Monday Morning 10:45 AM - A Josiah Update

Josiah @ 10:30 AM, Monday April 30th)
...still, tagged & tubed

(Josiah @ 10:30 AM Monday, April 30th)
... his handsome, balding face

Josiah is back in the NICU, in the same room (41) but in a different spot, a sperated side room where he can be watched and kept isolated for the next few days.

Josiah is well doped, though he did try to arch his back on his way back from the OR (catching the nurses by surprise, but he didn't do any harm to himself!) Josiah will be on IV for at least the next day, but may be able to get back on milk tomorrow. As long as Josiah is sedated like this, he will also be on a ventilator since he isn't alert enough to breathe on his own yet.

Everything has gone well up to this point. It's hard for Marie and I to adjust to the fact he'll have this appliance attached to him for a while, but it's so wonderful to see his full face again.

Prayer requests: that Josiah will heal fully and quickly, that he will be able to breathe on his own when that time comes, that the community nurses will be in place for when we are ready to go, for strength for Marie and I through these days, and that Josiah will be protected from harm, injury, viruses and infections now and throughout his time on the 'trache'. I have mentioned it before, but Josiah is now much more vulnerable to viruses and infections now that he's on the trache. This is part of the reason there is a 15% risk of Sudden Death for those who live with a trache. Yeah, talk about living under God's mercy.

We may post later in the day, but who knows. Right now we're just adjusting. In ending, I'll post the lyrics to a song that's been on repeat for me. Kudos and back-slaps for anyone who knows the band!

I know one day, all our scars will disappear,
like the stars at dawnand all of our pain,
will fade away when morning comes

and on that day when we look backwards we will see,
that everything is changed
and all of our trials, will be as milestones on the way

and as long as we live,
every scar is a bridge to someone's broken heart
and there's no greater love,
than that one shed his blood for his friends

on that day all of the scales will swing to set all the wrongs to right
all of our tears, and all of our fears will take to flight
but until then all of our scars will still remain,
but we've learned that if we'll
open the wounds and share them then soon they start to heal

as long as we live,
every scar is a bridge to someone's broken heart
and there's no greater love,
than that one shed his blood for his friends

we must see that every scar is a bridge,
and as long as we live we must open up these wounds
when some one stands in your shoes and will shed his own blood
there's no greater love. we must open up our wounds

Carried by God's Graces.
- Andrew, Marie & Josiah

Monday Morning 9:40 AM - A Josiah Update

The ENT doctor just came in to tell us that everything went really good with the surgery. We haven't seen Josiah yet, but he'll be back soon.

We also find ourselves back in the NICU. Unfortunately, they are full to capacity in the ICU with three long-term trache cases and can't take Josiah over there. Josiah will still receive the staff and care he needs, but he needs to stay in the NICU. It's strange: we are frazzled with the move/not moving uncertainty, comforted by the fact that we are back in a familar place, yet have concern regarding the quality of care Josiah will receive outside of the unit that usually cares for these situations. But God is in control, right? At this point, it looks like Josiah will remain in the NICU for at least a month before he is transferred to the ICU, if he is transferred at all.

I hope to take a couple pictures of our man so that you can see for yourself how he is doing. Stay tuned.

Thanks for your prayers! God is faithful and near, strengthening his followers. Our future is so uncertain and daunting, so we just live day by day.
- Andrew, Marie & Josiah

Monday Morning 8:05 AM - A Josiah Update

Josiah just went into the OR. The whole procedure should take about 45 minutes. I'm going to grab a coffee/breakfast so I'm not a wreck when Josiah returns. I don't know how I'm going to respond seeing him a tubed and wired, completely limp. It wasn't easy being with him this morning and kissing him as he went into the OR. There were lots of tears.

Watching & Waiting.
- Andrew, Marie & Josiah

Monday Morning 7:30 - A Josiah Update

It's 7:30 AM and anathesiology hasn't showed up yet, so I'm guessing that Josiah will be going into the OR later than 7:45 AM. Of course I'm no expert, but I'll try to post when Josiah does go in.

Marie & I have been with him since 6:45 AM this morning. He's been mostly awake, but for some reason generating a lot of secretions. Maybe it's because he hasn't been fed since 4 AM and he's salivatating in anticipation :)

Well, I'm going back in.Thanks for your steady prayers.
- Andrew, Marie & Josiah

Sunday Evening - A Josiah Update

We got an OR time: 7:45 AM.

So, bright & early Josiah will be heading to the OR. Immediately after, he will be transferred to the ICU. Yes, we're leaving the NICU and that will be a little hard; well, really hard for many reasons. We lose our friends, we enter a new environment with a different layout, new staff, a less family-friendly place (no common lounge, computer, TV, etc). So yeah, it's going to be hard but we have to focus on the fact that it is best for Josiah. There the nurses are already trained in trache-care so he'll be in the best hands possible.

Marie had a good time with Josiah here today. She was able to give Josiah a bath and then cuddle with him for 3 hrs. That's a new Josiah marathon record ;)

Simple directions to the ICU (future reference for potential visitors):
Enter at the Main Entrance for Children's Hospital and head towards the NICU. Before you turn left for the NICU, turn right (look for the ICU sign). Go down the hall and follow the sign to the right. Look for the ICU sign and blue door. You have to phone in because there isn't a reception area to greet you. If we aren't in with Josiah, I imagine I'll be hanging out in one of the waiting rooms along that hallway, or in the NICU because it has TV & computer (and all our friends).

Thanks for our prayers. It is my prayer that God will lead his people to pray throughout the evening, day and week for our Josiah. We pray for a speedy and full recovery, and that Josiah will be fully healed.

I'll try to post again in the morning, but since I'm not near a computer any more I can't offer any promises :)

Thanks for the Love.
- Andrew, Marie & Josiah

Sunday Afternoon - A Josiah Update

Hey Crew

Josiah continues to be alright. It's hard watching him sometimes because it appears that he doesn't enjoy being groggy - who wouldn't eh? Josiah is given chloral whenever he can't stay asleep and gets angry; it isn't exactly every 8 hours, but whenever he needs it. He gets all stretchy and frustrated when he tries to wake up because the sedatives are working against him and his desires. Right now they have him on continuous chloral (a re-dose every 6-8 hrs) so that he's all relaxed for tomorrow morning.

If we are given a time for Josiah's surgery, I'll post it as soon as I can so that you all can be in the loop. We are so in wonder how you all have prayed so faithfully and fervently for our son. I can't think of anything in my life that has been given so much prayer by so many people. We are grateful. We have been asking God for Josiah's safety through the surgery and the following week as he body heals. We are praying that the surgery will be as successful as possible, that Josiah will not be frustrated by his time under paralysis and that he will recover happily. We are also praying that God doesn't forget of Josiah's epiglottis troubles and the healing he needs there. And we ask that God will use us in whatever way he seems fit, and that Marie & I will have the strength, courage, and patience we need during this time.

By the way, Josiah has passed the 9 pound mark! Yup, he cruised by 4100 grams earlier last week.

Marie has returned from a great and refreshing time in Calgary. I'm going to be heading back into Van tonight, but a little after the game starts so that the traffic is better :)

In God's Rest.
- Andrew, Marie & Josiah

Early Saturday Morning - A Josiah Update

Yes, I should be in bed. I'm on my way.

Crisis has a way of seriously messing up one's biological clock. Never mind the constant flow of caffeine: anxiety, odd eating patterns, poor sleep, and plain ol' fear can thrash any attempt at a sleeping routine. None the less, I'm certain I'll fall asleep after I post!

OK, so here's what's new: Josiah will probably have his 'trache' surgery in the AM on Monday. On Sunday we'll be given a more specific time, and his pre-op schedule begins @ 4 AM Monday.

Further, Josiah's G-Tube is scheduled for May 8-9th (can't remember the specific date). This is kinda sucky since it means Josiah will only get 1-2 days of alertness after being paralyzed post-trache-op before he goes under again for his second surgery. BUT, God is good and will make good out of it. It would be nice if the surgeries were closer together, but maybe it just means that Josiah needs a little more time to heal from his trache surgery, or that it could be dangerous operating while paralyzed.

After an episode yesterday, Josiah has been put on continuous feeds. Yesterday he aspirated (stomach reflux after a feeding) which sent him into a nasty brady moment. It may be that his muscles at the top of his stomach are getting tired/irritated/etc and that he can no longer contain a full feed in his stomach without potentially harming himself. So Josiah's food now trickles into his stomach slowly throughout the day by a pump that applies pressure to the syringe containing the milk. Nope, we don't like it - com'on, wouldn't it just bother an infant more if he can't experience a full tummy?! - but if it's for his best we just have to do it.

I was able to hold Josiah for an hour tonight. He was groggy awake for most of the time (the nurses are continuing with his chloral as he needs it so that he's relaxed for Monday), but it was really good.

Marie has made a spontaneous trip to Calgary. She'll be flying out tomorrow morning. Her brother is graduating this weekend and it is an opportunity to be with family and be distracted from all the pain, questions, and confusion in life. You can really be praying for her, that she'll come back with vigor, faith, hope, and a clear and truthful understanding of who God is, as well as general safety and a healing peace upon her as she is away. For myself, I'm exhausted - more emotionally than anything - frazzled, strong in God but stuck in some serious fog. It ain't easy balancing work and a child in intensive care, and of course my mind is filled also with concern for Marie. You can pray that God will protect our mind and hearts from lies, and that we can fully trust God with our hearts and our Josiah at this time. I can totally see how so many marriages are dissolved after times of crisis like this; thankfully we have Christ, but that doesn't exempt us from the trials and the tension.

I've got a wedding to attend tomorrow in Richmond: I'll probably still go.

Aaaaaaaaaaaaaaaaaaaaaaand, it's time to sleep.

May God be near, real, and trustworthy to you.
- Andrew, Marie & Josiah

Thursday Night - A Josiah Update

Hi Guys

I'm just putting something up, though there really isn't much to say. Josiah has been coping well since his moment in the OR. He'll probably be weaned off his chloral (his medicated sleeping aid!), but the nurses will still give it to him as necessary. I was able to hold Josiah this morning for 2 hours straight (that guy still sleeps like crazy when he's in my arms!). It's such a treat being able to hold our guy, but at the same time it's hard because, well, because it's not normal. Holding Josiah shouldn't be a big event, it should be the norm, but it hasn't been our norm. Oh well, it will be better when he's able to go home.

You can pray for Josiah as he prepares for surgery on Monday. At this point they haven't given us a time, and it looks like the G-Tube will be taking place on a different day down the road (the doctors aren't able to coordinate a time together). You can pray for us parents too; while there is no way we could imagine or match Josiah's frustration, pain, and suffering up to this point, I think there is an emotional and spiritual toll that us parents take that he doesn't have to bear. It's been tough, really tough. We have to drudge through a lot of questions and feelings these days, and it's hard to keep our heads and hearts clear. I suppose this is normal for people facing such trauma and uncertainty, but that doesn't make it any easier.

Well, I'm late for leaving for Vancouver. I should really be going. I wanted to tidy up my desk here in the office (it's more of sty than usual!), but I'm don't have the headspace and I'm only delaying the inevitable: another 60 minute commute. Oh bugger.

Random: speaking of all things bugger, have you seen the trailer for Pirates 3 yet? Fascinating! Every character is back for this one, and I'm getting quite impressed because it looks like the directors have pieced quite the 3-parter together.

May you find God more and more faithful, increasing in kindness and grace each day. It is certainly our hope, our prayer, and our only chance of getting out of this chaos with any amount of sanity.
- Andrew, Marie & Josiah

Wednesday Morning 11:30 AM - A Josiah Update

(Josiah @ 9:20 AM Wednesday, April 25th)
... groggy, yet awake and hungry! ... our beautiful boy with a nasty haircut :)

I thought many of you would appreciate fresh pictures of our Josiah. These are taken just minutes after he returned to the NICU. Right now he's resting again, and I'm going to go back in a stay with him for a while. And I'm exhausted, so exhausted. Emotions are wearying, crying is both refreshing and taxing, and despite all that has happened today I think I'm going to sleep pretty solid this evening.

Further prayer request (beyond his surgery and the healing of his epinglottis): pray that God will set aside community nurses in Abbotsford who will be able to provide Josiah with the weekly care that he'll need. This could be the one thing that prevents us from leaving the hospital as soon as we'd like to!

Grace & Peace.

- Andrew, Marie & Josiah

Wednesday Morning 11:00 AM - A Josiah Update

Josiah has returned from the OR and he is still on the respirator. He is scheduled for his 'trache' and possibly also his G-Tube for this coming Monday.

I'll post a brief review at this point, and later in the day I will add more thoughts. At the top of the list is the ENT's realization that Josiah's difficulty with breathing all stems from his epinglottis. Interestingly enough, it is not because his epinglottis is bifid - his epinglottis actually has never looked better and the ENT was suprised to see that it was improving since he last scoped Josiah. But the epinglottis is floppy and can't stay open to allow air down his airway.

This of course is extremely hard to handle and through our tears and questions we do cling to the good news that we've heard today. Other than his epinglottis, his airway looks good: it's wide enough, the tracheal malaysia is not a problem (floppy trachea), and there is very minimal build up around his chords from being on a respirator so long. Also, it is encouraging to consider that since it is clear that the epinglottis is the source of Josiah's problem, we can be hopeful that there isn't a neurological problem that isn't impairing his ability to breathe.

To us, it kind of makes sense that his epinglottis is a little floppy and lazy. Imagine having your epinglottis propped open for 8 weeks because you can a breathing tube keeping it permenantly open. Wouldn't everyone's epinglottis be a little floppy, especially if you consider that Josiah is an infant and perhaps hasn't had the time to develop him epinglottis muscles. Think of wearing a cast for 8 weeks: your abilities are seriously hampered when that cast finally comes off!

So, now we wait. Like I said, the surgery is scheduled for this coming Monday. We will need your prayers during this time, especially since there is an added risk of danger when 'traching' an infant. The ENT believes that in a year we will be able to re-evaluate Josiah's condition and take another look at his epinglottis.

We have faith that God will still do something amazing for our son. After our many prayers and tears when we heard the sad news, we are still able to smile and thank God for his goodness. Thank you to everyone who has prayed on our behalf today. There are no words to communicate how deeply we appreciate it.

Josiah is well, awake, and starving for some food. If you feel lead to continue praying for Josiah today, please pray for his surgery, but also that God will do a wonder with his epinglottis. We are so excited and encouraged to hear that Josiah's airway has demonstrated signs of improvement, proof that God is good and at work.

Until my next post, may God's Presence, Peace & Power be near you all.
- Andrew, Marie & Josiah

Wednesday Morning 8:30 AM - A Josiah Update

Josiah went into the OR about 15 minutes ago, and we've been since praying, singing, laughing, and eating as we wait for our miracle to return. We have been blessed by the company of Marie's parents (Darcy & Nola N.) as well as a dear family who has been close to us through this time, so close they were in the delivery room with Josiah (Cindy, Alex & Kelly S.)

I'll post again when Josiah comes out. Praise God for his goodness! God is not dead nor absent, and his power is just as mighty as it was when Jesus walked the earth!
- Andrew, Marie & Josiah

Tuesday Evening - A Josiah Update

Well, here it is.


Tomorrow (Wednesday, April 2th) @ 8:15 AM Josiah is scheduled to enter the OR for his 'bronch' scope and trial extubation. Josiah has been receiving his 'dex' today (steroid to help open his airways) in preparation for this big day. The ENT doctors want to have one more look down his throat to make sure there hasn't been any damage over the past two weeks. Personally, I feel that such action is a little futile since Josiah has been demonstrating he has a large leak. We'll see what they say tomorrow before he goes in. After the doctors have a look down his throat, Josiah will have about 30 minutes to demonstrate that his breathe without the assistance of a respirator.

I firmly believe that Josiah won't be breathing alone: he'll be breathing by God's power. After all, his name does mean "The Lord Supports". I've been feeling willies all over today when Marie called me to relay the extubation time. And this are different from the willies I was feeling when the Canucks were winning last night! I catch myself wondering if it was a bad thing to feel nervous leading up to such a big moment. But then I thought (or God put the thought in my head - which ever is more accurate!) that if I was a regular Joe approaching Jesus in Bible times I would DEFINITELY be feeling like I do now. I just imagine what it would be like walking right up to Jesus, the thoughts rushing through my head, the whole rainbow of emotions that I would be experiencing. It would be unreal! So I don't feel bad about the willies, or the butterflies, or whatever I'm feeling right now. It makes me human.

So, we're praying that Josiah will not need his respirator to breathe, that God will enable him to breathe without mechanical assistance. We are also praying that God will use this miracle to create believers out of those who express unbelief. We are praying that the OR will be filled with God's peace and that the people present will marvel at his work, his wonder and his mercy. God wants Himself to be known! He wants His works to be displayed! He wants to create believers out of his created!

When Josiah comes out of the OR breathing on his own, the day is far from over. We request your prayers throughout the day since the following 24 hours are big for Josiah. 6-10 hours after the extubation Josiah's steroids will wear off and it will be at that time that the doctors will be intently observing him to make sure he can make it. So please, continue to offer us your intercessions throughout the day and night so that our little man will be protected, safe, and peaceful. Pray also for the next 14 hours as Josiah will need his sleep and strength for tomorrow.
Marie and I have been receiving wonderful encouragement throughout this week, and we appreciate it SO MUCH because our minds and hearts can become quite clouded and confused during these periods, but your words and God's promises help us to keep our focus on Jesus.

I will - as best as I can - post through out the day tomorrow to keep everyone up to date on the latest so that our prayer requests can be most specific. Yet, I'm not worried: God doesn't need me to keep my blog updated so that you know what to pray for! Who needs a blog when you already have the Holy Spirit prompting and guiding you! Be attentive to His Spirit tomorrow as your prayers go up to God.

Thanks again for all the love, support, and prayer you have sent up on our behalf. Our lives have been forever changed, not just by Josiah or this experience, but because of how you all have shared your hearts with us. We are greatly indebted, but in God's family we know there are no outstanding debts. This is what family does and we bless you and praise God for it.

In God's Generous Peace, the Source of Faith in Storms.
- Andrew, Marie & Josiah

Monday Evening - A Josiah Update

Hey Folks!

OK, well Josiah self-extubated again last night. My goodness. Yes, he coughed hard again to make it happen, but Marie also mentioned 3 times that his face tape needed to be re-done and no one did anything about it. At least this self-extubation/re-intubation wasn't that tramadic: it was quick and the breathing tube (3.0 mm again - good!) went in smoothly.

Josiah has been resting LOTS today: the chloral has been helping, but it's also quick obvious that the smaller tube causes less irritation for Josiah. He doesn't brady/d-sat as often or as bad when he is suctioned, and he doesn't spontaneously brady either any more. Good stuff. I was able to hang out with him ('cuddle' in girlie terms!) for about 90 minutes earlier this afternoon and slept for pretty much every minute of it.

We haven't received an exact time for Josiah's appointment in the OR. We'll post it when we find out. Josiah will receive steroids tomorrow to get him ready for the trail extubation. We are praying that the mood of the OR is peaceful on Wednesday, that the doctors will be suprised with Josiah's reaction to breathing on his own. We are praying that the Lord will support him and heal him (according to the meaning of his name!), and we're praying that God will create believers out of those who are not giving Josiah (or God for that matter!) a chance.

We don't like giving God a timeline or deadline when it comes to answering prayer requests, but as far as things look now Wednesday is Josiah's last opportunity to breathe on his own. I was encouraged yesterday as I was reflecting on the miracles of Jesus throughout the Bible. As far as I can tell, Jesus never denied anyone who asked for healing. The only instance that I can think of is Paul asking God three times to take away his 'thorn of the flesh', which is fairly ambiguous as to what exactly that 'thorn' is.

I've been thinking about Josiah's name ("the Lord heals/supports") and was reminded about some of the children that were born to the prophets in the OT. It's interesting that God told Isaiah for example to name his children as a sign to the people. I remember that 5 days before Josiah was born, Marie and I were settled on naming "Pender" Josiah if our child was a boy. We at the time didn't recall what Josiah's name meaned, but were immediately comforted, realizing that God gave us the name Josiah for a reason. And now Josiah stands as a sign to God's people: "The Lord heals". I really sense that God is at work (our as CS Lewis would put it, "Aslan is on the move"!), observing how he is drawing His people together at this time, having them pray and reflect on His promises, and doing wonderful things in the lives of people we know. God is so good, and we wait for his promises to come true.

We are greatly and know we are blessed by the fact that Josiah hasn't gotten sick or infected in anyway. We are also grateful that Marie and I haven't gotten sick at all. God does protect and provide, and we also believe that God can and will heal.

I'm getting pretty distracted by the hockey game right now, so maybe I'll post something before we go to bed tonight.

In God's Love.
- Andrew, Marie & Josiah

Late Saturday Evening - A Josiah Update

Marie has dashed down the hall to make some popcorn, leaving me the opportunity to post an entry and make amends for not posting last weekend!

You could really title our day "Welcome to Limbo". Well, you could also call it "God is Really Good" and "Josiah Is Such a Really Cute Boy We're Absolutely in Love With Him". Limbo: the doctors did nothing today about Josiah's tube, mostly because they couldn't really decide what to do. An ENT doctor did drop by and said that if the 3.0 mm causes any problems, they'll just replace it with another 3.0 mm. We know that Josiah's extubation is regarded as 'elective' in the OR, yet we're trying our best to get a time for Josiah's extubation on Wednesday so that everyone can pray specifically. So stay tuned for that. Obviously if there is an emergency case that comes in the OR that day it could bump Josiah's slot, but hey God's in control and he'll answer our prayers. Rob told me today that our church is going to be open on Wednesday for drop-in prayer for our little guy. We are blessed; not many babies in the world get this much attention, support, and prayer.

Josiah had a pretty good day. Slept lots, though when he is awake he does have a lot of secretions. Our evening nurse is a neat lady. She's big into stimulation and went off to get him a bunch of crib toys tonight to maintain his interest when we aren't around. Pretty sweet.

Thanks for our visitors today: Christina, Kevin & Dana H., and Luke & Kari W., Janice & Leanne D., and Andrea.

Time for beddy-bye. Blessings, Peace & Grace.
- Andrew, Marie & Josiah

Late Friday Evening - A Josiah Update

Another late evening.

About 45 minutes ago the doctors were prepared to extubate Josiah's 3.0 breathing tube and put in a bigger one. Now it looks like they will wait until tomorrow. The doctor is concerned that secretions are building up on the inside and it be harder to suction him as he gets to April 25th.

This is hard to hear, especially when we consider how he's had such a hard time previously with the 3.5 mm. Also, our favourite doctor won't be the one putting in the tube, but hopefully it will be an ENT specialist and not the doctor who failed a couple nights ago.

Again, this is a demonstration of how things are out of control and how the odds are stacking against Josiah for a successful extubation (this is just the clinical side of my speaking). Obviously there will be an minor element of trauma as result of this extubation/intubation, but there is also the fact that the 3.5 mm is more irritating than the 3.0. Grrr. Dear God, please heal your son. We know you are willing and you are capable.

Another late night for Marie and I, and we're feeling so numb. I'm going to be in Abbotsford tomorrow (more body than mind/heart) but back in Van for the evening.

Josiah isn't sleeping as well as we would like with his sedative. The combination of his groggy state, secretions, smaller tube, and laying on the same side for over a day (he seemed to be ventilate better on one side) is more than enough to frustrate him and it's definitely not his fault. Oh Lord have mercy. Put an end to this and draw glory to yourself.

Time for sleeps. I'm so wasted.

Praise God for he is good; his love endures for ever. It knows no bounds, it cannot be stopped. God is near those who love him, who call on him and seek him. God loves all his creatures, and cares for each one. God knows us more than we know ourselves and he is not bound by the rules he has established. God is great and the only God, He is worthy of praise, reverence, and recognition. Jesus is with us. His Spirit keeps us strong. His Spirit binds us with those who also call out to God, and His Spirit calls out on our behalf when we don't have the words to speak. God is a God of mercy and goodness. He promises that He will listen to his loved ones and He will fulfill our requests. God wants to do miracles, He wants to bends the laws of this world, He desires to fill the natural with the supernatural and only waits on us to believe. We believe, Lord Jesus, we believe. Please heal our son.

- Andrew, Marie & Josiah

Friday Evening - A Josiah Update

Marie and I are heading out for a while (dinner and chill with some friends), but I wanted to post briefly that Josiah has been having a pretty good day. He continues to receive a sedative every 8 hours just to help him relax and encourage long periods of sleep. When he's been awake today Marie's been able to have a lot of fun playing with him. Josiah had some chest physio today also which he apperantly really enjoyed. Marie took some video so I'll be watching that later.

Josiah's self-extubation hasn't affect his timeline at all, so April 25th is still a 'go'. The head ENT stopped by for a quick peek at Josiah and seems to be encouraged (a very very little bit though ... I don't think he still has much optimism for Josiah). Josiah is now just on 'pressure support'. Basically it means that the machine isn't pumping oxygen into him at regular intervals any more. Josiah breathes on his own power, with the machine basically acting as 'standy by support'. This is great 'practice' for breathing on his own, and has some of the doctors encouraged! Of course Josiah still has the tube in his throat, but we're praying that Josiah will be able to breathe on his own and maintain his airway without a tube keeping it open for him.

Alrighty, time for some chow. Hopefully I'll be able to put up another entry before bedtime.
- Andrew, Marie & Josiah

Late Thursday Evening - A Josiah Update

Josiah @ 4:12 PM Thursday April 19th)
... a slumbering fan :)

Josiah @ 4:12 PM Thursday, April 19th
... Ladies Beware! Looking HOT in yellow! ... now if only Mommy
would allow Daddy to wear his yellow suit!! :D

Eh, really it's Friday morning :)

OK. So Josiah finished off his day on a positive note. Around 12:40 in the afternoon the nurse sedated him with chlorol hydrate (sounds like it could be a primary ingredient of chloroform!) and Josiah was able to have an awesome 5-hour sleep. When he woke up he wasn't bother or frustrated, and didn't automatically d-sat/brady like he had every time earlier in the day when he woke up. Josiah had 2 long awake stretches this evening (about an hour each time) and now Marie was able to get him to sleep again (finally). The nurse has put an IV in his head just in case a procedure was necessary, but now the IV will most likely be taken out since Josiah has leveled well.

There are some positives and some concerns with Josiah's smaller tube (a 3.0 mm breathing tube). Obviously, it's narrower so at times he has to work a little harder at getting air into his lungs. The doctors say that it won' be any easier for him to extubate himself (a relief in part), but I think also his secretions can accumulate a little quicker because the tube in narrower.

On the plus side, though, it seems that the 3.0 is less invasive and doesn't disturb him as much. Josiah is generating less secretions and doesn't spontaneously brady like he previously did. Josiah still struggles coming out of a suction (but really, anyone would when all the air is being sucked out of their lungs) but every time can recover himself (or receives a little oxygen assistance from the nurses/RT's). Josiah's awake times were fantastic today, another sign that the smaller tube is less of a bother. Also, he can get more air around his tube, which means we can hear him cough, wheeze, snore, and cry a little.

Thankfully, the ENTs say that the 3.0 is adequate for Josiah's size, and they would prefer keeping it in him unless he really needs to be extubated. We are praying (and asking!) that an ENT will be able to come by Josiah tomorrow to give him an assessment (since he's a week overdue for one!!). Also, a doctor also mentioned that the size of Josiah's 'leak' (ability to move air around his tube) is a good sign that he'll be able to handle an extubation (great!), but again befuddles us even more as to why the doctor last night wasn't able to intubate him with a 3.5 when there is all this extra room now!

So please pray for our Josiah, his safety through out the evening and day, his continued recovery from a tough day, and his preparation for his extubation. God is doing and will do a work in his body, I'm convinced of it. The Bible says Jesus will do what we ask of him (of course, Jesus doesn't say how and when he will but we'll leave that up to his timing!!). Pray also for the wisdom Marie and I need in asking the right questions and making the right decisions. Pray that we will continue to be able to work with the doctors and not view them as the enemy (which is really easy to do some days I tell ya!)

... and it's time for bed. G'Nite and God bless.
- Andrew, Marie & Josiah

Thursday Afternoon - A Josiah Update

Josiah is having a very bad day.

The doctors have decided to sedate him, for how long we aren't sure. Every time Josiah becomes alert he is very frustrated for some reason, remaining in long 'brady-s' and d-sating off the map, needing 100% some times. When he sleeps, he's fine so they are trying to keep him resting.

The doctors for the moment are comfortable with Josiah having a 3.0 mm-cuffed tube. It should be large enough for his size, but will re-evaluate if problems persist. We have had many conversations with doctors today and it's been very overwhelming.

Pray for us. We need wisdom, we need to be able to process all this and talk with clarity. Marie and I just need to take the time to rationally discuss all that's been happening and what we think needs to be done. One the one hand, we've had enough with this whole respirator business and want to go with the trache. On the other hand, the doctors see some encouraging signs and think that a 3.0 mm could allow him to have a successful extubation.

Again, please pray. This has to be short because I need to eat, caffeinate, and then get back to Josiah. Marie is going to get some sleep at Easter Seals.

Thanks for your care and prayers. Thanks to Jean B., Cheryl M., Jake L., and Leanne K. for visitng us today.
- Andrew, Marie & Josiah

Thursday Morning - A Josiah Update

Hi Guys

So, at 1 AM last night Josiah self-extubated again. The doctor who was on wasn't able to re-intubate him with his current tube (3.5 mm cuffed) so Josiah is now on a smaller one (3.0 mm cuffed). Obviously this is a concern to the doctors because essentially he is breathing through a smaller 'straw' (less oxygen getting into the lungs) and it's easier for Josiah to self-extubate again. With this smaller tube Josiah also has a greater 'leak' (he can move air up and down around his breathing tube) which isn't great because again, it demonstrates that it is easier for him to self-extubate.

BUT despite that concern, I was able to find some beauty in this: for the first time in probably six weeks we have heard Josiah's voice. Josiah is quite audible with his leak, and he's back to snoring again when he sleeps deep (something we haven't really heard much with his 3.5 mm cuffed tube), and when he cries and coughs you can actually hear him and isn't silent! Again, not a good thing but still beautiful and comforting to a parent.

So, we are waiting to see what the doctors want to do next. Obviously we are concerned with how this affects his timeline (ie. the planned trial extubation for April 25) and what steps they want to take over the next couple of days (for example, re-intubate him with a 3.5 mm tube and/or give him another 'bronche' scope to see if Josiah incurred any damage with his self-ex/intubation last night).

Josiah seems to be settling alright, but the doctors are willing to sedate him in case his is still irrated by the self-ex/intubation. It seems right now that he is unable to have a comfortable awake periods, which may be because of the smaller tube or post-intubation irritation. Thankfully, Josiah is getting very little secretions because of the smaller tube so a re-intubation of a 3.5 mm tube may go easier because there is less blockage and hopefully a narrower tube won't be irritating his trachea as much (allowing the swelling to go down).

Marie and I are doing as fine as we possibly can. We are pretty emotional raw right now, but holding together. Josiah is mostly peaceful right now (enjoying his breakfast and looking great in his yellow pj's). This one hit Marie harder than I this time, but that's how God made us. Next it'll probably be me who is the most emotionally overwhelmed. I know Marie is most frustated with last night's doctor's inability to intubate Josiah with a 3.5 mm cuffed tube. Previously the doctor we like (one of the many reasons we like him!) was able to intubate Josiah successfully twice on his first attempt.

Anyways, I'm sure we'll be posting more info throughout the day. Thank you so much for your prayers, especially for those who may have been praying for our Josiah throughout the evening. God is good and in control and loves us greatly.
- Andrew, Marie & Josiah

Wednesday Morning - A Josiah Update

Your wish is my command ...

Josiah @ 9:30 PM Tuesday, April 17th)
... quiet meditation

(Josiah @ 9:30 PM, Tuesday April 17th)
... sleeping beauty

Grace & Peace.
- Andrew, Marie & Josiah

Tuesday Evening - A Josiah Update

I think I've been trying your collective patience for too long. Time for a post!

Well, as you may have noticed a pattern forming, but on weekends I find it a little more difficult to put up a new entry. I spend a majority of the time in Abbotsford and with the long list of things to do, posting goes near the bottom. Anyways, enough blabbering: POST!

Josiah has had a decent weekend. He still brady's, he seems to have a lot of secretions, maybe a little more than usual because he seems to be having a harder time to sleep. He still throws up, but the way Marie and I see it, it seems that Josiah is spitting up all the mucus in his throat that he can't swallow (most of his throw ups don't have any food in it).

There hasn't been any new or recent meetings with doctors and nurses, but we do now have TWO primary nurses for Josiah AND an almost completed care guide for Josiah, which one of his primary's put together for him. Superb! Praise God for answered prayer.

Oh, and Josiah is seriously chubbin' out! I should post some recent pics ... Yeah, we're talking chunky jowls. Real beauts. New pics will come up this week, I promise.

Some days April 25th can't come fast enough. But then other days - being honest here - I dread it. Fluttering, teetering, it's the most surreal and foggiest and overwhelming I have ever been. On one hand I am through and through paralyzed, some days moving around like a zombie without any spark. Other days I feel as if I'm emotional bipolar, laughing hysterically at the beginning of a sentence and near-weeping by the end. Bizarre, yet not uncomfortable. Out of control, but not really scared. Numb, yet never experiencing such deep love. Most days I can't generate a simple clear thought, where the most minor task feels daunting and unattainable.

So here we are, shattered yet whole. I caught myself praying the other day in thanksgiving for Josiah's healing, even before it happens. Thought that was kind of neat. Probably a good sign that I'm progressing in faith. Thought something too: isn't it strange that we think nothing of praying that God would draw a non-believer to Himself, but we hesitate when we pray for something that may bend the laws of this universe (in other words, a healing). Isn't it harder and more miraculous when a cold, far heart comes to God than a physical ailment is healed? I dunno. Just thinking out loud. Made sense last night at 1:00 AM ...

Think it's time to head back to Van. Thanks for your prayers. Special thanks to those who are making sacrifices to devote more time with God on Josiah's behalf (fasting and et al). We are seeing everyday through new eyes, loving with new hearts.

In God's Love.
- Andrew, Marie & Josiah

Sorry, No Pictures still

Hey Team,

So today was good but it ended in a "bad cuddle" Josiah could not settle with the tube and trew up all over me (that was kinda fun because it is by first baby barf from my son. Wa hoo!!) but it would not get better after that. It is very discouraging to have 3 bad cuddles in a row.

BUT...

NOT FOR LONG! I will get to pick him up and hold him when ever I want in only 11 days! Yeah!! What a longin in my heart. I will hold on to this with a passion.

Shawna you are very right. I hope that I do not make you nervous but if you can read her comment under my last post. It is long but very encouraging and I want all of your to read it as we learn about God together and more and more about his goodness and love.

Cute things about Josaih today:
He loved his tub bath. He just chills. IT takes 4 of us in total to accomplish it but it is well worth it. ]
He is a baby still. Fights sleep... closes his eyes pops awake and sucks his soother and it continues.
He jerks himself awake while sleeping and throws his leg and arm up in the air.
He always want to look up at his forehead when he is awake.
He looks me straigt into the eyes. It is awesome.

So those are some of the things he does. Tara that is for you :)

And yes Leanne D. as you say my son will say "I love you mommy" some day.

Ok I smell really grose! Thats what the barf will do :)

Have a great day and read Shawnas comment.

God bless you all and take care.

Love
Marie Andrew and Josaih

P.S. If you could all pray for my mom and dad (Darcy and Nola Neufeld) they are in the process of selling there house and dad has 3 churches that are looking at him to pastor for them. Dad and mom need wisdom. Please band together for them also if you are lead to. Thank you very much.

Friday Night - A Josiah Update

Just the facts, ma'am ...

OK, I'm tired and got some work to do before I go to bed, so I'll keep this short (like you haven't heard that before).

The results came back negative on Josiah's heart 24-hour test. As far as the doctors are concerned, he has a good heart (I'll take that both literally and figuratively). Josiah's brady-s are directly related to stimulus (handingly, diaper changes, coughs, etc), and the doctors are uncertain if this is something that has developed over time or if it as a result of the cuff (NICU parents are in agreement that it is the cuff's fault!) So we are pleased and relieved with this knowledge. There is still a level of uncertainty: Josiah's brady-s may continue if he has a trache. All the more reason to ask God for the faith to pray for Josiah's healing!

Further, we have know a timeline to work with. The doctors have scheduled a trial-extubation for Josiah on April 25th; at this time he will also be 'scoped' to see if there is any interior damage from the last few weeks. THIS IS OUR TIME TO PRAY FOLKS!

As Marie shared with me, "Twelve days. That's it. But it's so far away." 12 days seems so long to wait when Josiah is responding poorly to this breathing tube, but doubt can set in when you realize that God has a 'deadline' now, so to speak. If God heals Josiah and enables him to breathe without the respirator - and praise Jesus we believe You can and will! - then Josiah's future is unwritten (but written on God's heart). If Josiah is unable to breathe on his own, he will go into a 2-hour surgery for his 'trache' and G-Tube on April 30th.

So there you have it. I really have nothing else to say, but I wanted to post this latest info so that you can pray more specifically through the next week.

Thanks for Colin & Carla R. for dropping by and Will & Doris B. for their surprise visit!

Existing by God's Grace & Peace.
- Andrew, Marie & Josiah

Friday Afternoon - A Josiah Update

Our apologies for leaving you all blog-less yesterday. Marie was planning on posting an entry last night, but Josiah decided to be a party animal and she hung out with him instead. Good trade, I say ... :)

OK, so what's new? Well, we're learning to leave things in God's hands. Man it's hard. All you want to do as parents is dictate the pace and direction of Josiah's care, but sometimes things are just out of our control. I suppose that this in many ways is a good thing because we have to leave things up to God now. I believe that God has given us these doctors for a reason. I also believe that we are supposed to trust God and not man. What dilemma eh?

The doctors want to give Josiah another 'bronche' scope to make sure nothing is wrong with his throat (especially since all these brady-s, d-sats, and throw-ups) after which Josiah will be given a trial-extubation. As parents we are concerned that the anesthetics and irritation from the scope will be detrimental to Josiah having a successful extubation. We have pleaded our case, but the doctors (including doctors we trust) have stated that this will not play into Josiah's ability or inability to breathe on his own. This morning we were told that if Josiah wasn't able to breathe on his own, he would immediately go into surgery for his 'trache' and G-Tube and we were like, "WHAT?!?!?!" That wasn't what was communicated to us!!! So Marie (since she's at the hospital now) is trying to figure out why they want to do that and what we can do instead. We are also trying to get Josiah some chest physio so that he can have most of his secretions loosed and cleaned out leading up to the extubation.

So that's the latest on that. We still have no results yet from Josiah's 24-hour heart monitor that was taken off yesterday afternoon. If anything does come up, it could delay his extubation plans (which we hope could take place next week).

So, pray for our boy, doubly-so if necessary! We want him to be able to breathe on his own and we cling to Jesus' words in Matthew 18:19-20, "Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them." There have been other Scriptures occupying our brain space these days, and maybe I'll post them on another occasion. We pray that the doctors will not be blinded or led by preconceived notions of Josiah's respiratory abilities (because they are extremely pessimistic right now) and we pray for God to be glorified. Marie and I will and do praise God no matter what course is plotted, but we have the faith (and are asking for the faith!) to believe that God can and will health Josiah. As Marie has put this week (she's been reminded this by God): God does miracles through time, but doesn't need time to do miracles.

Sigh. This is hard stuff. Any conversation with a doctor these days and I'm within seconds of squirting tears. So hard. We know God is in control and we know that he will accomplish his work despite our best and worse efforts of doing what we think is right for Josiah, but man oh man oh man this is rough and not easy to process ...

A few other things ... well, it was lots of fun hanging out with Josiah this morning. He's had a pretty good day so far. He slept a lot this morning (rare for him) but I am the "Mellow Master": I can put him to sleep like nothing else. I think it's the Haak in me. Marie and I joke that Josiah has two faces: the 'Haak Face' = mellow, relaxed, so 'whatev' you know? and the 'Neufeld Face' = bright red, intense, and all scrunched up with 101 wrinkles! :D Ah yes, well ... it's good to see that he takes after the both of us.

The BEST thing about being with Josiah this morning is that he LOVES holding my hands while he's sleeping. SO AMAZING! I'll have my hand kind of on his chest holding his soother in (because he sleeps like a rock with his soother in his mouth, even if he isn't sucking on it) and he will with both hands grab my hand/fingers or just lightly rest his handed on my mine. So cute! I'm pretty sure he knows what he's doing because every time I try to move my hand away he fusses and puts his hands back on me! And now all the women say "Aaaaaaaaaaawwwwwwwwww." :)

Today as I with Josiah as he was sleeping, I reflected on the Fatherly-ness of God. Being a parent I think brings you into a whole new realm of understanding who God is and how much he loves you. I just think about how careful I am around Josiah, doing my best not disturb him and finding just the right thing he needs in that moment to soothe him, and I know that God does the same and more for us everyday. Pretty incredible. I know God is watching over our Josiah and that he is loved.

I'm learning also that God always provides just what you need. In the first couple weeks of us being out here, I couldn't believe the amount of financial support we were receiving. It felt like way too much and we were feeling awful for taking all that people were giving us. Looking back now, though, it's obvious that God was using his people to give to our long-term needs, even when we didn't realize how long-term it would be. God is good.

I commented to Marie yesterday that this whole two months has felt like one long hand of Texas Hold'em. We were dealt a hand where the percents were poor and we had no choice but to go all in. It was clear to see that the odds were not in our favour, that it would be out of our hands and an uphill battle the whole way. And then as things got worse with Josiah it was as if we were seeing the 'flop', that the 3 cards turned up did nothing to help us and made it even more unlikely that we would walk away from the table victorious. Then came the next card, the 'turn'. Wow. Even worse. And now in the 11th hour (to borrow from Jesus' story) we are watching for that 'river' card to see if that will be our out. And dad, no I haven't been reading that 'poker' book yet; this analogy just came out of my head :)

Alrighty, this has been long enough. I still have work to do! Thanks to Aunt Betty-Lou H., Mike & Jen & Caleb P., and Lisa for stopping by yesterday. It was good to see you all!

Thanks for all your prayers. I can't wait to see who gets to be prayed for as intensely as you guys have been praying for our Josiah. Thanks.
- Andrew, Marie & Josiah

Wednesday Afternoon - A Josiah Update

Hi Again Everyone ... this one should be brief ...

Josiah is doing pretty well. He's back to having a familiar nurse today which is o-so-good. Yesterday was really tough: we had a nurse who could really care less. In short she was abrasive, had no crib-side manners, a really short fuse, avoided parents, an arrogant way about her, no compassion at all, and refused to listen to us, the experts with our boy. We've butted heads or had conflicts with nurses in the past, but we've always been able to make amends and work with them and more or less respect them and their ways too. Nope. Not this time; she was scary. She really scared and frustrated the parents of the other infant she was covering, so I'm confident in our assessment of her.

Marie was compelled to bring our complaints to the charge nurse (first time in 8 weeks we've complained about anything) and Marie said it best: "I don't care what you do, but we are not having that nurse again." It was the first time I have ever felt like telling the nurse to get lost and that I would take care of Josiah myself, and it was the first time Marie ever was scared about the care Josiah was getting. In the past we may not have like the nurse's approach, but we knew Josiah would be OK. Yesterday, we knew he was only going to make it by God's goodness and not by that nurse! I was within inches and minutes of creating a blog where moms and dads can brag about or blurt out the good and the bad of their NICU nurses. I even had a URL picked out in my head: NICUprosandfoes.blogspot.com! Catchy, isn't it?! But today is better and that's all I'm going to say about that! Case closed and moving on!! :D

Marie was able to sneak off to her parents' place for the night. It was the first time she has left Vancouver for a sleep since Josiah has been born. She did pretty well, I think! I was able to be with Josiah a while during the morning before I left for Abbotsford. The doctors are still not sure if there is anything wrong with his heart: maybe we'll learn more throughout the day.

Marie and I are praying about a controlled-extubation for Josiah this Friday. A doctor who is really good with Josiah is on that day and we're asking God if know is the time to give Josiah a chance to breathe on his own; maybe I shouldn't call it 'breathing on his own' as I should say ... give Josiah a chance to breathe by God's support and ability. So, if God's been speaking to any of you about that, let us know! :)

Also, I've been continually praying for God to keep people praying for our guy around the clock. If you wake up in the middle of the night with Josiah on the mind, pray for him and reward yourself with a cookie or some leftover Easter chocolate ... or paska if you have any in the house! You deserve it ;)

Thanks to my family for dropping by today (even though I didn't get to hang out with you): Uncle Dennis & Aunt Alita, Erin & Carley H., and Uncle Gord H. Hmmm ... have I missed passing props to anyone this week?

Thanks for keeping us in your minds and prayers, and making us a part of your daily routine. We will never be able to fully express our deep gratitude to everyone: there just isn't the words - nor the time - in this world to do so.

Thanks.
In God's Love.
- Andrew, Marie & Josiah

I thought it would be short...

Hi everyone!

A new baby just arrived and the mother is sitting here. Wow! I feel for her, it brought back all the memories from the beginning. I look where we are now and ya know it feels like a long time ago but also a flash of time.

Josiah had a great day today (and so did mommy :)) I am so confused. We were planning on changing the tube today but we now have decided against it? Ya I know the roller coaster of choices and decisions. We feel and know that we have made the right decision today. We will re evaluate on Friday when our favorite doctor is back and he can do the procedure for us. So again we are hanging tight and just praying that God directs us to make the right choices for our son.

I thought at this point the decision we would have to make would be what cloths to put on him in the morning, whether to change his diaper or not and when to wake him or not. But those choices will come soon enough when we are home. It will be a day for celebration.

We had two visitors today. My dads cousin and wife Murray and Heidi they took time to pray over Josiah. It was very special. There have been many people who have prayed over Josiah, Grandpa Haak, Grandpa and Grandma on both sides, myself and Andrew, Ken Esau, wow what a blessing. I am so exited and anxious for the day Josiahs healing is revealed. uggg I feel like trowing temper tantrums I am so anxious. But patience is a Virtue. God talked to me about this one through a starbucks cup :)

Dad and Josiah are hanging out right now. I have had him all to myself all day. IT was very nice.

Oh he farted while we were away and half the room heard him for real! Go Josiah! you the man. (The things we moms are excited about) And he peed all over his bed today while I was wiping his bottom. I then had to pick him up to change the bedding. I had his head in my hand and the respirator on my arm and his bum in the other hand. he was all tense then realized he liked is and flopped his arms and literally hung peacefully with a little smile on his face. IT was so cute!!

So please pray that we have peace. I am starting to feel that the end is near. ( no I am not preaching on the streets because that is what that just sounded like to me, he he he, OK never mind) So we must persevere and run as God is asking us to. I have learned that I need to let go of my past disappointments and look ahead to the hope that we have. It is a hard thing to learn.

Mommy,
Marie

Josiah says...

"I have had a great day. I am glad that God is going to heal me! I am trying to wait patiently like mommy and dad are asking me to but is hard. I really do not like the thing in my throat but I have learned that I can breath with the bubbles in my tube. And I learned that if I swallow they do not shove the awful dentist suction in my mouth. I like my soother instead.
Daddy keeps playing this game of stop punching myself and I think he is weird but I love him still. He talks funny to me when I look at him just like mommy does. It makes me happy though. I like my new Seseme Street story book, Elmo is my new hero. I let a fart go today and I made people laugh, it was great, but it kinda stunk though, oh well it made me feel really good.
My friend Nolan beside me, he is really small, gave me an Easter gift. I heard is was chocolate. I am looking forward to tasting that someday because it sounds good, they said they would put chocolate milk in my tube but they have not yet, I was disappointed. They joked about this thing called Coca-cola it sounds good too. Oh well mommy's milk is good for me now.
Thank you for your love! I am excited to see you some day.

~ Josiah

Monday Noon - An Album Update

(Josiah with Mommy & Daddy @ 1:45 PM Saturday, April 7th)
... he's getting to be a big boy!

I have updated Josiah's Flickr album - click "Josiah's Pics!" on the right to see the pics (most of have been posted previously).

Grace & Peace.
- Andrew, Marie & Josiah

Monday Morning - A Josiah Update

Good Morning World

I just off the phone with Marie who is in Vancouver (I'm still in Abbotsford until this evening). She was able to have a conversation with the doctors this morning during rounds, and the first thing they are going to do is some work with cardiology - check that there's nothing wrong with Josiah's heart (ie. the frequent brady-s). If nothing new is discovered there, they will probably extubate/re-intubate Josiah later this evening. PLEASE PRAY THAT IF THERE IS SOMETHING WRONG WITH JOSIAH'S HEART THAT THE DOCTORS WILL DISCOVER IT AND KNOW HOW TO RESPOND.

PLEASE PRAY FOR EXTUBATION/RE-INTUBATION PROCEDURE AND FOR JOSIAH'S SAFETY THROUGHOUT. There is always a risk of something going wrong when a breathing tube is removed, especially since Josiah has such a narrow trachea. The doctors will give Josiah a cuff-less tube, but that does come with some concerns since a cuff prevents secretions from entering the lungs which can lead to pneumonia. PLEASE PRAY THAT JOSIAH WILL BE PROTECTED FROM ILLNESS, INFECTION AND ALL COMPLICATIONS FROM BEING ON A RESPIRATOR. I'm not sure if the doctors are planning to give Josiah a few minutes to try breathing on his own or not, but I'll be checking in with Marie later. Hopefully I can have another blog up in the afternoon to provide more details and more specific prayer requests.

So, please continually pray for Josiah's healing. As parents we find ourselves in the 'second-guessing' stage where we are wondering if it's best to take the risk of an extubation/re-intubation with a cuff-less tube. We are convinced that Josiah has not be able to progress at all with this current tube (over a week now), but it's so hard and scary because there are risks in either direction (let him be or change it for him). And so we're forced back to trusting God ...

For the last few days I've been singing the same lyrics over and over again with Bono-like intensity:
I'm hanging on
You're all that's left to hold onto
I'm still waiting
(U2, Red Hill Mining Town)

I sing it as a cry-out to God, not sure how Bono sung it though.

Last week my parents brought Josiah a very special gift. My Grandma Haak died when I was in high school and I didn't know until now that she - in foresight - had prepared three infant outfits for her first three great-grandchildren before she succumbed to sickness. Looking back, it's clear to me that God must have been behind her working and prompted her to do what she did. She left behind 3 outfits, 2 for boys and 1 for a girl. The firstborns of my Grandma's first three grandchildren are the beneficiaries of these gifts (myself, my brother Mike, and my cousin Rick). Mike had a baby girl 2 years ago, and Rick and I had baby boys this year. A perfect fit and match. Again, I perceive this all as a stroke of God's perfect timing and way, a huge encouragement to me that God knows what he's doing even in these bleak times. I cried a lot (twice actually) when I saw the outfit and found out what Grandma had done. It was very very moving and it is very very special to me. I love my Grandma. She was (is) one of the most incredible women I have ever known.

Shoot. I'm crying again.

In God's Hands.
- Andrew, Marie & Josiah

Early Sunday Morning - A Josiah Update

Hello Everybody

It's been a late and long night and it's time for bed. I want to write up a detailed account of what we've been going through but I just don't have it in me. We're learning to trust that GOD is watching out for Josiah, not us and not the doctors and not the nurses, and to leave things in HIS hands.

Please pray for Josiah's continued safety (that his d-sats, brady-s, suctions, and throw-up won't harm him), that the nurses will be vigilant (because sometimes they really aren't - GRRRR!), and that the doctors in the morning will make the right decision - God's decision! - as to whether or not they should extubate/intubate Josiah again and put in a breathing tube that doesn't have cuff. The cuff is a seal at the bottom of the tube that - in our observations as well as Dr. Catherine's, a real sweetheart of a person who has been such an encouragement - has been a steady source of frustration and irritation for Josiah. Please pray for Josiah's safety and the doctor's wisdom if they do choose to re-intubate him. A Dr. Pascal is on tomorrow and we can trust his judgment because he's worked with Josiah lots.

Thanks. Sleepy time.

"Waiting on the world to change" ... have mercy God.
- Andrew, Marie & Josiah

Friday Evening - A Josiah Update

(Josiah @ 2:30 PM Friday April 6th)
... dreaming of being a professional sumo wrestler

(Josiah @ 11:30 AM Friday, April 6th)
... barely sleeping & getting that cute chubby baby look!

(Josiah with Daddy & Grampies @ 2:30 PM Friday, April 6th)
... male bonding ... notice his lightning-quick right chop ;)

(Mommy & Grammy with Josiah @ 2:30 PM Friday, April 6th)
... yes, she's a Super Mom ... the t-shirt says so

(Josiah & Daddy @ 11: 45 AM Friday, April 6th)
... Happy Easter buddy :)

First, off ... Easter Friday Greetings. In hospital-ville one day doesn't look any different than the other: the only noticeable way of noting days is by visitor traffic and Starbucks operating hours. Sad eh? :)

Pictures! Just like I promised. I got this up sooner than expected because I have accessed wireless in our Easter Seals room. Enjoy!

My folks have finished there visit and will be heading back to the Okanagan tomorrow. In two weeks my sister is coming! Yes, Wesley, you're the only sibling who hasn't visited us yet. This is a Marie-approved guilt trip! ;)

Josiah has mostly ended the day well. He seems to be resting better in the quietness of the night, but we still have some concerns. We (Marie & I) believe that there is something wrong with his breathing tube, most likely that it is placed too far down his throat. Almost every time he is suctioned Josiah 'brady-s' (ie. his slows down) which NEVER happened with his prior breathing tubes. Secondly, Josiah has way more secretions as well, something that we believe is caused by his 'cuff' (a seal placed at the bottom of his breathing tube that prevents him from breathing around it). I don't think Josiah's secretions will improve until they give him a breathing tube without the cuff on it. We also have questions of what the trial extubation will look like and when it will take place. So, Marie's going to try and bring these questions to the doctors tomorrow on rounds (I'll be taking it as my day to sleep in!). Maybe with Cindy Shaw visiting - our doctor - the doctors and nurses here will listen to us better :) Pray that Josiah would continue to receive the best care possible, and that his secretions would lessen so he can sleep better.

Please continue to pray for our cute fella day and night. We know there are people isnall different time zones(that's right - we're talking to you Australia & Africa!) so even a quick prayer at anytime can provide our Josiah with round the clock intercession!

YOU ... GUYS ... ARE ... AMAZING. We couldn't have made this through without the Church. Thanks for mourning with us and praying with us.

In God's Love.
- Andrew, Marie & Josiah

Friday Noon - A Josiah Update

I know, I know ... finally a post :)

There really hasn't been anything new to report since our last post on Tuesday. We're in one of those 'maintain' phases where we're Josiah's cheerleaders, cheering him on to sleep and growth. Josiah has been able to adjust more or less to his large breathing tube and does have long stretches of rest, but he still has the problem with lots of secretions and obvious irritation. Just this morning from 9:30 - 10:30 he had to be suctioned 4-5 times because he kept on coughing up more spit and mucus and had some irregular breathing/body language - basically wasn't crying but couldn't settle down at all. It was very sad and hard to watch and it left me praying a lot, but I think he's been resting since 11:00.

Continue to pray for us, for wisdom to make the right decisions in all of this. Mostly, pray for Josiah's healing: God says with faith He will heal, right? So get your faith on and keep praying for healing! God creates, sustains, and restores and I'm convinced he wants to heal everyone, including our Josiah. Pray for patience on our behalf: God has been doing many amazing things during this period - challenging people's faith, revealing himself to those who don't know him, allowing us to be an encouragement to others, having Josiah's story told around the world (and I'm not exagerrating) - but we are at that point where we are saying "Enough God! Fix this! We can't take anymore!" Perfectly normal feelings I know, and it's right: WE can't take it any more, but God grants us just enough strength, courage, and faith to make it through our days. Sometimes just barely enough, but enough.

So yes, patience :) Patience to wait on God's planning and timing, patience in not trying to guess God's miracle or to hastily act in carelessness. God has demostrated over and over again his 'perfect timing' in Josiah's life and we are waiting anxiously for this next big 'perfect timing' when God will enable Josiah to breathe on his own.

My church has bought me a laptop to continue in my job here while I'm at the hospital, probably the largest reason why I haven't been updating the blog as much. I've still been in Abbotsford 3-4 days a week working. Marie has been able to leave to Abbotsford on two occasions recently, the latest on Wednesday when we were able to share with our elders and have the pray for us. I say this a lot and I'll say it again: we have an amazing church family :) Marie's doing better at pacing herself, setting up workable boundaries to maintain a healthy balance of self and child, which has been really encouraging to see.

Again, sorry that there hasn't been any recent pictures posted. I don't have my camera with me our else I would have put some up with this entry. There will be some coming this weekend, I'm sure of it!

Thanks again to our steady stream of visitors: both sets of our parents have been out this week, as well as our friend Leanne K. Thanks to our random 'scrapbooking followers' who have been keeping up with our Josiah, sending notes and dropping in. Kimberly - sorry we missed you the other day! Thanks for the gifts SSLC!

In God's grace & peace, our lifeline and our sustanance.
- Andrew, Marie & Josiah

Tuesday Night - A Josiah Update

Hello Folks!

So sorry to leave you update-less for so long. Monday was a ridiculously full day for myself that left me no time to post anything. Today has also been full so I'm making some time now in the late evening.

Josiah has been OK today, but he didn't get off to a good start. He was wide awake (and probably pretty fussy) from 2-7 AM and only slept for about half an hour before Marie showed up in the morning. Marie tried to hold him for a while this morning, but he ended up 'brady-ing' in her arms and that really disturbed her and pushed her over the edge. There's been a lot on Marie's plate this weekend and I think that was the last straw. Josiah was sedated in the afternoon because he wasn't sleeping and he's been doing really good ever since. His secretions throughout the afternoon and evening have been minimal and he really only gets crabby when he fills his pants - who blames him?! :)

Marie and I were able to get away from a while and went to Kits Beach for an hour. Beautiful place but the wind was terribly cold. Marie really needed to put some healthy distance between herself and the NICU since it's pretty much consuming her. She'll admit she's not a really good place emotionally (which is to be expected) and so she's been back at Easter Seals sleeping since 4:30-ish.

Like I mentioned earlier, Josiah's been having a really good deep sleep through the afternoon and evening. I was planning on getting some youth work done, but instead I'm reading and playing Sudoku beside his crib. :)

Hmmm ... I'm pretty sure I was going to write something else ...

A lot of Marie's mental space has been dedicated to processing all the G-Tube info she received over the last couple of days. We thought that it was pretty simple - Josiah's getting a G-Tube and it's a good thing - but then the surgeon dropped by and stated his reluctance because of Josiah age and Marie was convinced that we could wait. THEN the OT (occupational therapist) came by and told Marie a G-Tube was necessary ASAP because a NG-Tube (through the nose) wasn't recommended for long term. THEN we were told that G-Tube surgeries are usually delayed until the child is ready to be discharged. Obviously Josiah is ready to go home yet because he needs to work on his breathing, so all this information really left Marie unsettled because it brought us back to a place of uncertainty. Darn that fog!!

So we have basically put forth that we will give Josiah a few weeks to work on his breathing as we wait from God to know when we are to let him have an attempt at extubation. Our plan - and we are confident that this is God's plan too, but hey we're always open to more clarification from Him! - is that Josiah will be successful at extubation and then sent home with a NG tube. What we tell the doctors - after we tell them that God is going to heal Josiah - is that if the extubation is unsucessfull then we'll trache and G-Tube him simultaneously.

There is a lot tears right now and we (Marie and I) really feel as though we've hit a wall. Thankfully, God has gifted us in different ways. What I mean is this: in our marriage we have always joked that when one person is up, the other is down - we can never be on the same page emotionally or whatever. Of course this isn't entirely true, but has been proving true some days in the last 6 weeks. There have been so many times when I've been an emotional wreck but Marie has been strong or vice versa. Today was one of those days where Marie was down and I was up. It may have been Marie's hardest day to date, even worse than those post-partum nasties in the first week.

So please continue to pray for us and our Josiah. In fact, here's a list of current prayer requests to make it easy:

• Pray that Josiah will not self-extubate and will be able to rest well'
• Pray that Josiah's secretions will lessen and that his trachea will expand and firm up to what it needs to be - Pray that God will heal him!
• Pray that Josiah will receive all the primary nurses he needs (we even have now nurses who can't be primary asking other nurses on our behalf to consider primarying Josiah just because they see the big need - cool eh?)
• Pray for Marie as she carries a lot emotionally everyday, dealing with Josiah's up's and down's and working with nurses to care for Josiah (it's always hard when the nurses disagree with Marie's gut instinct which - of course! - usually is right)
• Pray for myself, for travel safety (and sanity) and as I balance family and work, especially for the gentleness and wisdom I need to be the husband Marie needs right now

I think that's enough prayer requests for now. Tomorrow I'll try to get around to posting some fresh pics of Josiah. I've been reading a book called The Emotionally Healthy Church and there was a portion talking about the 'ministry of weaking' and the gift of a handicap'. It's more than a coincidence that the very first example of 'handicap gift' was - believe it or - having a child with special needs. Talk about getting your attention ...

Toodles for now! Thanks for all the love and prayer. Thanks to Trina U. for dropping by yesterday to hang out with Marie, and for Marie's parents and my grandparents dropping in on Sunday. Yo Carly Simla! How goes it?! Just like you asked - my email address is andyman_sdg@hotmail.com. :)

Thanks for praying for us and spreading the word. I am blown away each day as it seems another person that we would have never met otherwise is praying for us and Josiah. God is good, so good.
- Andrew, Marie & Josiah

Sunday Evening Post

I (Marie) wrote a post but it went down to the wednesday section because it was saved there origonally.