How to Comment on our Blog

We've heard that a few people have been having trouble commenting. We understand that a lot of people following our journey are not usually blog readers, so perhaps a post like this is long overdue. Our apologies. 

Here's how to do it: 
- At the bottom of the post, click on the link that says '0 Comments' (or 1, 2 or however many). This will take you to that post's individual page, with the Comments section at the end. 

- Enter your comment in the box that says 'Enter your comment'. 
- Click on the triangle next to the 'Comment as:' box to tell us who you are. You can sign in if you have a google or other account, enter your name and URL if you have a website, or just click 'Anonymous'. 
- Click 'Publish'.

These instructions will now appear each time you go to a Comment page, so no remembering required :)

Should I expect a flurry of comments from people who've been bursting to say something and now know how?

Big brother, little sister

I was sitting on the couch this morning, trying to rouse sleepy F to finish her feed. SP came over wanting to be helpful, so I suggested he sing her a song to wake her up. I was expecting him to launch noisily and tunelessly into one of his current favourites. 

Instead, he created a new song just for the occasion (or the first line, anyway), in his lovely but seldom used soprano: "Wake up, my little baby"

On a slightly different note, here's some photos of SP and F, each aged 4 days, with their wonderful Daddy. I wish now that we'd waited for F to go to sleep and recreated SP's pose. Oh well. 

Click here for photos.

Progress

Have you ever really looked forward to hanging out the washing?

I realised this morning that I was. And then I did it. I hung out an entire load of washing (including 2 extra trips up and down the stairs because my brain isn't working...) without sitting down. Hooray!!

My heart rate is still quite slow for me, as it will apparently take the digoxin a couple of weeks to clear my system, and there's obviously fatigue associated with childbirth and parenting a newborn, but the energy is definitely returning. 

So many things to be thankful for. 

Merry Christmas from Team Ench!

We're home! The cardiologists are "happy, happy, happy" with F's heart, the neonatologists are happy with her jaundice and general condition, and we're so happy to be here together.

With all the hospital action of this morning and this afternoon's homecoming, it hasn't really felt much like Christmas, but it's been a wonderful day. 

Show photos

Update

A quick update on things:


F continues to learn how to feed, and is getting better at it all the time.  The cardiologists want her in at least one more night (at one point it looked like she might be coming home tonight), but given that we live so close to the Mater, it sounds like they might let her come home tomorrow.  That would be the second best Christmas present ever.  (Refer to the opening chapters of Matthew or Luke if in doubt about the best Christmas present ever).  There's possibly a little jaundice so she'll be under a uv blanket tonight to try and resolve that quickly.  They also said that we'll need to do some monitoring ourselves for the next month - just listening to the heartbeat a couple of times a day to make sure it's in sinus, not SVT.  Thankfully my sister is a cardiac nurse so she has a stethoscope we can borrow until the shops open after Christmas.


Petrina is doing marvelously.  She's off the heart medication now and had her own ECG today, which the adult cardiologists said looked fine.


When I was writing yesterday's post, I failed to mention how impressive and encouraging my wife is.  My job during contractions was to make fingers available for squeezing and to count until the peak had passed.  Easy enough, although Petrina didn't seem all that fussed about my offer to count in Fibonnaci numbers or prime numbers, just to keep things interesting.  But while I was doing that, she was living out our faith in a remarkable way, alternating between singing the old hymn "Abide with me" and praying openly and unashamedly for God to protect her, protect the baby, to make the drugs effective, everything.  I don't think anyone who'd been in the room would have left with any doubts at all about where Petrina's hope and trust is centred.


Here at home S and I are both looking forward to having our girls home soon.  Please keep praying that S will adapt quickly to having a baby in the house, and some of the changes that will come with that (like vastly reduced tolerance for racing through the sleepout at bath time laughing hysterically or choosing to shout at the top of his lungs at random moments when he feels things are too quiet).

Introducing the newest member of Team Ench

It is with very great pleasure that we introduce you to the newest member of the family.


To read more, click on the link below and type in the password.  Contact us if you haven't got it and would like it.

Show encrypted text

It's a girl!

At 14:22 on 22 December 2011
Weight: 2898 g
Length: 50 cm
APGARs: 7 at 1 min, 7 at 5 mins, 9 at 10 mins
Health status: wonderful!
Current location: having a feed from Mummy :-)

Here we are

Mainly this is a test post to make sure I can do the big announcement from my phone. But I may as well tell you that I'm lying in birth suite waiting to get things started. Feeling a bit anxious this morning. Prayer appreciated as always :)

Progress...

We've been to the hospital, and we're home.  The good news is that Petrina is already dilated a couple of centimetres so she doesn't need gel to get things going.


A point for prayer is that baby is currently sitting high, so there's a possibility of the cord coming down first when they induce, which would mean an emergency ceasar.  The doctors have a couple of options to prevent this, but please pray that while Pib's asleep tonight baby would come down of its own accord.


It was incredibly odd to be back in the birth suite tonight; I felt very unprepared.  But one way or another, in 24 hours we'll be back out on the ward getting to know our new son or daughter.  And after the experiences of the last two months, that will be wonderful.

Nearly time

24 hours from now I'll be in hospital (unless I don't need the gel and they send me home until early morning)

48 hours from now we expect to be well acquainted with our baby. 

I thought I'd share some prayer points for the next few days. We are so thankful for everyone's support and prayers thus far. So without further ado, please pray for: 

• Good rest and good energy for me, particularly between now and Thursday, but also after that.
• SP coping with me going back to hospital. He's realised that things are imminent and is getting a bit clingy again. And for him coping with a new sibling and all that that entails. 
• Dave having energy and health. He's feeling very tired and run down, and has a habit of getting sick on holidays. We'd love that not to happen this time around :)
• Labour being smooth and uneventful. And that we'd be calm and trusting and the doctors will be wise if it's not and other things need to be done. 
• Baby's heart coping with labour, birth and the outside world. And again, trust and wisdom for any treatment. 
• I'd love to have a cuddle with the baby at birth, but I also want the necessary testing done ASAP. Pray that we'll enjoy meeting and getting to know this little person, however physically close we're able to get. 
• Getting breastfeeding well established, especially if Baby spends significant time in the nursery. 
• Most importantly, pray that we would trust God with the big picture, the nitty gritty details and everything in between. We continue to be so thankful that He has all this in His perfect control.

Password protection

Pretty soon, Baby will have a name and a face that we can photograph. And that we're personally not comfortable having on the internet for all to see. 

Which means we'll resume password protection for posts or sections of posts that contain photos or identifying details. 

So if you know us and you don't already have the password, send us an email or a facebook message, or leave a comment, and we'll send it to you. 

But don't worry, if you're just a random observer or if you don't get around to asking for the password in the next 4 days (4 days!!), Baby's gender, basic stats and health status will be available for all to see :)

A big step closer to ready

It was Working Bee day here today. 

From about 8:30am, we had 4 wonderful helpers arrive to turn our very scary sleepout into separate study and baby areas. It may have seemed overwhelming at times, but by about 2:30 things were looking so much better. 

Here's the before shots: (yikes!)

And after: 

As you can see, there's still boxes and things hanging around waiting to be dealt with, but it's amazing to see some more of the floor! The blue divider screen is (intended to be) a temporary measure, just to get us (and SP) used to the idea of it being two separate areas. We'll hopefully have a floor to ceiling curtain made before too long. But realistically not before Baby is born, so it's very helpful to have the screen for now. 

Many big thank yous to my tireless husband and our wonderful workers :)

Thankfulness #7

Today, I'm being extra specially thankful for my husband. Five years ago I walked down the aisle towards him, and I have been privileged to walk through life alongside him ever since. 

I'm also thankful that we had our proper celebration, a night at the Stamford Plaza, 4 months ago. God knew that we needed it then, and that it would be even more difficult now than we'd anticipated. We will get out for some date time tomorrow though. 

To Dave, thank you for being such a wonderful, caring, self-sacrificing husband. There's no one I'd rather spend my life with than you :)

God is amazing

A few days ago we heard very sad news from one of Dave's cousins. A scan of her unborn baby showed serious concerns about the baby's brain. 

Today, another scan showed that the brain measurements are now normal! Praise God!

I told SP that God had answered our prayers and that that this baby was now well, and his little face was a picture of amazement and delight. 

Latest update

We had another scan today. The last one scheduled before Baby is born. It felt a bit like the end of an era, I've had so many!

Apart from my excessive lack of energy, everything looks good with baby and with me. Normal. I'm still overwhelmed that we've come this far. 

I'm due back at the hospital at 5pm next Wednesday, unless things get started before then. 

I'm planning to post again with some more thoughts on things, but my brain isn't quite functioning right now. 

Thanks for all your prayers :)

News just keeps getting better

I'm feeling quite overwhelmed by how much God has blessed us. Everything looks fine on the scan today. Our wonderful staff specialist sonographer made the comment that you'd never know this baby had a troubled history from looking at things now. Amazing. 

Today's surprise is that amniotic fluid levels have come way back down. 2 weeks ago we were at 26.8cm, last week 25.8. Normal is between 5 and 25 cm. Today: 17.something! (They were so busy at Maternal Foetal Medicine that we elected not to wait for the report, so I'm doing things from memory). That's another risk factor that we don't need to worry about any more.

Now that the fluid inside baby has gone, we were able to get a better look at Baby's size, and that's also better than expected. Baby growth is around the 14th percentile, or around 2.6 kg at the moment (though there's considerable error in scan measurements). Tracking along the graph, I figure we could be looking at around the 3 kg mark at delivery, which is perfectly respectable. Turns out baby does just have short thighs compared to the rest of it. 

And the news you've been waiting for: we're booked an induction for Thursday 22 December, which means going in on the Wednesday evening and probably having prostaglandin gel, then breaking waters in the morning. There was much discussion about this date and course of action. 

- From the baby's point of view, we could have gone longer and let baby grow a bit more. The doctors would even be happy to wait for spontaneous labour, even a few days after my due date. But it doesn't make too much difference now that we've come this far. 37 weeks is considered 'term' (that's today!!), so 38 weeks 6 days is fine. 

- For my health, not waiting too much longer is a good thing. I've been on these drugs for some weeks now, and while my heart appears to be coping ok, I am experiencing side effects (mostly tiring very quickly). So getting baby out and weaning me off the drugs is a good idea. 

- I'm still a bit concerned about my ability to go through labour, given my lack of energy, but I've heard an epidural is a wonderful thing. Since the baby's heart rhythm is stable, labour poses no particular risks to its health, and avoiding a caesarean would be good if possible.

So unless it's God's plan that I go into labour earlier, it looks like 22 December will be the day. 

Dave, SP & I did a quick tour of the nursery as well. The baby will definitely go there post-birth, hopefully just for lots of tests and not too much treatment. But if treatment is needed, that's the place to be :) 

I think that's it for now. God is SO good. 

Happiness is...

... looking for a Christmas carol CD to play whilst cooking and discovering the complete Messiah CDs that I'd forgotten I'd been given since last year.

Thankfulness #6

We're thanking God for this lovely cool weather. The first week or so out of hospital was so much more difficult because it was so hot, and cooler weather is making such a difference to my coping ability. Looks like the heat is coming back in a couple of days though . . .

Processing through Play

Whilst playing in the yard yesterday, SP announced that he couldn't walk a long way over to me because he had a baby inside him. Then he got on his little car, drove to the hospital, found a car park (quite a long process), and sat waiting for his scan. "It's a looong time to wait!" I didn't notice the scan happening, I think he got distracted by something next door, but when I was recounting this story over dinner, he reported that it had been fine. 

Kids are amazing. 

Thankfulness #5

Today, I'm thanking God for my beautiful boy. Life has been tough for SP lately, but he's been such a trooper. And very helpful too - it seems my hydration levels are very important to him so he brings me my water bottle any time he notices it around, as well as fetching and carrying many other things and (usually) being very understanding when I can't do something with him.

He's in rest time at the moment, singing 'He's a Mighty God' and 'Joy to the World' (which he thinks is about Aunty Joy as well as Jesus). My heart smiles :)

Edited a few minutes later: I'm now hearing "Mummy, could you bring me my helping stool because I want to open the door? There's no stool in here at the moment. I can't reach the door handle." Lovely polite asking, but... no.

More good news

Last week's scan showed that the fluid inside Baby had lessened. Today, it's gone!!! Praise God for this amazing and unexpected development. We were hoping for continued lessening of fluid, but to have no evidence of it is phenomenal. Woohoo!

At this stage, we're looking at planned delivery (but not necessarily caesarean) in the 38th week, so probably 19-21 December. We can expect Baby to go straight onto medication, and there's certainly a chance that the heart could go back into abnormal rhythms after birth and need more intervention. But the fluid was a big risk factor which is now dealt with. 

We have another scan and a meeting with the neonatologist on Friday, to sort out a bit more of the nitty gritty. 

To quote the staff specialist today, Baby's future is now looking "very bright". How far we've come in 6 weeks. God is blessing us in so many ways.

Scan tomorrow

Sorry we haven't said earlier: we've got the weekly scan tomorrow morning, followed by a 'where to from here' meeting to talk about expectations for delivery and what's likely to happen after that. 

Pray that the doctors would give us the right information, that we'd ask the right questions, and that we'll all be on the same page. 

Thankfulness #4

One of the questions I'm asked most frequently is whether I'm on bed rest / activity restriction etc. Answer: I'm not, but sometimes it feels like I might as well be. 

The medication I'm on is doing a fantastic job of keeping Baby's heart slow and steady, and it's doing the same to mine. At the moment, this means that I can cope with being up and about for about 5-10 minutes of very light activity (like getting ready in the morning, pottering around the house) or 2-3 minutes of just standing or 1 trip up the back stairs. Then I need a sit down to recover myself before doing a bit more. I can sit and chat pretty easily, but even that wears me out after a couple of hours and I need a lie down. I thought I was tired at the end of my last pregnancy, but this is something else entirely!

I still feel like getting out and about and doing things though. Enter, the power shopper!

 

Image credit

My lovely sister-in-law took SP & I to the shops this morning and the power shopper was fantastic. And surprisingly easy to steer - I was quite scared at the start that I'd knock someone over. Yes, it was quite bulky and made for a considerably more difficult shopping trip than just walking, particularly when there's a pram in the convoy too, but without it I couldn't have even considered wandering around the shops for even 15 minutes, let alone a couple of hours. 

It was so nice to feel like part of the real world again. So I'm thanking God for: 

- power shopping technology
- Westfield providing it free

- the opportunity to see what one aspect of life is like for someone with mobility problems

- the temporary nature of these problems for me. Once Baby is out and I can stop taking the meds, I should be right back to normal :)

A link to share

Click on over to the 'Come Follow Me' blog and read some reflections on the recent twin termination tragedy from the mum of a now-3-year-old that doctors wanted to terminate. I'm horrified to think of how many precious babies there may be who are never given a chance at life.

Come Follow Me: A Question Worth Asking

Hat tip: The Useful Box

Thankfulness #3

Well, obviously I'm thankful for the results posted yesterday :)

But I'm also thankful that God only shows us life one moment at a time. 

A month ago today, I went to Bible Study already feeling tired, wrung out and not-quite-coping, then to what was expected to be a routine scan. If I had been able to see even a few minutes in front of me... well, I'm not quite sure what would have happened, but me falling in a heap probably would have been a large part of it.

As I think back to those first hours after the scan, I thank God that my own understanding of the struggles facing this baby came gradually. That God gave the doctors the words to say, and gave me time to process the implications, from the original 'this is more serious than it was with SP', through 'this is hugely serious and baby is very sick', right to 'it looks quite likely this baby won't survive.'

And although it's tempting to think that knowing yesterday's result a month ago would have been lovely, I know that God has taken me places in the last month that have grown my faith in Him immeasurably, and has given me so many opportunities to share bits of that faith with the people around me. Opportunities that wouldn't have come any other way. 

So as the rollercoaster ride continues, I have no desire to know the future. God does, and He'll give it to us as He always has, just one moment at a time. 

Good news

We had the fortnightly growth scan today, and baby's abdomen is shrinking! :)

While getting smaller is not something to be celebrated in an average pregnancy, for us it means that the fluid inside baby's body is resorbing and baby is getting better. The fluid is still there, and I think the medicos had hoped that it would decrease faster than it is, but we're definitely heading in the right direction. 

The rest of baby's measurements are tracking pretty well. Those that are least influenced by fluid (and thus more reliable indicators of baby's true size) are around the 3rd percentile. So very small, but considering everything else, that's not much of an issue. 

What could possibly be an issue is the amount of amniotic fluid (around baby). It's been hovering around the top of the normal range for the last month, but has now tipped over into the 'mild polyhadramnios' range. Not something of immediate concern, we're not doing anything about it, but a return to the normal range would be nice. 

Baby finally cooperated and gave us a glimpse of his/her face. With markers to aid interpretation :)

 

Thankfulness #2

I am thankful for whoever figured out that chemicals in a mother's body go through her placenta to her baby. It really is amazing that I can take a typical adult dose of a cardiac drug and it can restore rhythm in the baby's heart. 

And so thankful that it worked. The next step was going to be a big needle straight into the cord or baby's thigh, and that just freaks me out. 

Our little conversationalist

It amazes me how kids learn language. I keep thinking of a time, months ago now, that I overheard SP experimenting with grammar. "Kanga hops. Roo hops. Kanga and Roo hop." He could have been writing a textbook. 

Tonight, we were sitting at the dinner table, doing the general 'how was your day?' chat, and he joins in with "What were you learning about at work today, Daddy?"

Totally appropriate. And totally gorgeous :)

Thankfulness #1

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.         Philippians 4:6-7  

There's so much that we could be anxious about at this time. So many uncertainties, so many difficulties, so many things that just seem wrong.

But the Bible teaches us to be thankful instead.  So over the next few days/weeks, I'm aiming to do a series of posts about things I'm thankful for.

Today, I'm thankful for God, who's plans are perfect and who is always in control. For Jesus, who died and came to life so that, as imperfect as we are, we can know our perfect God.

I can't imagine how we would cope with the stresses of everyday life, let alone a situation like this, without being 100% certain that God is looking after us and everything will always go according to his plan. Even when it seems like life is falling down around our ears, we trust in Him.

Pray that we would keep trusting. 

Update

This morning's scan results were all good.  In fact, baby was annoying the doctors today (just a little) by moving around so much that they couldn't get a detailed look at all the heart stuff.  That's so much better than the sluggish baby of a few weeks ago!


Petrina's observations and ECG are all fine; next scan will be sometime next week.  Yay!

Thanks

Have we said thanks recently for all the prayer and practical support everyone's been giving us?


Thanks.


Next scan is Friday morning.  Petrina continues to feel good movement, so we pray that we'll see continued improvements in heart function and fluid levels.  SP is still a bit upset about me going off to work each morning, but is much happier having mummy around during the days now.

Encouragement

If you didn't already know, music is one of those things that's been a big part of my life. I grew up listening to lots of classical stuff at first, until I discovered the likes of Petra and Whiteheart. I still play at church although I don't keep up with new music as much as I used to... although one could argue that the current manufactured rot is usually not worth the effort.

Anyway, this post is actually supposed to be about sharing a couple of songs that I've found encouraging on many occasions, including our latest rollercoaster ride.

The first song, by a South African band called Tree63, is called Here of All Places. I've often taken comfort in its reminder that even in dark or stressful places, God is at work using it to refine us and increase our trust in Him.

Here of All Places
John Ennis

Here of all places
I'm face to face with
What You began and what I've become
First there was fire
Now, just a flicker
Will breaking my heart lead me back to You?

I shout truth at You
Without love for You
I am blown up beyond recognition
I will sing to You
'Cos You made me to
Won't You help me to mean it?

Chorus:
Hallelujah
Hallelujah
Hallelujah
Better here than nowhere

Something out of nothing
Beauty from ashes
A glorious reign after humiliation
So, I race through
Here of all places
Where nothing is left but my trust in You

You won't give me up
You can't let me down
You'll be standing to welcome me home (one day)
Come sing over me
Come sing over me
Won't You help me to hear it?

Unfortunately it's not up on Youtube, but you'll probably find it on iTunes if you want to know how it sounds.

The other song is by Petra, and is called Thankful Heart. It's taken from part of Paul's letter to the Ephesians, where he encourages them to "...give thanks always and for everything to God the Father in the name of our Lord Jesus Christ..." We've had so much to be thankful for in the last couple of weeks and even though we know there's still a lot to go through, we keep giving thanks to God for the way He sees us through each step of the way.

Thankful Heart
Bob Hartman and John Elefante

Chorus
I have a thankful heart
That you have given me
And it can only come
From you

There is no way to begin
To tell you how I feel
There are no words to express
How you've become so real
Jesus you've given me
So much I can't repay
I have no offering

Chorus

There is no way to begin
To tell you how I feel
There's nothing more I can say
And no way to repay
Your warming touch
That melts my heart of stone
Your steadfast love
I'll never be alone

Chorus

I have a thankful heart
Words don't come easily
But I am sure You can see
my thankful heart

Help me be a man of God
A man who's after Your own heart
Help me show my gratitude
And keep in me a thankful heart

Chorus

This one is up on Youtube if you want to have a listen. And try not to cringe too much at the bad 80's fashion in the clip.

Now this looks good...

It's Australian made, and contains all the essential food groups:

Daintree Estates

Home, sweet home

I've just finished watching the Mythbusters blow up something else. That's nice.

SP is sound asleep. That's nice too.

But what I like best is that as I sit here typing this, my beloved wife is lying here beside me resting. For the next few days at least, she's home!

This afternoon's scan was everything we could have prayed for and more. Rhythm and rate were good and right from the start the sonographer was talking about how Friday's scan was looking a little better but today's looked a lot better.

They didn't do a detailed growth scan but both the sonographer and the staff specialist said that subjectively the oedema and ascites looked better than it had before.

They also said that the contractility (a measure of how much the heart contracts) was getting better, sometimes normal now.

Other notes that Petrina's just handed me:

• Her amniotic fluid level is still a bit high but within the normal range - no more polyhydramnia
• Blood flow through the stomach (another measure of heart function) is improving, to quote the sonographer "1.5! That's within normal range"

Petrina's final comment on the matter: "Being tired and puffed is worth it"

Thank you for all your prayers thus far. Please keep praying for good healing for baby, that SP will enjoy mummy being home without wearing her out in the first five minutes, that Petrina will know her limits, and that we'll keep moving towards a safe delivery of a healthy baby.

Update

Not much to report since Saturday's post. It was lovely for all the family to go in and see Petrina on Sunday afternoon and to pass on the prayers and well-wishes from all our friends. All the weekend observations of baby's heart have been good - sinus rhythm and a good pace, praise God! If this morning's scan shows that the fluid levels are starting to decrease, there's a small chance that they might let Petrina come home. If there's no improvement, we're not sure if they'll just up the dose again or switch to a more direct treatment.

Give thanks:

• That because we live so close to the hospital, Petrina could come home for Friday's leave. Normally they only let patients go as far as Southbank
• For the good obs of baby's heart over the weekend
• For family and friends who are caring and supportive of us all

Pray:

• That SP will cope OK. Each day it's harder for him to see daddy go, which makes it harder for me to leave
• That the scan will show less fluid, so they don't need to increase the dose or change tack
  
• That Petrina will keep coping with the exhaustion that comes from this medication, and other intermittent side effects
  

Leave, wonderful leave

Petrina was able to take a couple of hours leave yesterday afternoon, and it was wonderful! SP was absolutely delighted to have her home reading stories again, and it was lovely for us to just sit together on the couch being in each others' presence.

The higher medication dose is knocking her energy out though, so it's for the best that she's still in and not trying to do things around the house. It'll be interesting to see how things go if they do change to outpatient treatment before baby is born.

For now, please pray that this will be a healing weekend. There's been lots more sinus, but the high fluid levels (a.k.a. hydrops for those with a medical inclination) are still a problem. Pray that there will be long periods of sinus rhythm, giving baby's body the time it needs to clear the fluid and start getting stronger again.

And wouldn't you know it - after my post yesterday about missing parcels, guess what arrived at 1/4 to 5 in the afternoon? That's right! SP may be too young to build it on his own, but he loves helping daddy with it.

The nerve of some people...

A little while ago, I ordered some Lego online from a bunch of yahoos known as Fishpond. Two months later I haven't received the original order, or the replacement I requested when the original was about 3 weeks overdue.

Now what do I get in my email today? A note from Fishpond spruiking their "sell yours" function, and saying how much I could apparently make. Cheeky so-and-sos. Yes, of course I trust you to sell something you can't even deliver!

Further research shows they're not actually an Australian company, despite what the website leads you to believe. If I ever get my order, or a refund, this is one customer who isn't coming back.

In the news that all of you are actually interested in: when I posted this morning I didn't know that there had been quite a lot of SVTs overnight (phone was playing up, but that's another story). A scan this morning showed sinus the whole time, but no improvement in the fluid. So they're increasing the dose, and Petrina can't come home yet. She may still be able to secure a leave pass for a few hours today or over the weekend, we'll see.

Looking hopeful...

Things are looking hopeful today. Although a doppler yesterday morning showed SVTs, by the time they got to the ultrasound scan baby's heart was back in sinus. We don't know how long it was in SVT before that, but the doctors didn't need to change Petrina's medication, which is good.

Even more hopeful is the case conference they're having this morning. The resident told Petrina yesterday that from the Mothers side of the house, they're happy for her to continue treatment as an outpatient. If the Adults cardiologists/physicians agree, she can come home!

SP will be very happy with that. He's coped remarkably well with shuffling from one place to another this week, but "want daddy to not go to work and look after me" when I got him up this morning. Even if Petrina doesn't lift a finger (and I suspect doctors instructions won't allow much more than that) he'll still be so happy that mummy is home.

So give thanks that things continue to look better for baby. We know the doctors will do what's best for Petrina, so pray that the best thing would be for her to continue as an outpatient.

Things you learn in a men's group

Normally our men's Bible study group gets together to study the Bible - I know, that's a stunning revelation. But every now and then we just spend time relaxing together around the BBQ and things like that.

Last night was one of those nights, and for someone short on sleep, the discussions were particularly interesting. For example, did you know:
- Your deer (or other game) will taste much better if taken with a head shot?
- That if you go by surface area rather than mass, men eat much more salad and vegetables than you'd expect?
- Salami is a functional rocket fuel?

After missing Bible studies for the last couple of weeks, it was good to spend some time with the guys again (SP was having a sleepover). Laughter really is a good medicine.

Thanks guys.

Hope and progress

Petrina's just had another scan, and the results are the best we've had since we found out about baby's heart trouble. The rhythm was all sinus - not even any ectopic beats. Praise God for that.

The heart is still enlarged and there is still a lot of fluid around, but we know that takes time to clear anyway.

Please:

• Give thanks for such an encouraging result today!
  
• Pray that the medication will keep working, with no negative side effects as it builds up in Petrina's system
• Pray that as baby's heart gets stronger, the fluid and enlargement will be resolved quickly
  

For those who came in late...

Petrina asked me to do a quick post to fill you in on the number one question that she's being asked at the moment: how did you find out about baby's heart problem?

We had a routine morphology scan at around 20 weeks. During this scan, the sonographer saw some ectopic beats, i.e. every so often it skips a beat. We'd had exactly the same thing with SP, although it didn't start that early. He's a bright, healthy little man, so we left the scan thinking that it would just be more of the same for this baby.

To the best of my knowledge, it's standard procedure if they pick up an ectopic beat to schedule a follow-up scan to check the heart structure. Well, that scan was what we had a couple of weeks ago. Baby's heart structure is fine, but as we know, the rhythm and rate are still needing treatment.

There was a slight change in the treatment plan last night, so Petrina didn't start the new drug until this morning. The scan scheduled for Wednesday might be moved to Thursday to make sure the drugs have had enough time to get into her system.

Back on the rollercoaster

Back on the rollercoaster

I have to admit, I started today with a bit of trepidation. There were no scans or doctor's appointments over the weekend, but with a scan scheduled for this morning there was that growing feeling of "what's next?"

The good news is that although the first scan this morning only showed SVTs, the doctors decided to do a follow-up scan an hour later where they saw some sinus rhythm. Yay! After some discussion, they've decided to change Petrina's medication: she's not going back up to the really potent stuff from last week's visit to CCU, but to a mid-level drug. And she's back on the telemetry unit - hopefully with good contacts this time! There's another scan scheduled for Wednesday afternoon.

Praise God:

• For periods of sinus rhythm over the weekend and again today
• That I was able to bring SP in for some good relatively long times with Petrina over the weekend
• For the love and care our family and our church family are showing during this time

Pray:

• That when the new medication starts tonight, it will be effective for baby with no side effects for Petrina
• That SP will cope with starting a very different routine tomorrow, as some of the mums from church help care for him so that I can keep up with normal(ish) work hours.
• That I will cope with SP starting a very different routine tomorrow, and that I won't worry that I'm failing him as a dad by not taking on all his care myself while Petrina's in hospital. (I'm 99% sure intellectually that I'm doing the right thing, but that doesn't make it emotionally easier)

Crash testing: moments of levity and light

I'm sure that through either work or extensive broadcast education (a.k.a. TV watching), many of you will be familiar with the terms "crash" and "code blue". If a code is called, it usually means that a patient is in cardiac arrest and needs attention right now. As in, RIGHT NOW.

However, I say usually, because occasionally things go a little awry. Like when a code was called on Petrina last night at 10 pm. She was fine, sleeping peacefully after drifting off in front of the TV. But the telemetry unit she had to wear for 24 hours was informing CCU that her heart had stopped beating. Well it was certainly beating strong when she woke with a start to see half a dozen people bursting into her room.

For those who missed it the first time, it happened again at 8 am this morning. There she was, sitting in a chair doing her nails, blissfully unaware that the telemetry unit was again reporting no heartbeat.

Well, an hour or so after that they changed the patches where the electrodes are attached, and as far as I know there were no more codes for the rest of the day. Another downside of wearing the telemetry unit is that its range is restricted, which meant that Petrina was confined to a small portion of the ward. What better way to celebrate than to take a tour of the whole ward again?!

Ahh, like I said, moments of levity.

The moment of light is a second hint that we may be reaching a milestone in the treatment. Petrina felt some increased movement again this afternoon and when she asked for a doppler, it showed that baby's heart was indeed in sinus rhythm at the time. Lots of skipped beats, but that's a relatively minor issue.

Praise God for these signs that the medication is starting to take effect. Pray that it will be fully effective and that baby will grow stronger and be able to clear the fluid in time for delivery.

In other news, if anyone wants to hire a 2 year old mowing and whipper-snipping contractor who knows how to follow previously unseen hand signals, let me know. It's not child labour if his mower doesn't actually cut anything is it?

Tonight on 24...

OK it's not that bad, but sometimes it feels like there are similarities. And the last 24 hours have certainly been eventful.

When I posted last night, they were just about to start the IV infusion for Petrina. That didn't go particularly well. My wife is a wonderful woman, and is able to tolerate a lot of things - needles, vomiting, gastro, fatigue; Petrina wouldn't bat an eyelid for any or all of those things. But she draws the line at crushing chest pains. So when that happened 3 minutes after the IV started, she promptly had it stopped. That wasn't an easy decision, but we already knew that this was not the last treatment option, so I think it was the right one.

In the end, she slept quite well in CCU last night. It seems that the beds there are more comfortable than in the Mothers. And in the morning there was a very positive surprise: Petrina had been feeling a lot more activity, and when the specialist came over to do a quick ultrasound, he saw that baby was in sinus rhythm (that's good) with a heart rate around 130 bpm (that's also good). Still some bigeminiy and trigeminiy arrhythmias, but a lot better than it had been. They watched that for about 10 minutes. Very encouraging.

Since the IV was stopped, they moved Petrina back to the Mothers this afternoon. She's back on the previous treatment plan and dose levels, although it will take a day or so to bring levels back up with the disruption of the last 24 hours.

It's sort of a mixed blessing that a doppler check this afternoon picked up SVTs and high rates again. It's a downer because it's not steady sinus rhythm, but it's good in that we haven't spent the whole weekend thinking "the heart's working properly again". My sister said that on the cardiac ward where she works, it's not unusual for patients to flip between SVT and sinus rhythms during treatment. I think... no, I know God knew that we needed a gentle reminder that it's still a long road, and to keep our hope and our focus in Him.

Meanwhile SP isn't saying so, but he's deeply missing his mum. Playing at a friend's house (a very long-suffering friend today) he was quite upset for a couple of hours, until it was clear that daddy was nearly there to pick him up. I took him to the GP this afternoon just to make sure the last few days wasn't anything serious, and she said it's probably just a virus. I'm pretty sure that some of the night-time wakings are to check that daddy's still around to look after him.

CCU progress

Well, Petrina is settled comfortably into CCU now. Although the original plan was to start the IV line immediately after the transfer this morning, the cardiologist decided it was prudent to give that morning's dose time to work further through Petrina's system before starting the new stuff.

The down side is that the 24 hours in CCU only properly starts now, so it will probably be Saturday morning before she's transferred back to the Mothers. And all mobiles have to be turned off in CCU so if you were planning to call or text during that time, you'll have to wait a little for a reply.

The up side is that we may be seeing the first signs of progress. Baby's heart is still in SVT, but the rate is dropping - it peaked around 250 bpm earlier this week, and was at 210 about 20 minutes ago. Around 4pm this afternoon it dipped to 197. Apparently normal heart rate at this age is about 150 bpm.

We continue to be thankful for everyone's love and prayerful support. We're all pretty tired. SP is still a bit crook, but he's eating and sleeping better than he did last night. Personally, I'm thankful for the effort so many people are going to in order to help us, but at the same time I'm struggling with exhaustion and feeling powerless to do much of anything help the three people I love most on this earth.

At least I can deal with the exhaustion by going to bed. Goodnight all!

Coronary Care

This morning the doctors had a case conference about our baby. It's quite humbling to think that all these specialists are caring for our family: paediatric cardiology, maternal fetal medicine, adult cardiology, adult physician, neonatology.

The outcome of the case conference is that they're changing to the more potent drug. To get it into Petrina (and God willing, baby) as quickly as possible, it's being administered intravenously as well as orally. Petrina's been moved to the Coronary Care Unit in the Adults hospital so they can monitor her health properly while they do this. Ideally it will only be for 24 hours, then she'll be able to go back to the Mothers with a wireless monitoring unit.

There will most likely be a scan tomorrow afternoon to see if there's been any improvement. If there is no improvement by Monday or Tuesday of next week, they'll be moving to direct fetal treatment. That won't be easy, but does give the doctors options to treat baby without affecting Petrina's health so much.

Please keep praying.

Latest Update - Addendum

Please pray that God will be at work mightily in our baby's heart tonight.

Following on from the scan earlier today, there's going to be a case conference tomorrow (Thursday) morning between the paediatric and adult cardiologists to determine the best way forward. Two of the options mentioned are to put Petrina onto the most potent of the drugs that I referred to previously, or to do what I assume (there I go assuming things again) will be some sort of microsurgery so that they can inject something (unnamed but I assume [again!] one of the more benign drugs that she's already on) directly into baby's cord or thigh.

From what I've gathered, part of the issue is that all these drugs take a while to work, and the paediatric cardiologist only has 8 or 9 weeks at the absolute outer limit to find the treatment that's effective in our case. Probably only 1/3 to 1/2 that time to find the treatment so that it's still got time to be effective.

Petrina and I were talking about it earlier this evening and we're in amazingly thankful awe of the treatment that she and baby are getting. We couldn't wish for better care. It wasn't our choice to need it - but we're thankful to have a tertiary hospital only 5 minutes down the road.

The question of why hasn't reared its head yet, but it will in time. Thinking about it for a moment just now, it occurs to me that it may be a case like that of the man born blind, and the purpose is that God will be glorified. Or it could be more like Job, who as far as I know never found out why those things happened in his life.

Latest update

Petrina had another scan earlier today. Once again I've fallen into the trap of oversimplifying the possible outcomes.

The results from today's scan are that the SVTs are still there, unchanged. In addition, the heart is dilating and starting to put pressure on the lungs. And because the heart's struggling so much, the oedema levels are increasing, not decreasing.

But, because the latest blood work wasn't back yet, they're not changing the drugs until they see those results and confirm that the doses are at therapeutic levels. So there's probably going to be another scan tomorrow - that will have given a bit more time for this higher dose to work through Petrina's system into baby.

For those who've been asking: yes, Petrina is probably going to be in hospital for the duration.

Sigh...

I miss my wife.

But I am thankful that after running a temperature since yesterday afternoon and a vomit last night, and after lying in for nearly 3 hours past his normal getting-up time, SP seems to be on the mend.

Petrina's settling in to the ward, starting to meet some of the other mums there and getting over some of the aches and pains that have been interrupting her sleep lately.

I think we're due for another scan today sometime; I'm not certain but I think there are basically two possible outcomes:
- some improvement, stay on the current treatment plan
- no improvement, switch to a different drug

Either way Petrina will be in for a while.

Here's an interesting bit of search engine trivia for you too: I was doing a little reading on some of the drugs the doctors have mentioned - just wikipedia level broad brush-strokes; we have a senior pharmacist at church who can go through the details with me. But anyway, searching with google as usual, it auto-completes some suggestions. Now for the first two drugs, I didn't take much notice, except to realise that about halfway through the spelling was slightly different to what I expected. By the fourth search, google had cottoned on to the fact that I was researching cardiac drugs and gave the correct suggestion after only two letters! A good thing too, 'cause I had no idea how to spell that one properly. Kinda cool, kinda scary at the same time.

Please keep praying.

Another day, another twist

Remember how I said I hate rollercoasters? Well this ride is a long way from finished yet.

It was wonderful to have Petrina home for the weekend, and to be able to have everyone come to our place to celebrate my Mum's birthday. Way better to be sitting out in the yard than in a hospital room.

This afternoon we had another scan. Leading in to it we were a little nervous, but generally thinking that even if there wasn't any progress yet the doctors would still let Petrina come home for a few more days until the drugs had had every chance to take effect.

Well, the scan didn't show any improvement, except that the amniotic fluid level was a little high but is now OK. In terms of heart beat and oedema, no change.

I didn't realise at the time, but I guess it's a measure of how serious the problem is that the paediatric cardiologist went and had a conference call with two colleagues and with an adult cardiologist to agree on the best way forward. There are lots of options, each with their own pros and cons to weigh up. At the moment the plan is simply to increase the level of the current drugs. If that hasn't worked within a couple of days, they'll start changing the drug combination to something a little more potent - dropping the "lolly water" component in favour of one that's still relatively benign. If they still don't work there is another drug in a higher class of toxicity, although they don't want to go there if they don't have to. Even "relatively benign" is still strong stuff that needs to be monitored carefully. Balancing treating the baby and keeping Petrina healthy is a difficult task.

It's still a grim situation, but the cardiologist is still confident that they can treat it successfully.

So the long and the short of it is that Petrina's back in hospital again, probably for a longer stay this time.

Please pray:

• That we will keep trusting God
  
• That Petrina will cope well with the increased doses and will be able to handle the stress it puts on her body
• That the drugs will start to take effect on the baby
• That the doctors will have great wisdom in the decisions they make
  
• That I will know how to balance work committments and caring for SP
• Give thanks that the ward staff have been so good in caring for Petrina thus far
  

PS the title for the post came from an observation we made while Petrina was getting settled in the room, that when you're in "the valley of the shadow of death", the path twists and turns around each mountain, making it hard to see where the end is. Give thanks for our Good Shepherd.

A little piece of thankfulness

Random bit of information: I have an naturally fast heartbeat. It's never affected my health or my life generally, except that I had to stay an extra couple of hours in the day surgery after having my wisdom teeth out when I was 17, because they were concerned about it. We have wondered why and never had an answer.

Now, that fast heartbeat may mean that my body is more able to cope with the heart-slowing medications that the baby needs. 

So there's our answer to the 'why' question. God certainly has everything under his infinitely wise control. 

And also a brief update: 

Baby's still kicking, I'm still feeling ok. Both good. 

I have blood tests first thing tomorrow morning, then a scan with the paediatric cardiologist at 4pm. 

I should be able to keep being treated as an outpatient for the time being. But obviously anything could change any time. 

Pray for: 

- blood results to be back in time for the scan. 

- the scan: that the baby's condition would show some improvement, and that we wouldn't lose hope if it doesn't. The digoxin didn't reach therapeutic levels in my blood until Thursday night, so theoretically it could be 7-10 days after that before things start to change. 

- wisdom for the cardiologist, and others treating us. 

- patience and trust. Waiting and uncertainty are hard.

We are so thankful for all of you out there, for your prayers and help and love.

I'm home!

I was praying this morning that I might be able to have a couple of hours leave from the hospital on Sunday to go to church. And God, in his infinite mercy, answered my prayers in a way that I hadn't even considered.

Firstly, a repeat scan this morning showed no significant change in Baby's condition, which we'd prepared ourselves for. We continue to pray that these days are necessary waiting time before the medications take effect. 

But as Dave has said earlier, I seem to be coping fine with said medications, so continuing in hospital is not really necessary, particularly as we live so close by. It looks like I'll be treated as an outpatient for a while. 

It's so wonderful to be home, but it's also scary. It was very comforting to have my vitals monitored regularly, and to know that help was just a call button away.

Pray that we'd continue to trust God with all our lives, whatever his plans for them.

Baby will hold the Duplo and I will build it...

... those words were a random quote from SP earlier today. He doesn't know it, but they've brought us both to tears over the course of the day. How do you explain to a two year old that baby might not be able to play with him? That baby might be going to heaven much earlier than the rest of us? Aand when do you explain something like that?

I could equally have titled this post "I hate rollercoasters". Always have - the big two-loop coaster at Dreamworld, the mine-cart ride, no fun at all. Being at the back end of an aircraft 30 kft above the Pacific Ocean with 140 km/hr winds buffetting is less than pleasant. Being in the back seat of a single engine Cessna when the instructor teaches the student a mid-air restart gives you a definite sinking feeling.

Well the last 12 hours has given us plenty of ups and downs. I'll try and go through them all here, but I may miss one or two.

The day started off positively enough, with signs that Petrina might have been able to come home this afternoon. But that didn't last long, when we then heard that the Drs wanted two full days for the drugs to work before doing the scan.

The next up came when the registrar spoke to the "big boss" and shortly after Petrina was scheduled for a 10:00am scan. Just sneaking in between outpatients, but the hope of coming home was back.

Then the scan.

It started OK, with just a simple ectopic beat (like SP had, and apparently most of us have from time to time). But it didn't take long for the irregular beats to show up. And all the oedema is still there.

They let Petrina out for a few minutes while consulting with the cardiologist, which is when I came in to the hospital. After some additional checks on the ultrasound, we learned that Petrina would have to stay in until at least Monday, when they will do another scan with the cardiologist present (I think). Given that we were starting to prepare for an emergency delivery, this was relatively good news.

The specialist doing the ultrasound said that right now it looks bleak, but in the womb surrounded by prayer was definitely the best place for baby to be. There is a small chance that it will die in-utero, but less chance that if we delivered now.

All I can say is thankfully the day didn't end there. Petrina has a great job working at the Mater's Growth and Development unit, where she rubs shoulders with some world class physios, psychs, and paediatricians. One of those doctors was able to come up and talk through the scan results and what might be ahead of us.

The summary of that discussion is:
- The drugs Petrina is on haven't taken effect yet. And even if they had, it's normally 7-10 days to see results.
- The cause of the irregular beat and the oedema may be linked, but not necessarily. Apparently oedema is usually associated with anemia. We'd assumed that the oedema occurred as a result of the heart failing to keep up. But, it should still clear as the heart gets back into rhythm and gets stronger.
- Because the heart is not working properly, there's a chance that the baby may have some form of disability.

So, we're back to a wait and see case. Petrina's in until Monday at the earliest, and that assumes the drugs come up to effective levels soon enough to show results in the scan.

Thank you for your prayers so far. We're finding things pretty draining emotionally. Please keep praying for us to trust God completely and that the scan on Monday will show that the drugs are starting to have the desired effect.

Boy or Girl? (by Petrina, posted by Dave)

It seems that when an unborn baby is in troublem its parents typically announce its gender and name before it is born. I [Petrina] was actually discussing this with a friend a couple of months ago and though we both prefer not finding out the gender under "normal" circumstances, we agreed that with a sick baby, we would want to.

Now that I'm in that situation, I disagree with myself.

The thing I liked most about not finding out SP's gender before birth was the moment of delivery, when he finally arrived. After all the waiting and longing, "it's a ..." were some of the sweetest words I'd ever heard.

Whether this baby comes out healthy, sick, or stillborn, it will still have a moment of birth. And whatever happens, I still want my moment of hearing those sweet words again as we meet our little one face to face.

Update #1

Thank you to everyone who's praying for us and our baby.

Give thanks that the first step of treatment is going well: Petrina is coping well with the heart medication, and doesn't appear to be experiencing any side effects.

Pray that the drugs will carry through to the baby and have the desired effect in its little heart.

Please Pray for our Baby

Our precious unborn child has heart failure. Its little heart is moving through many different rhythms and its body is swollen, with fluid gathering under its skin and around its organs.

I've been admitted to hospital for a couple of days, and the doctors are working to find the dose of medication that will help the baby's heart get back on track without harming mine. When (if) they can do that, we pray that the baby will heal sufficiently in its present home before coming into the big wide world. Some staff seem very optimistic, others not so much.

We are so thankful that God has all this absolutely under His control, and that He has had this little one's life planned out since before the beginning of time.

Please pray that our baby will be healed and that we will trust Him and His plan. Pray also that we will have opportunities to share with those around us the reason for the hope that we have.

May God be glorified.



---------

Petrina wrote that from hospital this morning and asked me to post it for her. At the moment the possible outcomes range from a small but otherwise healthy baby, to stillborn. We just have to trust God for the final answer. But as she said, we're amazed and so blessed to live in a country where we have this sort of medical care; where the doctors can look at a scan and see a problem, and know that if they give Petrina certain drugs, they will get through to the baby as well.

Dave

Mobile computing

We've got a new computer. A laptop :)

I've had a laptop before, a hand-me-down from my wonderful uncle, but it was never fast and lost the ability to work without a power cord some years ago. 

Right now, I'm sitting on the couch, on the computer. And it's plugged into nothing. 

Nice :)

Feeling more organised

I had my Glucose Challenge test today. In the quiet hour between drinking the bottle of Lucozade & having blood taken, I organised myself a bit of a weekly plan for now until Christmas, a la The Planning with Kids Blog. Except mine is a plan for pre-baby as well as pre-Christmas tasks. 

There's actually not as much to do as I thought there was, and it all slots quite nicely into the coming weeks. 

Now to action it. 

And if baby comes before Christmas, I guess there'll just be things left undone :)

I shouldn't complain

Because God says not to. 

And also because I'm pretty fortunate to have a 2 year old who can dish up dinner for me. 

I'd like less help around the house

Particularly in the kitchen.

2 year old help, that is. 

I know it's great that SP is into cooking, and all other domestic things, but sometimes I'd really like to cook alone without having to wait until he's asleep or in rest time. 

From the back seat

"Jack and Jill went up the hill to fetch some pail of water
Jill fell down and broke her crown and Jack came tumbling after."
(much laughter)
I mixed up the song! I made it sound funny!
I'm a imposer [composer] like Uncle Phil! 

We're back from holidays

• 3 days drive down to Melbourne
• 6 days there
• farm, train & tram adventures
• a wonderful wedding
• many catch-ups with family & friends
• 2 days driving back
• 1 day home
• a move to the big boy bed

• one happy (and tired!) family :)

Ooh, I won something!

Thanks to Squiggle Mum, we'll soon be transporting our food in cloth lunch bags from A Good Wrap. Nice!

I'm just quite excited, I never seem to win anything :)

After Independent Play this morning...

"I'm been taking things out!"

It really does make a difference

After reading The Sweet Poison Quit Plan, I've been fructose free for almost 2 months. And feeling really good. 

Yesterday morning I had a cup of tea with sugar in it. 

I've been awake since 2am, with nausea returned full force. 

I had been planning to have a sweet treat at Phil's wedding reception, but now it doesn't seem so attractive...