We moved down to the babies ward, Rose Ward, on the 20th of October. It really hasn’t been any change from PICU as Zoe’s still 1:1. Her dialysis is too time consuming for a nurse to look after any more patients. She’s done really well over the last week or so. Her urea’s come down to 6.8 today. This is the blood result that the renal doctors are really concerned about, as this can affect growth and development. They’d like it to sit at about 10, which is still higher than what a person with healthy kidneys would have, but is a good level for a child with renal failure. She hasn’t looked puffy for a good while now. She passes some small amounts of urine, which, although good, I’ve been told not to get too excited about. She still has an issue with hypernatremia- low sodium- so she’s on sodium supplements for that. She also has low calcium, which is apparently a common issue in kidney kids, so she also takes calcium and vitamin D supplements, and has an injection of erythropoietin once a week to encourage production of red blood cells- children with kidney issues often have low haemoglobin (the oxygen carrying protein in red blood cells) levels.
As of last Friday the 24th, we’ve been able to have some breaks from dialysis. They started off with four hours on Friday and, as her blood results looked good still, trialled her with an 8 hour (!!) break today. I’m praying her blood results stay looking good so we can keep these 8 hour breaks. It’s wonderful, I felt like I had enough time to take her out and do something, come home, eat lunch..and so on…without needing to rush back. I love taking her out and feeling ‘normal’ so to speak, for a few hours. There are still plenty of reminders that it’s not ‘normal’- her NG tube and her PD catheter are immediate giveaways! As are her tube feeds. It’s almost impossible to disguise holding a syringe attached to a NG tube up in the air.
Zoe’s got a long road ahead of her still. I get really upset and overwhelmed at times thinking about it all. Basically we’ve been told that she will probably need to stay in hospital for six months- so roughly until next Easter. This is to give her time to, firstly, grow enough to allow them to start her on overnight PD only. She needs to be big enough to allow them to put larger volumes in to enable this to happen. She also needs to be big enough- about the size of an average six month old- to go on the automatic PD machine they want to send us home on. Hourly PD cycles with clamping and unclamping the tubing three times an hour just aren’t feasible for us to do round the clock at home.
Ultimately her aim is to put on enough weight for a kidney transplant. She’d probably need to be a minimum of 18 months for that, but it seems that a bit older than that is more common. Following that, she’d need to be on immunosuppressants for the rest of her life to stop her body rejecting the transplant, as well as likely needing blood pressure medications as well (as the kidneys play a huge role in regulating BP). A transplant doesn’t last forever though and it’s likely she would need another transplant by her 20’s at least.
One thing about a kidney transplant is that it’s possible for one of us to donate to her, provided one of us is a match. That’s reassuring in a way that we might not have to wait for one to become available, but even then there’s so many questions. Obviously you can only donate once- what if only one of us was a match with her, do we donate the kidney now while she’s small and let the future sort itself out later or keep ourselves for later on down the track when she might need another transplant more urgently? Given that she’ll likely need more than one transplant over the course of her life. These are questions that there’s no point in worrying about right now, when we don’t even know if we’ll make it as far as a transplant, but it’s hard to stop myself from driving myself nuts thinking about it.
It’s Zoe’s due date this week. She would have been due somewhere between the 26th (my calculated date) and tomorrow, the 30th (based on an early scan). It seems so surreal that I would only be due now, and, given as how I went a week over with Annika, would probably still be pregnant for another good week yet. Sometimes I wonder what would have happened if we hadn’t found out about her kidneys. If I’d been having kids forty years ago I wouldn’t have known until she was born. I’m glad we did know though. Sure, I would have actually enjoyed my pregnancy, but I can’t imagine having the house all set up for a baby, going into hospital expecting to have an uncomplicated delivery and to be discharged in four hours, and then finding out about all this. It would have been worse as, if she had survived, we’d have ended up getting retrieved to Adelaide and I don’t even want to imagine how horrible that would have all been, going through all that unexpectedly after giving birth.
I’ve become so attached to Zoe. I didn’t bond with her before she was born, and I think I kept myself from doing that as a form of protection. I feel horrible about doing that now. She is the most beautiful little thing and I have just fallen so in love with her. It scares me a lot- I know she might have made it this far, but I still know how far she has to go, and I’m scared that I might have to say goodbye to her a long time before I want to. Not that I ever want to. I just want to hold her and never let her go.
I lift up my eyes to the mountains—
where does my help come from?
2 My help comes from the Lord,
the Maker of heaven and earth.
3 He will not let your foot slip—
he who watches over you will not slumber;
4 indeed, he who watches over Israel
will neither slumber nor sleep.
5 The Lord watches over you—
the Lord is your shade at your right hand;
6 the sun will not harm you by day,
nor the moon by night.
7 The Lord will keep you from all harm—
he will watch over your life;
8 the Lord will watch over your coming and going
both now and forevermore.