Monday, October 31, 2011

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.

Sunday, October 30, 2011

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.

Friday, October 28, 2011

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.

Thursday, October 27, 2011

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.

Wednesday, October 26, 2011

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.


Wednesday, October 19, 2011

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 :)

Monday, October 17, 2011

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 :)

Friday, October 14, 2011

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. 

Thursday, October 6, 2011

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!