the bad ones - so not really sure where Jules is coming from. We also had an update today from the Doctor on the results of the ultrasound he had on Tuesday. In short, everything looks to be fine. No indication of abnormal distention of the bladder, no indication of problems with the spine etc. There was one slightly concerning result from the ultrasound in that they found some evidence of calcification in the kidneys. They don't seem at all worried about that, and have suggested that he needs a further ultrasound in 2 or 3 months to see how its going. So tomorrow he comes home. I was planning to go with Jules to the hospital for the big day, however, they are yet to make their minds up as to what time they will finish writing the "discharge" report (nothing to do with the stream I'm told). So Jules will get that joy on her own (I will particularly miss the bit where you line up for hours to pay the bill). We are overjoyed with thanks to God for his great blessing to us. It is now becoming something of a blur as to what happened. The concerns and stresses of just a few weeks ago are now completely gone. God is great indeed. Things haven't necessarily gone as planned (and even now I'm feeling just a tad enthusiastic about Will coming home tomorrow - hoping that this time I manage to line up with God's timing), but we have learnt a lot about trusting God - in particular that sometimes (perhaps often) we have to trust that Gods plans for us are better than our own. A hard lesson indeed. More on this tomorrow - all going well, one of our last posts to this blog.

A wee bit of progress

Jules and I both made it to the hospital this afternoon. It was really unbelievable to see will without any wires, tubes, pipes etc. attached to him. Its the first time I've seen that in person, so I was quite pleased. Jules fed him for about 45 minutes. One of the nurses had mistakenly defrosted a bottle of milk for Will, so after the 45 minute feed we decided to see if he'd take any of the bottle as a supplement. He wolfed down an 80ml bottle! Clearly nothing wrong with the appetite. This is the second time he's done this in the last couple of days, so Jules has gone out and bought some formula as a reserve and is planning on calling the Chinese herbal breast feeding person to try to help increase capacity (so to speak). Just as we were leaving the nurse decided to change Will's nappy (thanks to a wopper of a poo that I had politely ignored). She was going to place a little bag on him to catch the wee (test the volume or something). As she opened up the nappy he decided to demonstrate how strong his stream was. Jules and I were both pretty happy to see this as it gave us comfort that its definately getting better. When we asked the nurse whether this constituted a strong stream, she answered that it was ok, but that it turned to a dribble at the end. Hmmm. I couldn't help but say "that's the way it works isn't it?". I wondered if these nurses had in fact ever seen a boy do a wee before. Have they never wondered how those drips get on the toilet floor? I guess they're not going to teach him to shake are they? Anyway, the latest news is that if the stream continues to be ok he will be discharged from hospital on Thursday - 1 day before his initial due date.

Stream or no Stream.... The answer

Julie promised a short post about now to let you know whether or not Will's bladder is now working. The answer? A seamingly healthy stream. Jules turned up to find him off the cathetor, but in a nappy. She asked how they were assessing his stream if he had a nappy on and they told her that there was no need to keep assessing as he had wee'd on one of them while changing the nappy. When can he come home? Too hard. One of those questions that noone in the hospital seems to know the answer to. Praise God 'eh.

Praise God for small mercies

While Will continues his quest to come home, we can praise God for small mercies. Imagine if, while going through these current difficulties, he also had to watch Australia get robbed by a terrible refereeing decision last night in the game against Italy! Anyway, somewhat bleary eyed this morning (and totally disenfranchised by Soccer / Football) I have added the photo's as noted by Julie. She's taking some amazing closeup photo's. Every day a little closer. I might encourage her to stop soon as I'm not sure anyone's interested in a closeup of the small freckle on his left cheek.....

Take 4!

Tomorrow , Tuesday, 6am Hong Kong time, will be the fourth time Will’s catheter will be removed.  We are praying that the past few days of bladder control training has paid off and Will has a strong, steady, straw-coloured stream!  Wanting to be prepared, I asked the nurse what was the next step if he was still ‘dribbling” and she just smiled.  Quizzically I asked again and she told me the doctor thinks that this will work and we won’t need to do anything else.  Although I am not getting my hopes up it is the first time this doctor hasn’t covered all his bases and kept his cards close to his chest (can I use any more metaphors?).  Maybe she wasn’t supposed to let his optimism slip!

I took some lovely photos today. Will’s face is getting chubby, in my opinion, and his ears are also a little fatter.  “Fat ears?” I hear you say.  Fat in that they are no longer at one with his skull.  However, as Harry is not home you will have to wait for the photos and for tomorrow’s good news.  I won’t say bad news as even if we don’t get good news tomorrow there will come a day when we will, it just means waiting a little longer.

I’ll phone Harry at midday tomorrow (after I’ve seen Will) and he will update the blog then.  If you’re a blog addict, as several people have confessed to being, then log on then to find out the “stream report”.  Again, thanks for your prayers, I look forward to the day when we can joke with a teenage Will and tell him half the world was praying for his bladder and his “stream”!

Love Jules.

Dissappointment - the Cathetor is back

Well, fair to say Jules and I are a bit dissappointed this morning. After monitoring Will's "stream" last night, they determined that his bladder pretty much isn't working, and the wee was just leaking out. As a result, they've decided to put the cathetor back in. Their plan is to try to "train" the bladder. They will clamp the cathetor for 2 hours, then release it for an hour, then clamp it, etc. Trying to get the bladder used to filling and contracting etc. This will go until at least Tuesday next week, at which point they'll try to take the Cathetor out again and monitor his progress. If that doesn't work, there is potential that he has damaged his a nerve or his spine or somthing that tells the bladder when to contract and when not to. I pray that this is not the case because I can't get my head around what comes next if that is the case. So for us it's back to tag teaming at the hospital. Julie's back to pumping rather than breast feeding, and the kids are back to missing out on seeing Will again. Things just aren't easy are they. God has his plans for us, and we need to learn to live with them and trust in God's goodness for us.

Some Photo's as promised - No More Wires!!

As Julie promised yesterday, here are some photos of the kids interacting with Will. It has been great to have him home this week. He's back in the hospital, and its a tad weird. We're now constantly behaving as if he's here, trying to be quite in the bedroom, listening for him crying, even stressing over forgetting to give him his medicine. Yesterday at 3pm they took Will's final tube out. The cathetor is now gone. We're finally finished with a wired up baby. The plan was revised slightly yesterday. Will's going to nude it up in the humidy crib while they watch to see "quality of stream". If his wee is a constant dribble, there's probably something wrong with his bladder. If its a decent stream, then his bladder is working. Great fun fo Will, but can't imagine its the best part of a nurses job. I believe that if he has a decent stream, we may get him home sooner rather than later. I'm hopeful (and praying for) today, but who can tell.

Back to Bed 21

I guess I should start by apologizing for the lack of updates this week.  The reason for our tardiness is good though because with Will in the house I am suddenly a mother of three in action and there is no time to be sitting at the computer, or drinking a cup of tea, or sleeping more than two hours at a time, or watching a movie in its entirety!  And I am delighted!!  

 

Today Will has returned to hospital to have his catheter removed, hence I’m back in the saddle and doing my emailing and blog updating.  Will and I dropped Harry off to Jack’s school at 8.30am on our way to the hospital and as I collected Harry at 10.30am he asked if Will was in the car (you can’t see in the car seat from the front seat).  I said “You must be dreaming!” because of course we need to have him assessed by all and sundry and observed for many hours before that would be possible.  It is great that the team are so conscientious, I just need to be more patient!  Would you believe I met another Dr Chan this morning – this time a woman.  She was very helpful and explained all the procedures Will still had to have and why. 

 

What are they?  OK, first he had his temperature taken – not too high, therefore no infection. Second, they collected a urine sample which they will test for bacteria.  Third, they will take some blood to check his kidney function.  Fourth, he will have an injection of antibiotics (super strength on top of his oral Antibiotics) before fifth, Dr Chan (the pediatric surgeon) will remove the catheter.  Then we play the waiting game.  Will’s nappies/diapers will be weighed and assessed against his regular urination ability (which is well charted – even on his home leave stints we had to document it every four hours).  They are keen to know whether he can wee and whether it is dribbling out (that is, with no bladder control) or whether he can allow the bladder to fill and then use the bladder to contract and pass a wee properly.  They will then do the “tap” test (imagine John Cleese in “Fawlty Towers” checking the walls for hollow sounds) to see whether the bladder is empty (sounds hollow) or full (sounds hard).  If Will is fine after 1, 2, 3, x, y, z number of days, he can come home.  If not, further tests will be done, like another contrast or an ultrasound.  Problems could be due to swelling after surgery, dodgy bladder after the blockage in the urethra made it overfill and then leak or burst or something, or debris from the zapping of the valve in the urethra.  All of this info was given to me by Dr Chan (the woman) in less than 3 minutes – fantastic.  I make no comment on the ability of men vs women to pass on vital information!

 

So, that’s about it.  When Harry gets home tonight we will put some pictures of his home leave on the blog.  The kids had a great time with Will, Jack read him books and Cleo sang him songs.  Both were very helpful running and getting me things when I had my hands full.  AND, Jack managed to get out of being held in at recess time (because I hadn’t signed off his homework) by thinking quick and saying it was because I was so busy now Will was home for a few days that I had no time for such things.  His teacher fell for it, and it’s true I did forget but good on Jack for coming up with the excuse!

 

OK, I’m off to be patient, will know more this afternoon so do check in later!  Love Jules.

Please pray for Isaac now

Here is a note from Sonia regarding the time for Isaac's operation. Please pray for him, his operation is coming up in the next half an hour (from when I posted this of course). Don't forget you can always go www.soniaandjong.blogspot.com for updates. Dear all, Just a quick update on the start time of Isaac's surgery. We confirmed that his surgery will start from 9:30 am to 10:00 am Tokyo time tomorrow, which is:-10:30 am to 11:00 am Sydney time- 8:30 am to 9:00 am Hong Kong time- 8:30 pm to 9:00 pm Wednesday Eastern Standard timeYou can also check the time conversion on here - http://www.worldtimeserver.com/time_converter.aspx?f=JP We don't know how long the entire procedure will take but it might take up to 4 or more hours. Also, we have been told that so long as Isaac is stable, we can spend a lot more time with him than usual because its his day of surgery so we might be in NICU for a while and may not be able to update promptly or receive calls while we are in there. But we should be able to post something before we are allowed into NICU for the long visit.Isaac's CRP/infectious score was 0.1 today, which basically equals zero - praise the Lord! However, his eye check up today confirmed that he has Stage 2 ROP (Retinopathy of Prematurity). Isaac will get another eye check up next week to see if he needs laser surgery for his ROP. Laser surgery is a much, much simpler surgery than the heart surgery Isaac is getting tomorrow so we are not overly worried. But please do pray for his vision and his eyes as well.We have a very early start tomorrow so I will sign off for now. We really appreciate all of your prayers!God bless,Sonia

Home for a week - and then.....

After the successful operation on Friday, Will is at home on his second stint of 'home leave'. The current plan is for him to return to hospital on Friday to have the catheter out, then.... Well our prayer is that he will come straight home. However, at this stage, there may be a yet to be determined period of time while they keep him in on observation to ensure everythings functioning ok before they let him come home for good. We cannot wait. The catheter has been a right pain in the bottom. He pretty much has to stay at home while he has it in, which makes it difficult for Jules. Its also a little stressful always trying to make sure we don't bump it in the wrong way, keep the kids away from it, etc. In one sense it was actually a tad easier when he was in the hospital - however we're very happy to cope with the minor discomforts to have him home. We're still continuing to pray for baby Isaac (and for his parents Sonia and Jong). He is to undergo quite serious surgery on Thursday 22nd June. www.soniaandjong.blogspot.com

Found it

We've just spoken to Dr Chan following Will's surgery. His opening remark to us was "he won't be going home on Monday". Its fair to say that we weren't really sure how to take a comment like that. Anyway, after a little further conversation we determined that Will was in fact ok. The prognosis is that they did indeed find evidence of a valve in the Urethra. They used an electrofied cathetor to burn this evidence away. They also analysed the bladder and found evidence of previous trauma, but no evidence of a hole. Given the nature of the operation, Dr Chan wants to keep Will in hospital for 1 more week with a cathetor in to allow the area repaired to recover. On a little further questioning, it would appear that we may be able to take him home next week sometime for further home leave. In terms of longer term, there may be future problems with things like toilet training given the prior damage to the bladder. Given they are unable to completely cut out the valve, there may also be a future requirement to do further work, dependant on how he goes in the next few months / years. The very good news is that, despite some earlier concerns, Will is able to breathe on his own. No need for a ventilator. So I guess we finally have an answer as to what caused the problem. No idea why a valve developed and when, but at least we know what the problem was, perhaps a little peace of mind. Thank God for his goodness to us in providing such highly skilled Doctors in a very high quality hospital to look after Will. We are now looking forward to a speedy recovery, and a permanant trip home. We're now sitting in the elevator well waiting for Will to come out of recovery. They could do with some chairs as the window sills aren't the most comfortable

Friday's nearly here

Well, I was right. This week has flown. Tomorrow is Friday and Will is all set for his cystoscopy and the general anesthetic he'll need to get through it. I spoke with the surgeon and anesthetist today and I think I had a few questions answered. Its often a little hard to tell whether I have gained more knowledge at the end of some of the conversations! The summary is: Will has to stop eating by 10am in preparation for a 2pm start time (not too bad as he may even sleep that long and I was anticipating a 6 hour fasting period, I am allowed to stay with him from the special care room all the way to the theatre and up until the anesthetic goes in (a great blessing as I didn't expect to be allowed near him), his procedure lasts for somewhere between 15 and 45 minutes depending on what they find, and then I'm allowed back in to the post op area to wait for him to wake up. The procedure will look at two things, whether there is a valve in the urethra that has been held open by the catheter (if they find one they will zap it with some electric current so it doesn't grow back - Jack's concerned that they may fry the urethra itself but I reassured him the surgeon knows what he's doing and God's in control)and the condition of the interior of the bladder (the roughness or smoothness - technical terms - will indicate how much damage occurred during the initial blockage and therefore how many problems Will may face in the future - things like incontinence, urinary tract infections were mentioned). Depending on what they find, Will has to stay another few days post op after the catheter is out but we anticipate his home coming to be anywhere between Monday and Thursday next week. Still being patient... Please pray hard for the little tacker around 2pm tomorrow arvo, pray for Harry and me too, that we trust in God, not in man, and know that He has a plan for Will. Looking forward to updating you all tomorrow night when we may finally have some answers, Jules.

More photos, a video and a postcard too!

Good evening. I had a lovely day with Will today. He was so relaxed both this morning and tomight. He's taking feeds a little better it would seem, a little more rigorous in the sucking even though he's often asleep for most of it. We had some nice little chats and I took a video of Will's faces he pulls as they are many and varied. His tummy is all but normal now and he has put on the weight he lost over the weekend (I think due to being entirely breast fed and therefore without the fortifier suppliment they add to the bottles). The other great news is the culture from the catheter bag came back and there is no sign of bacteria, which means the problem before was with the bag (no surprises there as 17 days of being soaked in wee is bound to do that to any bag!) and not with Will. They will still keep him on antibiotics until Friday though just so he doesn't come down with anything before or in fact during the procedure. I was trying to work out a few details of the operation today, asking when I'd speak to the aneasthatist, when Will would have to stop eating and when they would give him a drip. No satisfactory answers I'm afraid but I think I will meet with the surgeon and anesthatist tomorrow and they'll be able to tell me I'm sure. Harry has had a busy few days at work and has been getting to the hospital just before closing time. This actually worked out well last night as he got to give Will his 8pm bottle feed. Harry tells me he knocked it back in 10 minutes flat, reminding me of a comment from a waitress once to Harry after noticing his empty plate - "Where did that go? Do you inhale your food?" - to be said with a lilting Irish accent. Obviosuly there are a few new pictures today - some lovely ones of Will I think, a video that is probably too long, sorry i got carried away, a photo of Jack with his mohawk at 9 months of age (watch the video for the reference) and a postcard we received from Will's Uncle Ben (my brother) and soon to be Aunty Wendy who are travelling in France. Uncle Ben wrote that he hoped Will was all sorted soon and back to proper performance as per the picture! Enjoy the pics, have a great sleep for those in HK and Oz, time for lunch in the UK and Ireland and good morning to those in the US! Love Jules.

Request denied

For those who are logging on to see if Will has had a reprieve and can come home again, I'm sad to say our request has been denied. The pediatric surgeon is quite conservative and is a little nervous that if he lets Will go home again the chance of the catheter coming out or becoming infected is too high. I can appreciate where he's coming from and he only has Will's best interests in mind but it was hard to hear "no". In some ways it is harder having had him home. This sounds odd I know as we should just appreciate the time we got to have with him over the weekend but until then Will had been "Will at the hospital" not "Will, part of the family, in his own bed". It is hard to walk past his change mat or bassinet and do a double take because he's not there. Still, it is in his best interests and I am praying this week will fly and he'll be home again in no time. I'm back to the routine of expressing, driving and feeding. Please continue to pray for the Jack and Cleo as I will be around less for them. They are still handling things extremely well, not whinging and being very understanding when we tell them someone else is picking them up or taking them to x, y or z. I am so thankful to God for their mature response to Will's demands on our time, especially since they are both going through the emotional difficulty of having a brother in hospital. God is being so gracious to them and lifting them up every day. They too are leaning on Him, praying regularly, not just at bedtime and realising He can help Will and them. OK, must go and express, aren't you all envious of my new and exciting routine? I know you are, you can't deny it! Take care, love Jules.

A hole in the house

After a wonderful weekend with Will at home, we've felt a real hole in the house today. We dropped Will off at the hospital this morning and it felt very odd. To bring him back despite him being so healthy (seemingly) was very strange. To make it more difficult, a new baby has been admitted into NICU over the weekend. This baby is extremely sick, and has pretty much every form of life support possible. Jules and I both quietly prayed for that baby this morning. As a result, they have moved all the other babies in NICU out into the special care room. The machinery etc. that the new baby is on is very noisy, so to minimise impact on the other babies they've moved them. To make the situation of leaving Will behind even more difficult, the nurses started to ask Jules this afternoon why she didn't extend the home leave. Asking her if she was too tired to look after him! Clearly not the case as we would desparately prefer to have him home. The nurses will ask the Doctor tomorrow, and, who knows, we may have him back again tomorrow for another few days. That would be a great (and very unexpected) blessing. As mentioned in my last post, having Will home was a great thing for the kids as they really started to relate to him on a more personal level. They were a little sad this morning going to school knowing that he would be back in the hospital in the afternoon. Some piccies of the Kids, 2 off to school, 1 off to hospital.

A great weekend

So far so good on the weekend at home. In some ways its quite restricting to have Will home because, due to the cathetor, we're pretty much landlocked at home. However, that is a small price to pay, and the weekend at home - including a relatively sleepless night last night, has been fantastic. I could say much, but here's two pictures that speak for themselves. How great is it for Jack and Cleo to be able to meet their little brother. How great is it to give him a bath at home. We're so blessed. Enjoy.

No problems on his first night at home

Last night was Will's first at home. He slept amazingly well, such that Julie had to wake him up during the night to feed him. We need to make sure he's eating every 3 or so hours because he is still small and needs very frequent feeds to keep his growth up. Hopefully the night time feed thing doesn't become a habit, but necessary at the moment. We had a lovely birthday dinner for Julie. Our first dinner with us all together. A quiet relaxing evening with everyone at home. We marvelled together over the miracle the God had done for us to make it so. Outside of asking God to heal Will this was the only very specific prayer that we prayed, that Will would be home for Julie's birthday. Kicking myself for not adding "and that he could stay home" .... Oh well - need not be fussy.

A weekend at Turnies

Will is home! For the weekend. Not much to say in this update apart from letting you know that the systoscopy will happen next Friday. Will will be out for the weekend, and go back into hospital on Monday, and most likely stay there until after the procedure. Lots of pictures and a couple of vids of a home coming.

A bit of a dark one of him sleeping. Not even a black rainstorm was going to keep him from coming home. In the house. Isn't Cleo happy to see him. Jack will be too I'm sure when he gets back from school. A pretty good birthday present 'eh.