2 samuel 12:13-17

I might come back to some of these verses, and write a bit more on them, in the future. Right now I’ve just been looking at 2 Samuel 12: 13-17. I think I need to write a bit about some of the verses that I’ve been looking at/  have been pointed out to me- sometimes it helps to actually see something about them written down, even if my thoughts are a bit all over the place at the time.

Then David said to Nathan, “I have sinned against the LORD.”

Nathan replied, “The LORD has taken away your sin. You are not going to die. But because by doing this you have made the enemies of the LORD show utter contempt, the son born to you will die.”

After Nathan had gone home, the LORD struck the child that Uriah’s wife had borne to David, and he became ill. David pleaded with God for the child. He fasted and went into his house and spent the nights lying on the ground. The elders of his household stood beside him to get him up from the ground, but he refused, and he would not eat any food with them.

I guess there are some pretty obvious differences between my situation and David’s situation here. I mean, this isn’t a DIRECT result of some specific action like David’s adultery with Bathsheba, (although I know it’s a direct result of the Fall and sin entering the world…but apart from Eve eating the apple it’s not like it can be traced back to one specific thing I did, like drinking a massive amount of alcohol in first trimester or anything (which, for the record, I didn’t)).

But rather than point out the differences, which I could probably spend all of A’s ‘rest time’ doing, I want to point out what I got out of it. This is the couple of lines that really spoke to me (the rest I really just popped in for a bit of context)

David pleaded with God for the child. He fasted and went into his house and spent the nights lying on the ground. The elders of his household stood beside him to get up from the ground, but he refused, and he would not eat any food with him.

I don’t intend to mirror David’s exact actions, but it appears that David did everything he could for the child. In an era devoid of the medical knowledge, specialist referrals, drugs, rah rah rah and everything else we have now, David only could turn to God. He pleaded, fasted, lay on the ground humbling himself before God for the child. In short, I’m not sure he could do anything else for the child. Write a psalm? (As an aside, after I wrote that I looked it up and it turned out he did – Psalm 51). So, everything he could do.

This spoke to me earlier on last week, when we were still figuring out what to do re. Terminate or not. This is quite hard for me to write. I have always thought of myself as the sort of person who WOULD continue with a pregnancy with huge medical problems. But, I hate to say, after our appointment the week before last we did actually give serious thought to terminating. Somehow the lines of what I once thought were black and white became a slightly blurry shade of grey after meeting with different specialists who all told us that it would be a ‘very reasonable thing to do in these circumstances’ hearing about the poor prognosis and likely that baby won’t live long even if I was to carry to term, and the worst- what if we have to choose between palliative care at birth and a slow death vs. a death now which would at least be quick. Trust me, it’s pretty horrific when what you might actually be forced to do is choose the way in which your baby dies (and if anyone reads this I apologise for writing in such a blunt way).

Ultimately, after much prayer, tears, sleepless nights, (aren’t I sounding dramatic) we decided to carry on and give baby a chance. This is where this passage speaks to me. David did everything he could for the child. By terminating, would I be doing everything I could for the child? Definitely not. Although the prognosis wasn’t what we wanted to hear, the specialists couldn’t tell us 1oo% exactly what baby’s renal function would be like at birth and what exactly would happen. Plus, God CAN and does work miracles. We need to hang on to that little bit of a chance- that little bit of hope and, although our hands are really tied as to what we can do at 22 weeks, terminating isn’t doing ‘everything we can do for the child’. Continuing with the pregnancy, and lifting it all up to God, IS.

I probably sound really optimistic right now, and there’s a good chance the next post I write won’t be half as optimistic. I’ve been going through some really difficult days and I know they’re nowhere near over yet. Writing about how a passage of Scripture is speaking to me really does help, I’ll do that again. But for now, I know I need to do everything I can for this baby. By lifting the child up like David did; by pleading with God for the child; and by ultimately continuing with this pregnancy and, whether He does or not, playing my part and giving God the room to work a miracle.

 

 

 

 

 

 

end of june

Well the weekend came and went. We had friends from Queensland stay which was lovely (and distracting!) the first people we’ve had visit us since we moved here, so we were realllllly excited. A had an absolute ball of a time playing with their little boy too. I couldn’t believe how well they played together- when we moved here they were really too little to do much interacting at all, now they had a great time zipping around together getting into everything (with only the occasional toy dispute!)

I’ve just realised this morning that my next appointment is in only 2.5 weeks. That’s in just a scarily short amount of time that we find out how baby has been going since the last scan. On Saturday school’s out for the July holidays, meaning M gets a couple of weeks of work. I’d booked in for annual leave for the first week of the holidays too, which for some reason I managed to get (not an easy thing when you’re a nurse!) The original plan, booked ages ago, was to go see the south-east corner of this state: starting off with a couple of nights in Adelaide with friends, then heading down to Kangaroo Island, then down to Mount Gambier, then back through Adelaide to the Barossa Valley to stay with another friend for a couple of nights. I think we’ll still go- on most of it anyway. It seems silly to sit around at home all week thinking about things when neither of us have to work. But we’ll have to end it off with our last hospital appointment in Adelaide, which, to be honest, I’m really dreading.

friday

The WCH made an appointment for us next Tuesday to see the neonatal team and pall care.

I called them back today and asked if we could do that later. I just don’t think I can handle seeing them next week.

They’ve made an appointment for another scan and seeing how baby is going on the 17th of July. Last Thursday of school holidays. We were going to be staying with a friend in the Barossa the night before, which is a lot closer to Adelaide than we are, so that works out quite well. They were really lovely about me not wanting to see the neonatal/ pall care teams not just yet. They talked to me for half an hour. I felt really bad because I’m sure they have plenty more things to do with their day rather than talk to me, but they were really lovely, kept asking questions and didn’t try to get off the phone or anything. Told me to call back if ever I needed to talk again.

 

 

revelation 21 verse 4

He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.

I read this verse this morning.

How I want that day to be here.

heartbroken.

So it’s been one week since we found out. One week that has been the longest week of my life. I’ve still got I have no idea how many weeks to get through like this.

On Wednesday, June 18, I went to pick up my scan results from my 20 week scan. La la la…biggest worry was keeping my toddler busy before she made a mess of the place. Well, little did I know. Fifteen minutes later I left in shock, trying to stay calm and telling myself the scan results were probably a mistake and due to a bad picture, or they wrote the wrong results on the wrong person’s scan report, or something.  Twenty minutes later I got a call from the Adelaide Women’s and Children’s Hospital. Can you come in first thing tomorrow. Okay….now that was scary. Tertiary  hospitals don’t usually call you within half an hour of a referral being faxed through. Let alone tell you to come in first thing tomorrow morning.

Thursday, June 19, we had a two hour long scan. Radiologists in the room making sure they got the pictures they wanted. I could see the problem from where I was lying. The scan results looked like they were correct. An hour later, we found out for sure that our unborn baby has massive medical problems. Something called bilateral multicystic dysplastic kidneys. Basically, there are big problems with both kidneys. The left kidney is 6cm long (whereas a healthy newborn’s kidney is 2cm long) and is covered with cysts. They don’t think that kidney’s working at all. The right kidney is 4cm long and also has multiple cysts. Technically that kidney shouldn’t be working either. But because they could see a little bit of urine in the bladder…and my amniotic fluid levels were all right (lower than normal, but all right) they think that kidney might still be holding up at the moment.

(Small amount of fetal A&P here….basically in second and third trimesters the amniotic fluid is almost entirely baby’s urine. Baby swallows amniotic fluid, which helps with its lung development, and it is filtered by the kidneys and comes out again and is swallowed again and so on and so on).

It’s just IS that kidney going to hold up, and if so how long, and how much renal function will baby have when s/he is born, and what about lung function, and are there any other comorbidities (they couldn’t see anything but they were quick to say that doesn’t mean there aren’t) and what do we do? It’s not looking good. Most babies with bilateral multicystic dysplastic kidneys die. They said our chances of taking a healthy baby home are very small. Best case scenario: baby is born with enough renal function to feed normally and put on enough weight to make a transplant (Adelaide wont’ transplant kidneys for children weighing less than 10kg. Westmead Children’s in Sydney might do it at 10kg, but no one in Australia would go lower than that.) But that is a slim, slim chance we would ever get far enough to be eligible for a transplant.

And then what are the other options? If bub is born alive but with minimal or no renal function, we would have to choose between dialysis or palliative care from the word go. Dialysis would be likely to be a dead end street. Maybe I worked in paediatric ICU too long. But I can’t see a sick baby that needs dialysis from the word go ever putting on enough weight to be eligible for a transplant. But is palliative care any better? If baby’s lungs are doing ok, and its kidneys are the only thing wrong, then I’m scared baby could survive for weeks, months. I looked after an old lady a few months back who had refused dialysis and died slowly of renal failure. It wasn’t pleasant. Of course, is it ever? But I don’t want to put baby through that either.

They were quite quick to offer termination. Which is something I never thought I’d even consider.  But when it seems pretty much hopeless on all sides, and all the specialists you’ve seen are telling you it certainly would be a “very reasonable option in these circumstances” what do you do?

We went home and wrestled with it for days.  No one really wanting to say anything to each other. We finally decided last night to continue and give baby a chance and see how s/he goes. I called them back this morning. They’ve been wanting us to make a decision. In South Australia it is very hard to terminate later than 23 weeks, which I’m probably close to at the moment, so although they’ve been very nice about it, I have felt the pressure for them wanting to know soon if we decided to go down that path. But I know in the end, I just couldn’t do it. Baby deserves a chance. You never know. Maybe God will work some miracle or maybe everyone will  just be plain wrong? Slim I know. But I couldn’t live with myself knowing I never gave baby that little, tiny, tiny, chance.

They called back while I was writing just before. They are really lovely, which made me cry again. Fortunately the lady on the phone, who we didn’t see last week, had read our file and so I didn’t have to explain the whole story. I said we wanted to continue and I think that’s about all I was capable of really saying. They want us to come in again next week and see more specialists. Palliative care was mentioned. I couldn’t handle it and started to cry again.

I don’t know how I’m going to do this. I just don’t.