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.