Days 314-319 Trisomy Awareness Month

I am a bit slow off the mark: but March is Trisomy Awareness Month, with the 18th having been Trisomy 18 Awareness Day....

I think awareness should be particularly pertinent in this country. When we first heard the word Trisomy 18, we were like "huh, Tri.. WHAT??". A relatively rare disorder- alot of the Trisomy 21 (Down's Syndrome) mothers, haven't even heard of Trisomy 18. But what about T13? Or T9? Or translocations? Or mosaics? There is alot about these disorders that I haven't even touched on- and really have just shared my experience of T18 through my daughter.

There are no support groups in this country, and I did not receive so much as a leaflet when I left the hospital with Mikayla. Obviously the doctors knew I was doing research, but information I have I have found out through the net, and through a wonderful network of mums and dads- most of whom have found ME. I am so grateful for these world wide web friends. Without them, I don't think I'd have come as far as I have. To all you wonderful mums and dads out there: THANK YOU! Your calls, FB messages, sms's, emails etc etc mean more than you will EVER know.

To all the beautiful little children who have struggled, and fought. Who have been courageous, and graceful; some who continue to do so today, and some who got their wings, and are now with Jesus: thank you for all you have taught me. Thank you for showing me the value of life.

To my beautiful daughter: there are no words to say how in awe I am at your bravery. I whisper all my thoughts and hopes and dreams into your precious little ears, so you know my heart: but I will just say this: I love you. So very much. Thank you for allowing me to be your mother. And for giving me time to love you. Everyday is a blessing. I admit, there it is often bittersweet- but what will never change, is how very much I love you. Always. And forever.

For anyone on Facebook, there is a great album that has been created by Alisha, mother to Lane (full T18) to create awareness. Check it out here :
https://www.facebook.com/album.php?aid=2106934&id=1324844228&fbid=1869236453703&ref=mf
(thank you Jill for the link)

As for an update on Miks: she is well. We have had a funny two nights, in that she keeps getting a really snotty nose.... and so she's been a bit frustrated... particularly if we resort to the "snot-a-la-tor"... but otherwise all is well.... we're on the countdown to a family holiday at Umngazi!! Can't WAIT!

Day 313 as she grows

I weighed Miks this morning.... she is 4.46kgs! That means she has put on close to 1/2 a kg!! Little fatty-boom-boom :)

I am LOVING seeing her gain some meat on her- particularly on her legs and bum. Nothing quite like the dimples and chubb on a babies bottom.... something she has never had....

Day 312 Chapter hopping

Been going through Miks' clothes, and putting aside all the clothes that she is now too big for; and I am feeling immensely sad about it. I should be celebrating that she is finally, at 10 months old, getting too big for her newborn (!!) clothing (although, she is still wearing 0-3 months sizes), but I feel quite nostalgic and sad about it.

Perhaps it's knowing that we have passed some of her life by... that I will never get those days back. The memories that these clothes bring- some sad, some happy. I know, I know, it's all a bit silly when she is still very much present in our lives... but, I dunno, it's closing a chapter I guess. Am I really ready to let go? Are you ever ready to let go? Maybe it's also just because another little T18 angel got her wings... little Emalee...8 months old. I read through the stories of these mums who have had to say goodbye, and it hurts so very much..... I'm just saying goodbye to clothes... how will I cope if I have to say goodbye to Mikayla!? *sigh*

I phoned the pediatrician about the "episodes" shes been having. She says it's difficult to ascertain what is causing them without actually seeing one of these episodes; and she has suggested we keep an eye on it, and if she has one again, and I am able to, to try video it, so that she can actually see it. Obviously our main concern is that it is a brain seizure, as having these can cause irreparable damage to the brain, which clearly we don't want.

Had a bit of a mare last night with Miks: cos we fed her around 8pm in her tube, but because we'd kept her bedroom light off, and just relied on the passage light for light, I think I didn't notice some pretty big air bubbles going in with the formula. So she proceeded to throw up half the bottle all over herself.... but obviously it was just formula sitting on top of the air- so it was just straight milk. I always get such a fright though! Such a wimp, I know! Thankfully she was on the leather couch at the time... Ah, the joys of leather.... sorry all you animal activists out there :( but there is nothing quite like leather... material is lovely, but try getting baby vomit out of that... not for the fainthearted! But good old leather just requires a good old wipe.

Days 308 - 311 Seizures?

Sleeping Beauty

I often wonder if people perhaps think that we have "overplayed" everything with Mikayla. After being given SUCH a poor prognosis, and expecting the worst, we had a dedication service really early, we didn't really plan too much in the future etc etc. Obviously, as time has gone on, and one week turned into one month, and one month turned into ten months, and suddenly our "crisis" isn't so much of a crisis. Don't get me wrong, I am not complaining that sympathy is waning, nor do I actually want to live my life in "crisis mode".... I just think that perhaps, because people don't see all we see, and because this has become our new normal and we're actually okay, perhaps our crisis doesn't seem like it was so much of a crisis to begin with?

And I guess I say this because sometimes I talk about the bad moments, the hard times, like when Mikayla cries for 5 solid hours, but people come over and all they see is a quiet sleeping baby, they must think "ja, right, hardly difficult".... so, as odd as it sounds, I am sometimes really grateful when other people see some of the not so nice things that Miks goes through.... kind of my proof that I don't just make these things up as some kind of sad sympathy-seeker!

Like on Friday afternoon/evening:

You see, the last week or so, Mikayla has been waking up in the night with a scream (well, scream for her, anyway), and has had a horrible complexion, been quite inconsolable, and for no apparent reason. I haven't been sure what it was, having obviously caught it "after the fact". Is it a seizure? Is it something to do with her heart? Is it an apnea? Is is a blocked nose? But on Friday, it happened while she was awake, and while our dear friend who was with us was actually holding Mikayla. Basically, Miks' face went purple/red, as if she was straining, but her whole body went stiff, and kind of limp at the same time.... And she started to cry... more of a whimper, actually. And was inconsolable. It was quite scary though, because unlike the others, this went on for a few minutes, with her going stiff then limp.

The worst part is not knowing what to do. She looks like she is in pain, and quite frightened. Her eyes don't roll back or anything though, so I am not 100% sure if it's a seizure or not. I guess I need to phone the pediatrician on Monday, and perhaps she can clarify. The other thing that's been strange is that she's very very sweaty lately. Given, it has been really hot, but the reason the sweating is strange, is because her body is often quite cool, but her head very sweaty! Maybe a fever? But she isn't presenting with a temperature or anything? Weird!

Other than that, Miks has actually been quite sweet over the weekend. Quite smiley and chatty. She loves being around people (particularly Russ and I), and being held and cuddled. Her eating has been ok... still haven't addressed her nights... but there's just too much going on at the moment.

As for me: this heat is killing me... I am desperate for winter to arrive. I am carrying so much extra weight, I reckon my core body temperature is probably 4-5 degrees higher than anyone else... and when temps are over 30C, that's a LOT!

Funny, we're always quick (me included) to say how UNFAIR life is when things go "wrong", but, as I read last night: "the only FAIR in this life is a carnival".... think about it :)

(I'll add that if you think about it logically: why, just because you're a good person, or do the right thing, or listen to God's commands, do you think that you're exempt from hardships or trials.... would it be fair if only "bad" people had bad things happen to them? None of us are exempt.... and sometimes some people are just "unluckier" than others.... fairness has nothing to do with it)... Anyhoo....

This video was taken last Wednesday... just love the way she anticipates me coming to kiss her... so sweet:

Days 300 - 307 Who's counting?

"Mickey Blue Eyes"

I seriously don't know where the time goes. How has a week flown by so quickly? More importantly, how has 307 days gone by so quickly? Miks, you're nearly a year old. 10 months, 1 day to be exact. How is that possible? Despite us, despite the doctor's poor prognosis, despite all the trauma of the early days wondering if you'd even make it to one month.. or even if you'd make it to morning... here we are 10 months down the line! And it really has flown by!

I think we've settled into a place of acceptance. Certainly, I think I have. Intellectually I know and understand that you are what you are. Your "condition" is what it is. And no amount of tears is going to reverse this reality. I'm not saying it doesn't still hurt. It does. A lot. I would still change this, if I had the capacity to do so. But when you realise that your life isn't always controllable, and sometimes our lives are simply a product of our experiences. A culmination of internal and external influences... making up who we are, and who we become, one moment at a time.

Of course, I also believe in an overall plan... governed by a good and gracious God who does love us, even when our experiences don't seem to mirror that love. And that has always been the most difficult pill to swallow, for me, was trying to understand why this hurt was being allowed in our lives by God. But, as I say, I think I am slowly learning to accept things for what they are. To embrace today, today, because I cannot change yesterday, and I cannot predict tomorrow. Looking forwards and backwards at the same time, is quite simply going to give me whiplash, and I can't be dealing with that :)

I haven't weighed you recently, but you certainly are looking healthier, and happier. You've been eating cereal once a day for the last week (only 2-3 teaspoons, but you're tolerating it- even enjoying it- and that's all that matters). We started you on fruit today. You had 3 teaspoons, and also enjoyed it... bananas :)... Height of laziness on my part, because it's just the bottled stuff... but it was available... you were willing.... so why not?!

We still haven't sorted out your nights. I confess to being somewhat lazy about it.... it requires us giving you a top up between 8&10pm, which we're not doing.... so it's self inflicted... so technically I shouldn't complain... but last night Daddy fed you at around 10pm, and then you woke at 2:30am, and again at 3:30 and again at 4:30am (all me)... and every time you'd only eat some of your bottle, and then spit it out... and THEN... YOU CHEEKY LITTLE SOD, you get all cute and gurgly!!!?? Well, sorry, but even though it's super duper cute... you have GOT TO stop... seriously, cute and gurgly isn't THAT cute and gurgly at 4am! Especially not when it's 3 times in three hours. You little RAT!

And cute you are at the moment. I wish I could capture more of your cuteness... sometimes the videos do you little justice... but you're "talking" every now and again, and you're really smiley. You particularly love smiling at Daddy...although if he's holding you, and I say anything, you do look for me (it's nice to feel loved).

We've moved all you kids around, and you're now in the big room, awaiting a cot for your little brother or sister to join you. I hope it's the right decision... we think so. The boys are DELIGHTED with the move, because I've moved them back into their "old" rooms... and they're chuffed to no end about that. It's true what they say: a change is as good as a holiday!

The only not good thing that's happened is that three nights this week you have woken up SCREAMING. When I get to you, it's like you've had a blocked nose, and haven't been able to breath. Your skin is a horrible complexion, and you're really fretful... quite inconsolable, actually. But the strange thing is that I can hear that you are able to breath, and yet you continue to cry despite this. Like you're in pain? I'm not sure. It's quite scary. On Sunday night, it was so bad, you were actually retching! Don't know why or what? at first I thought it was just a blocked nose, but normally when that happens, when I get to you, the force of "trying to breath" has actually forced all the snot (and some vomit) out your nose... making it quite obvious. So now I am thinking perhaps an Apnea? Perhaps something hurting? Argh! I don't know... that's the problem. Anyway, it hasn't happened since Sunday... so hopefully it won't happen again?

Anyway, this little video is quite sweet: I love the little double jointed finger in your mouth... "the thinking pose".... really sweet. And that yawn! Man, it's cute :)



Your Dad and I... we just love you so much. So wish I could have seen him walk you down the aisle one day.... I've always pictured that moment.... and it's those things that make me sad. We celebrate small milestones of their own enormity... *sigh*.... but still :(

Days 287 - 299 Getting into the Swing of Things

Mickey with her cheeky dopey grin... I love it :)

I have been meaning to blog for ages.... I spend many a night in my bed trying to fall asleep with a hundred things I want to say in my blog... but actually never get to writing it.... at least I am still having these thoughts out in my head... otherwise I think you'd have to send me to the silly-bin!

What have the last couple weeks been like in this house? Well, unpredictable... but I suppose there's a certain amount of predictability in the fact that our days are unpredictable. How illogical is that? Well, in this house... pretty logical, actually.

Miks was quite badly constipated about a week ago... nay... REALLY badly constipated. But I think I have come to a sort of solution... she needs to drink LOTS of water. Of course, the dietitian pointed out the need for her to have more water.... but with me now keeping a diary of exactly what she's eating and drinking and how it effects her... er... bodily functioning.... well, it's so easy to see now that when she only drinks a little bit of water, it invariably leads to her being more constipated! Mind you, when it comes to Miks, its never quite so black and white, but at least I know to make her water consumption a priority.

We've started her on solids yesterday again. She had the wierdest thing... she vomitted up a whole lot of the formula and cereal she was eating... but her vomit was white, flecked with... violet. Yes. Violet. As in purple! Anyway, I chatted to the dietitian, and she thought perhaps it was just some dye from the op that has been stuck in her stomach lining, that decided to come out. But I tell you, when you've put nothing purple in, and purple comes out... it's... well... disturbing :) Kinda like when I go on a boat at sea, and I end up hanging over the side of the boat, gazing on the carrots that I hadn't eaten!?! Ok. That's gross. Enough of that!

So Miks sleeping has been up and down too. When she's constipated, she's obviously a nightmare, but when she isn't, she's not too bad, only waking up once. Her appetite has been phenomenal. She is eating so well at the moment- with us seldom having to use the PEG. The dietitian thinks perhaps she had silent reflux, and that the op has perhaps sorted this out... we're THINKING she might have has a Nissan Fund done at the same time, hence the improvement on the reflux. I will ask the surgeon when I take her for her check up.

In terms of the PEG: As I said, we aren't using the PEG too much- although, when she's been difficult with her eating, we've had the option to give her the PEG, meaning that we know at least she's always getting her food in. It really has changed our lives. It did start getting a bit inflamed and infected... a by-product of her constipation, can you believe it!? But we seem to have nipped it in the bag.

And Mikayla? Well, with all the eating, she is more alert, more active, more interactive.. and has put on around 280g (we weighed her today!).... she's still very much T18, and still has all the challenges, but she is definately happier.....more smiley, and really cute! Other than at 3 in the morning, I am really enjoying her at the moment.... (at 3am she has decided that the thing to do now is just cry til she has company. Not cos she's hungry, or thirsty, or anything.... but just cos she quite fancies having someone with her.... not impressive!)

Here's a cute little clip of her from the other night....



As for me... well, I have around 10 weeks til this little baby comes. I feel completely enormous, and am really looking forward to not being pregnant anymore.... but am quite nervous about how we will cope with two tiny babies. Mainly at night.... this lack of sleep is quite tough! The one thing is that I am really looking forward to seeing the boys with this little baby. They're going to love having a baby who interacts more with them.... it'll also be interesting to see what Mikayla thinks of having company!

We're also not sure how to arrange the kids. We have 3 bedrooms, for 4 kids. Do the babies share, or do the boys share? It's a strangely difficult decision. We've never been the kind of parents who have the baby sleeping in our room with us, so that's not an option.... I think, at this stage, I am just living in denial for as long as I can. Maybe I'll just leave it until I am in hospital, and make it Russ' problem :)? No, just kidding!

Keep wondering what God has in store for us. It still sometimes strikes me as strange that the person who likes to plan and "be in the know" (me), is living a life that is now so out of my "control"... we really have to live one day at a time, because we just never know what tomorrow will bring. Strangely, that's true for EVERYONE... we just KNOW it to be true more than perhaps some. It's humbling, to say the least (and at times completely frustrating!).

So what do you think? Pink or Blue? Tee hee... I'm not telling.... :) Baba is well... mid February, bubs was around 900g (apparently big)... mind you, given my size, I certainly hope it's a big baby! I feel like a huge hippopotamus! I think I look like one too. *sigh*