so I’ve got my next appointment tomorrow…
So hard to not ring and cancel. But it’s been six weeks since I went down and I probably am leaving it way too long between antenatal appointments if I leave it any later, especially at 31 weeks.
Why don’t I want to go? I think I’d be happier being like an ostrich at the moment, that hides their head in the sand to avoid what’s going on around them!
(Not that I’m sure if they really do that..but still!)
I guess I’m just too scared to find out anything more. Too scared to see whether my amniotic fluid levels are going up or down.
It seems a funny juxtaposition- on one hand I want to bury my head (or crawl under the bed and not emerge again) but at the same time I want to know everything. I want them to tell me exactly what’s going to happen, and when. I don’t want any uncertainty. I either want it one way or the other- avoiding everything as much as possible or knowing everything. That sounds really strange. Emotions all over the place, much?
And I know they’re not going to be able to tell me that. They won’t tell me anything I want to know, maybe a couple of things I don’t want to know/ don’t want to hear about that’ll further mess me up, and I’ll leave wondering why in the world I drove 3.5 hours each way to go to this thing, apart from to get ticked off to say I rocked up to an appointment.
Jesus, I am really going to need you to get me through tomorrow, in fact even to get me there in the first place.

My grace is enough; it’s all you need.
My strength comes into its own in your weakness.

2 Corinthians 12 (MSG)


1 john 4: 7-21

Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. Whoever does not love does not know God, because God is love. This is how God showed his love among us: He sent his one and only Son into the world that we might live through him. This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins. Dear friends, since God so loved us, we also ought to love one another. No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us.

We know that we live in him and he in us, because he has given us of his Spirit. And we have seen and testify that the Father has sent his Son to be the Saviour of the world. If anyone acknowledges that Jesus is the Son of God, God lives in him and he in God. And so we know and rely on the love God has for us. God is love. Whoever lives in love lives in God, and God in him. In this way, love is made complete among us so that we will have confidence on the day of judgement, because in this world we are like him. There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.

We love because he first loved us. If anyone says ‘I love God,’ yet hates his brother, he is a liar. For anyone who does not love his brother, whom he has seen, cannot love God, whom he has not seen. And he has given us this command: Whoever loves God must also love his brother. 1 John 4:7-21

I’ve been struggling to bond with this baby. Compared to how attached I was to A at this gestation, it really scares me in a way just how hard it is to bond. It hasn’t just been since we got our diagnosis at 21 weeks either, it’s been all the way through. Maybe subconsciously I knew something wasn’t right? But I don’t see why that should have made any difference, given I imagined things going wrong all the way through with A as well.

I wonder if not knowing boy/ girl has influenced it somehow. Although I did get a shock when we found out A was a girl (I would have put money on her being a boy, so that was a surprise, as well as knowing that I really couldn’t trust my instincts on baby gender!) I think being able to imagine her with an identity- picking out a name, getting girly things ready and imagining her in her girly room in girly things did help. I originally wanted this baby to be a surprise, so it’s funny that I should be saying this now, especially after spending the first 20 weeks of this pregnancy debating with M whether or not we should find out. After the diagnosis, though, I think we both just wanted to know. Not being able to find out (3 ultrasounds and no one’s been able to tell) has been hard. I feel like I could handle not finding out in any other ‘normal’ healthy pregnancy but this time round I think we both just need to know. As I might have said earlier, I think it would make it a lot easier for M to be able to bond as well.

I don’t think I would feel as guilty about not bonding with this baby if I knew the pregnancy was looking healthy so far and there was no reason they wouldn’t live a good 75 + years this side of heaven. Knowing that his/ her time is very limited makes me guilty that I’m not making the most of this time now by bonding with them and loving them as much as possible. In the book I’m reading (A Gift of Time- highly recommended so far) people are taking their babies to the zoo, reading to them, going on holiday with them, doing everything they might not be able to do later. All very well if it’s your first baby I say. I honestly don’t have time to read books especially to baby, given that I probably read 20 a day to Miss A I’m just going to have to say that I’m reading to both of them at the same time. (Hope baby doesn’t mind skipped pages and half finished books- such is the attention span of a 2 year old).

Thanks to the resources I’ve found, I’ve been beginning to…sort of…think about what we could do for/ with baby at the end, if their time isn’t going to be very long. It’s hard because we just don’t KNOW. Are they going to be stable, and will a good outcome look likely enough that we’re going to say that dialysis/ NICU are worthwhile? Or not? Or if not how long will they hold on? I know I should get going and get some little outfits, maybe a little blanket or something. I’m really struggling, as I don’t know what to buy. When do I expect them to come? Given my history I could probably go 41-42 weeks, but is it likely in this case? And what size do I buy? A was in 0000’s at birth and they were pretty big on her, but if they’re going to have a distended abdomen due to the large kidneys, am I even going to be able to get 0000’s to do up around the waist? And I don’t even know what gender to buy. I’ve seen some cute unisex stuff in the past, but nothing recently. And then I don’t want to put a girl in it, if baby is a girl. And I don’t want to buy heaps of stuff, or heaps of sizes, as I don’t want to have heaps of stuff at home if I don’t have a baby to take home. Do I take the car seat in to hospital? I bought one early, early on but it’s sitting in the garage collecting dust. I don’t want an empty car seat in the car on the way home, but at the same time on the slim chance we do get a take home baby it sounds dumb to spend $150+ on a new seat just because we left ours at home. What about nappies? I don’t want to buy a whole box of newborn ones. I’d be happier with just a handful. I don’t think Huggies will like me only wanting to buy 1/10 of a box though. Maybe I can give the rest away or something before baby is born so I only have what I need and don’t have to come home to it. I know this sounds like small stuff that I shouldn’t be making such a big deal about, but it’s bringing me to tears just thinking about it. I’ve been thinking about it once every few days recently but I only ever get this far before it gets put in the ‘too hard’ basket and left for a few more days.

I’m looking for scripture that I can read to baby though. Things to read to let them know that they are loved and what heaven will be like, how much God cares for them. I came across this passage from 1 John this morning and decided I had to make a note of it to read to baby. Most of it anyway. From verse 18 onwards it speaks mainly to me.

Verse 18 ‘There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.’

Am I afraid? Yes, hugely. I’m scared of the unknown. I’m scared because it seems no one can tell me exactly what’s going on. I’m scared of going down for my next appointment tomorrow- it’ll take some supernatural strength for me not to ring and cancel it again. I’m scared of baby lingering on and on, in some slow death. I’m scared of not knowing when to expect to deliver. I’m scared of the effect it might have on A, growing up maybe never knowing her younger sibling.

Perfect love is something I don’t have. Obviously! ‘The one who fears is not made perfect in love.’ It’s something only God can do. I have to trust that He loves this baby, perfectly, and that there were no mistakes, none at all, in this entire thing.

‘..because fear has to do with punishment.’ It’s so easy for the lies of the devil to come into this. Time and time again I have to tell myself NO, this is not happening because of anything you did. Those little lies just keep sneaking in again and again though.

‘…remember early on in this pregnancy you were wondering how in the world you were going to handle two kids, when you struggle to handle one half the time? Well you don’t have to worry about that anymore…’

Lies, lies, lies. This is probably one of the hardest things for me to get my head around, that I’m not being punished for anything. That if we’d conceived the month before or started trying a month earlier or left it a while we might now have a healthy baby on the way. That it was due to something I took or didn’t take. Should’ve taken more multivitamins, eaten less salt. NO! It’s not due to any of that. I can’t explain why. We live in a fallen world. Sickness and death is a result of the Fall. Not that that is very comforting to me right now.

I do…and this I really do believe, I don’t doubt this at all, although I am still struggling to see the exact logistics…that God will touch more people with this baby’s medical conditions and shortened life than he would if I was having a normal healthy pregnancy and having a baby with a normal life expectancy. I don’t know how he will, who he will touch, etc. I don’t know any more than that. But that I really do believe.

You’d think that would be enough for me, just knowing that. Because I am such a broken person, though, it’s not. Too many other things make this one thing I do know and believe, that should be giving me perfect peace in this situation, hard to see a lot of the time. All the fears, lies, emotional turmoil is taking its toll and really messing me up. I have to be really conscious to take time for myself to really stay connected to God to get me through this. And every day’s still a struggle. Every hour sometimes.


2 corinthians. beautiful words

This is what I was reading today…I found it comforting. Isn’t it wonderful how God knows just where to direct us in his Word for what we need?!

…because we know that the one who raised the Lord Jesus from the dead will also raise us with Jesus and present us with you in his presence. All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.
Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. Meanwhile we groan, longing to be clothed with our heavenly dwelling, because when we are clothed, we will not be found naked. For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed with our heavenly dwelling, so that what is mortal may be swallowed by by life.
2 Corinthians 4:14-5:4

getting easier. in a way

It’s been a couple of weeks (again) since I wrote anything. I’m actually doing pretty well under the circumstances. I’m 31 weeks now, and I’ve had more than two months to deal with the diagnosis and accept the reality. Sure, I’m still struggling with it all. I’m still struggling with the uncertainty. With the likely bad prognosis. Dreading what might be to come. Grieving the future with this baby that we more than likely won’t have. How it’s going to affect A.

Although, it’s getting easier in a way. Since I turned 30 weeks I haven’t been able to hide this bump any more. It’s like something happened and I just popped out. God was certainly merciful in letting me hide it for so long, though. I can’t remember when I popped out with A, but it was definitely much earlier than this. Being winter still, I can still sort of semi-disguise it under long scarves and cardigans, but there’s no hiding the fact that I’m getting to be quite heavily pregnant. But, here’s the funny thing, I’m not dreading people commenting any more. I can actually smile and answer people’s questions (to a certain point) without getting upset about it, and without feeling the need to get into too much detail about it. There are some comments (‘You’re going to be busy!’ ‘Is A excited about a younger sibling?’) that make me still cringe slightly, but I can answer simple stranger’s questions about how many weeks I am, is this my first baby etc much more easily now.

I still don’t know what to expect. It’s really hard to find people’s stories of bilateral MCDK. I guess as the vast majority of babies are terminated, there really isn’t much online. I found some stories in the medical journals but the details are only sketchy at best, and not very optimistic. There don’t seem to be any support groups online specifically for this condition- not any that I’ve been able to find anyway, and I’ve searched Google so many times I think I must be going slightly crazy. I’m supposed to be going back down to Adelaide on Friday, which I’m really dreading, but as I cancelled the last appointment and it’s now been six weeks since I was last down there I suppose I had better go. In a way I want to know everything…but in a way I don’t want to know anything. I think leaving my appointment last time being so disappointed they couldn’t give me any more information didn’t help either. This time I’m going to gear myself up for coming back from Adelaide on Friday afternoon none the wiser as to when I went down on Friday morning and hopefully I won’t leave as disappointed this time.

what’s really important

Just a reminder to myself of what is THE most important thing.
What is eternal…
What I should remember to be more thankful for…
Why even in ALL circumstances, including this one, I should be rejoicing, because the most important problem I’ll ever have, the one that overrides all others, including this one, has been taken care of, put aside through the blood of Jesus. I HAVE BEEN REDEEMED.

‘You see, at just the right time, when we were still powerless, Christ died for the ungodly. Very rarely will anyone die for a righteous man, although for a good man someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us. Since we have now been justified by his blood, how much more shall we be saved from God’s wrath through him! For if, when we were God’s enemies, we were reconciled to him through the death of His Son, how much more, having been reconciled, shall we be saved through his life! Not only is this so, but we also rejoice in God through our Lord Jesus Christ, through whom we have now received reconciliation.’ Romans 5: 6-11

This is beautiful. Just beautiful.
Selah- Before the throne of God above

‘But now a righteousness form God, apart from law, has been made known, to which the Law and the Prophets testify. This righteousness from God comes through faith in Jesus Christ to all who believe. There is no difference, for all have sinned and fall short of the glory of God, and are justified freely by his grace through the redemption that came by Christ Jesus.’ Romans 3: 21-24

My name is graven on his hands, my name is written on His heart!
Because the sinless Saviour died, my sinful soul is counted free..For God the just is satisfied to look on him and pardon me
One with Himself I cannot die! My soul is purchased by His blood, my life is hid with Christ on high, with Christ my Saviour and my God.

I could just keep writing lines and verses that are speaking to me today…thank you Jesus…this reminder was well needed today.

29 weeks thoughts

It looks like I don’t have gestational diabetes. I went and did the glucose tolerance test (that horrible sweet Carbotest drink followed by bloods) and got the result yesterday, all fine.

I’ve been so used to things going wrong this pregnancy I had sort of convinced myself I probably had it. I didn’t even care too much, scarily enough, just another addition to my list of problems.

I also had antibodies come back negative (being of a RhD negative blood group) (also another problem I’d half convinced myself I’d have) so had that anti-D jab yesterday as well. For a cute distraction, A hung over the side of the bed and, looking up from munching on her Freddo Frog, commented most appropriately ‘Ouchie.’ Cuteness plus!

I’m supposed to go up to the WCH tomorrow, but I 1.don’t feel like it 2. am working tomorrow anyway, so I’m going to try to reschedule it for next week sometime or something like that. It seems pointless going anyway at the moment. I doubt they are going to give me any groundbreaking new developments one way or another…it’ll just be reiterating the same stuff that I already know.

This is a bit of a pessimistic post- I guess I’ve just had enough at the moment. I’m 29 weeks, I’m having trouble hiding the baby bump, I don’t even know if it is a boy or a girl, I have a non sleeping toddler that is going to be Little Miss Grumpy by 3.30 if she doesn’t have a sleep, I’m over having to look happy and excited for everyone else’s babies and healthy pregnancies. Just over it all.

I guess on a positive note this book arrived yesterday and I read some of it. It takes you from the early days, at the diagnosis right up until birth (and after I think? Can’t quite remember) I’ve read up until where I am now in this journey and it is so relatable. It’s nice to know I’m normal and that it’s not weird to jump back and forth with emotions etc. I’ll post some thoughts and things I’ve found out from that book at some point. Now I’m at the part of the book that relates to the part of the journey I’m not yet at I’m finding it harder to relate (understandably I guess?…) It’s a good book though, so I’ll persist with it and see how it goes.

on a different note (part 2)

Horse pulling the Granite Island tram at Victor Harbour- or 'pony' as A kept calling it. I'm not sure where the distinction between horses and ponies lies, but I'm pretty sure Clydesdales aren't ponies!

Horse pulling the Granite Island tram at Victor Harbour- or ‘pony’ as A kept calling it. I’m not sure where the distinction between horses and ponies lies, but I’m pretty sure Clydesdales aren’t ponies!

'A, do you want to be in a photo with Mum & Dad?'  'NNNOOO!'

‘A, do you want to be in a photo with Mum & Dad?’

Murray River mouth- Hindmarsh Island. Glad we got to go here!

Murray River mouth- Hindmarsh Island. Glad we got to go here!

A surprise ferry ride for us- we unexpectedly came to the river and what looked like a dead end road. Turns out it was a car ferry across the Murray.

A surprise ferry ride for us- we unexpectedly came to the river and what looked like a dead end road. Turns out it was a car ferry across the Murray.

Me and A (who's actually trying to get away) at the Blue Lake, Mt Gambier. More grey/ green at this time of year.

Me and A (who’s actually trying to get away) at the Blue Lake, Mt Gambier. More grey/ green at this time of year.

How could we not get a photo?

How could we not get a photo?

A meeting a black swan- Mount Gambier. (Outside the best playground we found on our travels, but I couldn't get a photo to do it justice!)

A meeting a black swan- Mount Gambier. (Outside the best playground we found on our travels, but I couldn’t get a photo to do it justice!)