real food

We’re still at home! 15 days now and counting. Zoe’s appointments have been going well and they couldn’t be more happy with her. I’m so proud of her!

Zoe’s started looking most intently at my food, (particularly coffee…she seems to have an eye for that as does Annika. Give it a year and I’ll have to buy her a Babychino as well!) so I’ve started trying her on some solids. I don’t have much experience starting solids. Annika was a terrible eater- not interested in any solids until seven months old, and then refused to eat anything but strawberries for the next few months- so just having a baby that looks interested in food is a novelty to me.

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I’ve started off by just giving her some food that we’re eating- plain rice noodles, avocado and carrot slices and so on- and letting her play with them. Plain rice noodles have been the most popular so far. They’ve made it as far as her mouth but I doubt she actually ate any of them, just squished them a bit. I did have a moment yesterday where I thought she ate her avocado but it turns out that Annika got sick of waiting for her to eat it and polished it off herself.

I’ve been told not to worry about what is in the food (potassium wise being the main thing- Zoe can have trouble getting rid of potassium) as it’s unlikely she’ll eat enough of them (very true!) to make any sort of difference. I’m sort of in a bit of a rush to get her up and started though, which I never was with A as I don’t want to leave it too long and have her not wanting solids at all. Some kids with kidney issues have severe oral aversion and I’m hoping to avoid that with Zoe (without resorting to feeding her coffee!)

reblog- four unthinkable conversations plus my comments

It has been a little while since I logged on to my Reader, but this article was at the top of it.

http://www.desiringgod.org/articles/four-unthinkable-conversations

I think one thing that strikes me, and I might have mentioned it before (I didn’t get this from this particular blog post, but I’ve read it a good number of times, although I haven’t looked for the stats or anything) is that for a lot of other people Zoe’s initial diagnosis and prognosis at 20 weeks would have been enough for them to abort her. And I did briefly consider that too, although looking back I wonder if I was actually serious or if I just thought about it because I was told to go away and think about it. I think I already knew what my answer would be.

It’s scary because I absolutely love this little girl, her smile, her little face, her bright blue eyes that light up, the way she wriggles and kicks so busily with such a serious look on her face, the way she interacts with Annika…I could go on and on…and I can’t imagine not having that because I’d decided to abort her at 22 weeks instead.

Zoe was on a LOT of support when she was born. It is sort of mind boggling to think that at 35-36 weeks she was induced and given all the support she needed- what must amount to millions of dollars of it by now- and lived, but she could so easily have been induced 12-13 weeks beforehand, not given any support and died. Same condition, she didn’t develop or get rid of any medical condition between 22-23 and 35-36 weeks. And all it came down to was one telephone conversation where I said I wanted to continue.

I won’t say it’s easy having a child with a serious chronic health condition. It’s downright difficult.  But I can overlook all that just for the sheer joy that this beautiful little baby brings. There are bad days and good days, like anyone I guess. Overall though it’s worth it. It’s so worth it.

I think about Zoe’s testimony sometimes. She’s not quite five months and just think about what God has done for her. I can’t wait to see what plans God has in store for her. They’re going to be huge. They already are huge! Zoe has already been such a blessing to many, myself not in any way the least. God has massive plans for this little munchkin and I’m excited for what’s to come still!

From the article:

“If you believe in the sovereignty of God in all things, aborting children is outrageous. Period. The God who intimately knits babies together (Psalm 139:13), including some who will live with a disability (Exodus 4:11; John 9:3), does so for his glory and for the good of his people. All the promises of God remain true for that child and that family. God is mighty and full of mercy in the gift of every child, and he equips us to love them no matter what.”

Amen to that.

almost five months update

Zoe’s almost five months (she will be in three days time) so as I’m likely to not get around to updating that day, I’ll update now!

Zoe is such a happy little smiley baby! Her personality is really shining through. She’s such a little placid baby most of the time, much more so than Annika was at her age. The exception is if someone’s doing something she doesn’t like- then she turns into Little Miss Feisty! But as has been said to me, if she didn’t fight like that, she wouldn’t have made it this far.

Who says you can't be happy and smiley hooked up to a PD machine?

Who says you can’t be happy and smiley hooked up to a PD machine?

I feel a bit sorry for her sometimes being the younger sibling. Compared to the amount of time I had with Annika to focus solely on her, Zoe gets barely any. Sometimes I feel like the days are mainly spent doing ‘Annika activities’ that keeps her entertained and Zoe just comes along for the ride. I guess most parents are like that when the second baby comes along though.

My beautiful Miss A

My beautiful Miss A

All jump on for reading time!

All jump on for reading time!

I realize most parents think this about their children, but I think Zoe is just the most gorgeous little baby. Her dark hair is mostly falling out, apart from a few spots at the back, and is being replaced by fine light hair. There isn’t enough for me to be able to tell yet if it’s strawberry blonde or white blonde hair coming through. Her eyebrows are white blonde if that’s an indicator of any sort, but as her older sister likes to keep us guessing (black to brown to blonde now turning brown again) I’m not going to try to predict her final colour yet! She has such a beautiful smile and smiles at everyone. She absolutely loves people. I suppose that is one thing about having a baby who’s been a hospital inpatient most of their lives- they love everyone who smiles at them!

Girls in A's bed

Girls in A’s bed

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She’s putting on weight nicely and has just tipped the scales at 6kg, and has delicious little rolls of chub around her thighs now. I’m still breastfeeding during the day and expressing for her night feed, but the weight gain’s helped along enormously by a mix of extra protein, fat and calories that goes into her night feed (plus a bit extra throughout the day.)

I’ve seen this hashtag recently in relation to large amounts of photos of people’s babies- maybe I should start using it too? I do so love taking photos of her! #zoespam

We love you!

We love you!

end of feb update

I just realized it’s been almost a month since I updated. So much has happened!

We got to take Zoe home on Thursday, Feb 12, at 4 months and 12 days old! Most other babies get out at 3 days old, Zoe just had to be slightly different. Everything went well and with ten million stops, we made it home.

Just before heading home for the first time

Just before heading home for the first time

Put Zoe on her PD machine and we all went off to sleep. Round about 3am the machine started alarming. Apparently it thought there was some obstruction in the line- there was absolutely nothing. Calls to the company didn’t help either. In the end there was nothing to do but to turn it off as the machine was flatly refusing to go any further. We tried to get hold of the spare machine that had been supposed to be left at the hospital here, but it had never actually arrived there! It had gotten lost in transit and no one could figure out where it was (!!) The same thing happened on Friday and Saturday nights. By Sunday morning, after three nights of Zoe only having three quarters of her normal PD, I ended up taking her back to Adelaide. Her bloods looked good (she’d had pretty reasonable outputs in spite of it all) but she got admitted until they could send out another machine.

Sleeping on mummy....we ran out of onesies for Zoe so had to borrow a hospital one!

Sleeping on mummy….we ran out of onesies for Zoe so had to borrow a hospital one!

The new machine arrived Tuesday and we were all set to go home. Then on that morning’s bloods…Zoe’s sodium was low. We ended up staying until Wednesday- her dose got changed and her level had come up on Wednesday morning. We headed off home and guess what- I’d managed to leave her bottle of sodium chloride behind in Adelaide. Drama ensured. I ended up getting a bottle of 0.9% normal saline (a very much weaker solution than the concentrated one Zoe normally has) and instead of giving 0.89ml I had to give her 19mls. Huge amount for a tiny stomach. I had to give it over about half an hour to stop her spewing. Fortunately they managed to send it down by Friday. I now have enough to last the majority of the next year if her dose doesn’t change.

We’ve actually made it home 8 days now. I took Zoe back for her first weekly appointment yesterday and they were very happy with how she’s going. I kept expecting something to go wrong all week, but it hasn’t! Everything’s been working smoothly, thank God. I’m hoping that’s it for admissions for us for a while and we can have some time at home to adjust to our new ‘normal’ way of living!

home! or halfway there….

Guess who got discharged from hospital today for the first time in her life, just shy of 4 months old!  I was a bit nervous today prior to taking her home but it’s all gone so smoothly….PD and overnight feeds on no problem and both girls asleep by 6.45pm! Thank you Jesus! We’re at Ronald McDonald House for 1-2 more weeks, and then if everything’s running smoothly then we can head home. Exciting!!

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three point five month update

Time has just flown away from me! I just realized I haven’t posted since December. Granted, I haven’t been doing a LOT as Zoe’s still in hospital, I’m just not too sure where the time’s gone.

Zoe’s 3.5 months old now. We’ve reached that point where you start forgetting how old they are in weeks and start thinking in months, and when you realize what you’re doing, you realize you wouldn’t even know how many weeks they were anymore without checking a calendar.

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I love this age. I’d forgotten how much I love this age. Zoe’s right on track for development (she’s been checked by multiple physios and OT’s who all agree she’s a perfectly normal 3.5 month old in terms of development) and she’s smiling, making good eye contact, trying to get people’s attention, cooing and making little sounds, and has turned from a newborn into a beautiful little interactive baby. She even rolled over for the first time the other day, much to my surprise! She doesn’t seem too willing to do it again, but I have the evidence on video…..

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Zoe’s still an inpatient. We still get to take her out on day leave which helps pass the time somewhat- usually we don’t do anything more interesting than go to the playground or the zoo. She’s getting bigger, closing on 5 kilos in weight, although still tiny for a baby her age. She’s making her own line on the percentile chart, which is just fine for her.

At the beginning of last week we started trialing her on the automatic peritoneal dialysis machine she’s going to be going home on. She’s done really well and tonight is her first full night on it. Mike and I are both experts at using it. Hopefully tonight goes well and then we’ll be just that one little step closer to getting home. There are a few other things to sort out and stabilize first, including some high blood results, but we’re getting there.

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Been a hard last 3.5 months, and I don’t doubt that it’ll be a hard few years to follow, but feeling blessed beyond measure right now.

two months old

Our little Zoe is now two months old, and doing ridiculously well.

RIDICULOUSLY well.

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Compared to what I was expecting to happen six months ago…she’s a little living miracle.

Not even too sure where to start. Nine hours dialysis a night, and getting one night off a week. Feeding well. Apparently babies with kidney disease tend to have oral aversion- we haven’t seen any sign of that with Zoe. Smiling. All tubes out except for her PD catheter. Putting on good amounts of weight (she’s still less than 5th percentile, but she’s expected to be a petite princess)

We’re still in hospital. It’ll be a while before we get to go home yet, but that’s fine- I was expecting that. Zoe’s just passed the 4kg mark (which is funny to me in a way as Annika was 4kg by the age of two weeks!) so her weight’s creeping upward, slowly but surely.

Annika is handling all the adjustments well, all considered, in the way a pretty normal 2.5 year old would. She absolutely loves Zoe and is still showering her with kisses, cuddles, and pats that are a bit harder than I’d prefer them to be.

Mike’s been back at work full time for the last few weeks. Fortunately being a teacher he’s always on holidays! so he’ll be off for the summer holidays at the end of next week. Hopefully by the time he goes back to work we shouldn’t have too much longer left here.

I can’t get over how well it’s all going.

Thankful beyond words.

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Come, let us sing for joy to the Lord; let us shout aloud to the Rock of our salvation. Let us come before him with thanksgiving and extol him with music and song.