Friday, 31 December 2010

Almost a new year

I always feel I never ponder the coming year enough.It is going to be a big year for us, in so many ways,personal,work,Katelyn...
I pray I find some time in the next few days to be quiet,still and find my place for the coming year.
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Friday, 24 December 2010

Christmas Eve

With lots of incredible family(and 6kids!)-just wonder and pray we'll fit in fine in 5 years time.

To our first christmas as parents...xx
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Wednesday, 22 December 2010

The battle of burdens

I have this frustrating habit of taking on other peoples burdens-how I think I can help,or at least try non-stop to help,but I do know ultimately that I can't and that it's their own life journey and self-discovery that needs to come to the point of change,its nothing but love from me that'll make a difference.

Its a frustrating process!
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Friday, 17 December 2010


Sometimes I feel like I'm still at step one of processing the past 12 months. Experiencing such a sadness lately of all the things I never had, or won't ever have - how those things are gone and won't come back. I just can't quite shake the sadness of it. That those carefree days (tiring,hard and all those things I know) of feeding,sleeping,settling etc etc just never stopped on our doorstep,that there was always a cloud hanging over our heads (weight-gain,how much I expressed,how long she fed,did she take any boob?,feeds taking 1.5hrs etc etc).
Its a hard journey when you have so much more to deal with and then you faced with these emotions that creep up.
So, in the midst of all the heartache,all I can do, is trust God.
1 Cor 1:8/9 - He will keep you strong to the end, will keep you blameless till the last day. God is faithful.

Friday, 10 December 2010

Just have to

Sometimes when I feel I could burst with exhaustion (mostly emotional..but physical,mental too...all of it!), frustration, fed-up'ness...its almost a feeling of nothingness than an over-emotional feelings. (But don't get me wrong,there's enough emotion to make me cry!). But that's what its become like-nothingness. When I think about I figure I'm tired, frustrated etc.
I just HAVE to remember to trust God. It doesn't change me instantly, but often slowly and surely I feel a calmness. Doesn't explain or give me answers, but it makes me feel like everything's alright. But that's when I remember to stop,take a break and trust God. The rest of the time is like huge void of empty nothingness.
God, remind me to look to you.

Thursday, 9 December 2010


Been celebrating our special girl today....pneumonia and all!! Sushi and red wine while she slept next to us.

She is so sweet.
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Today a year ago I stumbled into the scan with a million thoughts on my mind - only for all of those to be shattered into pieces. They were of work,holidays,christmas,baby,renovations... and here I am, exactly a year later, with all my thoughts a few days ago suddenly put on hold-lying in hospital waiting for Katelyn to get better from her chest infection.

What a year.

So many incredibly hard times,times that no-one understands. Even Simon and I experience different thoughts, so we only understand each other to a certain extent too (of course very similar). Its always those quiet hidden expectations that are the hardest ones to deal with - so many of those I'm still trying to deal with. And unfortunately, because this infection came at such a bad time (yes of course l expected my week to play out as I wanted it to) ... It really brings me back to such a hard place.

All I know is God is faithful. Whatever that means now to us,where-ever we at, I never doubt that...I just need to continually remind myself of it.

So I think today must be about the positives, its easy to get caught in the negatives so I must try pull myself up,or ask God to.

- I do have a beautiful little girl whom I love so much.
- I do have an incredible husband whom I miss every second we're apart, who supports me, loves me, encourages me, is strong when I'm weak, is a wonderful father, my best friend and simply the nicest guy on the planet.
- I have learnt and am still discovering about Gods way, Gods plans
- I'm going to have a different journey, and I want to learn to embrace that
- Even when its hard with 'perfect' situations around us, I want to learn to never look at it from a perspective of 'what I never had'
- there's definitely more,but for now these are my thoughts,I'm sure today will see another post

Monday, 6 December 2010

Bath Time Mirror Time

I just have to put these up, she just knows her mirror time comes before bath time and she LOVES it!

Sunday, 5 December 2010

THE week...9 December

I'm not sure whether it is,or whether its not. But thursday will officially be a year since our lives changed,or should I say,what we thought for our lives,took a major change. So I'm trying to work out whether its a big day, or whether I'm being too *i don't have the word for it*.

But it really has been a hard year,in so many ways,now I'm just kinda numb and so used to the challenges that it almost feels normal (which obviously is the idea and probably a good thing). When I see other people go through the phases we've gone through,or just ahead,I realise how different this journey has been for us.

I'll never have that first child, holding her, breastfeeding her, special bonding time in hospital - and I do wonder if next time round, how hard its going to be with old memories,but trusting God on that one that I'll be free of that and able to be there fully. But I can't think of all those things that I won't have or didn't have, because there are lots, but I also had my own set of experiences and I guess that's what I need to remember. But that's whole separate thought on its own.

Simon is literally so ready for holiday I've never seen him like this. Its killing him that we're not yet ready to go. When we chatted about it, I was asking him howcome he is so desperate for holiday. He just said he really needs to get out of Cape Town, then I realise how its all just been too much and we probably just want to escape it all.

So here's to a final week of closing up this year, so we can come back and think of the year to come and not dwell on the past. It'll have its own set of challenges,but I'm so ready to attempt to move on.

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Friday, 19 November 2010 I have to post...

Katelyn just LOVES her time in front of the mirror before bathtime. It started because we just pop her on the floor while we running the bath...then she realised she's in front of a mirror, what fun (hmm...taking after her father and her uncle !)

pure excitement (if only i could post her sound effects)

smiling at myself

i'm so chuffed with myself....

looking at mommy

Meeting the moms, racing towards 8months, sleep training...hmmm...

Things are going I'm sitting down hoping that this time will help me get my mind all together again!

Had a 'meet some more moms' time yesterday at Chere Botha. There were two other moms with twins and down syndrome baba's, and another mom who's son has another rare syndrome. Amazing how such different people all walk on the same journey - yet our journeys are all so different. One mom: IVF babies, twins, one downs, had a suspicion but didnt do any amnio etc because didnt want to and the risk was so high of something going wrong. Miracle that her babies stayed in until 34 weeks...waters 'grew', vsd closed itself in the womb - awesome testimony. Her 'big' one, 10 months, 11kg's...SOOOOOOO much bigger than Katelyn its actually hilarious. They have two other friends with Down Syndrome kids. Then little Coco, also a twin, has an older brother who's 5. She really is a sweet little thing, and her sister is soooo intense in comparison. Born both under 2kg's, but doing well. They are 4 months now, and they only found out at 3months, after the moms friends child was also diagnosed late and she recognised the signs (they did know that the one little one was a bit different in the womb as she had stopped growing at a stage). Just amazing how different yet the same their journeys have been. Makes me feel a little more isolated, how we are so much more in a 'normal' world than these others...and even with so few little baba's around us, it makes it really hard.

We're having to do sleep training. Been working out in my mind what our approach is going to be, but because I'm not exactly sure how to tackle it from a weight/age appropriate/day time side, I think we're going to have to use someone. Katelyn's started waking up quite a bit at night, and her morning wakeups are getting earlier and earlier...NOT what we were hoping for. So, yip, its time. To get it right, to get a proper routine in place before we head away to Knysna where it'll probably go completely chaotic all over again. Especially sleeping in the room with us, now thats going to be an adjustment! Anyway...i'll update this as we go along the journey. I've already made her room pitch black, which has improved her crying spells in the day...right now, for this first morning sleep she only cried for 10minutes. Lets hope that improves...sleep associations...i gotta work on that!

We are racing towards 8months old. I honestly cannot believe it. From 6 to 8 months time has gone quickly. Before that, it seemed sooooo slow. I guess now i know how other moms experience it, where all of a sudden its 4 months gone and you're heading back to work (or 6 or 8 for those lucky moms). Me on the other hand, I'm not sure. I can totally imagine doing a bit of work. I am helping Simon out quite a lot actually, especially just being a sounding board all day, but it needs to become more formal so that there's some tangible fruit from my assistance! I really want to be as unattached as possible until Katelyns next heart surgery is over, just a few more months to go. Then we'll see what happens.

December rush is upon us, we trying to be as good as possible in not over-committing because its so exhausting having later nights, longer days, rushing round during the day....and its so unsettling for Katelyn. So not great for her at all. Gotta try get her relatively settled before we upheave her to knysna! Hopefully this time next year it wouldnt even be a consideration that she'll happily cruise off to Knysna and sleep well! The joys of baby days...

Sunday, 7 November 2010

Seven...almost eight months

Almost eight months...can't believe it. She's such a sweetie...hard work, but such a sweetie. Having a guilty week of how little I do with I should be doing so much with her, as it can only help her, but find it so hard to find the time, or when I do have abit of time, to actually take it by sitting down with her and playing with her  - and not dumping her next to me on the floor while I get on with something or try connect with some people.

Katelyn...I'm trying to use her name more, as she needs to learn to respond to it. It is going to take a while to get to that, so we're trying to be consistent in only calling her by her name and no other baby nicknames (for any parent, i bet you can agree on how hard that must be!!).

We had a good physio session this week, she's very happy again with her strength. We're working on a bunch of things..but one thing i found interesting is the learning and starting to put pressure on her arms / hands. So did all sorts of interesting things in how to do that and integrate that into playtime (note to self: more things to do with her when I actually commit to some time with her!).

Busy time of year ahead of us, trying to keep our diaries relatively 'free'...which means just not trying to squeeze in too many things in one day...its hard! the downhill road till christmas break...Simons ready to go away now...but just a few more weeks of hard work...then a good break :)

Sometimes its hard to focus on the sun...

Some days, eventhough the sun is there, its so hard not to also see the clouds. I try my hardest, say so many prayers, but sometimes its just hard. Hard.

I trust Gods journey though, in amongst all the good and bad days, all the strange small emotions, I know that He has a plan far beyond and far above anything we can imagine. So i choose to trust Him. It doesn't take those hard days away, but gives me peace to hold onto in those days.

I'm finding the small things hard. Noticing small little things around me and how different it is, hard it is, how she isnt like that, how it won't be like that for us...all sorts of things. Those things are going to face us, and are going to come up, I adore Katelyn so much that of course I wouldn't change who she is for the world...but sometimes I feel that I'm not going to have the strength to deal with those things when they come, or now. Then I remind myself that I'm not on the journey alone. Even when I feel alone.

Thursday, 28 October 2010

The sun shining through the black clouds

Today is like that...a whole, huge, hot bright sun shining through a fairly thick set of black clouds. The clouds have been there for a while, though they are high up and seem fairly far away, they are there. Then there's the sun, some days its not out, but its rays are out shining through...but today, the sun is out.

Met cardio comic this morning for a checkup. He was just delighted with Katelyn. She's been off her medication for at least 5 / 6 weeks now [partly because I eventually got so slap that i wasn't giving it to her - it was killing me!] so he wanted to see how she was holding up without the meds. From the moment he saw her he was impressed - with her colour, her strength, her chatting, her breathing (which i had been worried about). He then examined her, her livers good, the heart murmur feels good and all the other goodies he checked. He said that although she's small - which she is because of the Down Syndrome and heart, but that more importantly her weight / height proportion is perfect.

So, he wants to see us just before she's 1, when he will schedule the operation. Its likely it'll be early April 2011...just after her first birthday. We have a fairly eventful March, so we'll go to him before all that and schedule it for whenever he feels comfortable. He said he estimates she'll be about 7 - 7.5 kg's at the time of surgery and probably only 2 or 2.5 by the time she's 10kg's (thank goodness we didnt have to wait for that!).

Each day I'm reminded how God has the plan all worked out. Just yesterday I was drizzling as i was reading OUR SONSHINE blog, her story of her second pregnancy and birth after her first child also with genetic disorder. I've been thinking alot of it lately, re-living all the same moments we had wtih Katelyn, how it will be, how hard some of it will be, and whether I'll ever get to experience a normal, happy pregnancy ever again. Most likely not, but I'm trusting that each of my pregnancies will be unique, different and teach me something. But I do of course grieve for the fact that I'll never have that, an 'uncomplicated' pregnancy - when I see all those around me experiencing it.
Today, I look at my daughter, I see the sun, and I realise I wouldnt change anything for the world. Its hard when those clouds appear, but more and more each day I'm learning to spot the rays of the sun, or the whole sun. Truly blessed.

Sunday, 10 October 2010


Feeling very full. So many special friends, special family and a very very special little girl. God is good,to get us to today...such grace! He has her in his hands and has plans for her future-how refreshing that its not all about us.
Will post some pics soon of her dedication day!

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Sunday, 3 October 2010

Some pics of what we've been up to...

Katelyn getting really quite stronng, very exciting

Spending time checking out granny's peacock
Very exciting - holding my rattle!!!

Chair physio recommended...and i sit so beautifully in it! yay!

She cracked 5kg's!

Wow - what a special moment. Seeing that 5.27kg's on the scale was literally like seeing the most beautiful sight you could imagine! The previous weight check she had gained 50g in two weeks, this was a 400 odd gain in two weeks! How good God is.

We've started to get out and about...probably to our and her detriment a bit though, because we always end up skipping something, or not feeding her as much, or sleep goes crazy or something - but its been wonderful starting to go on outings as a family. I think one thing that I've felt I've missed is those special few outings in the early-days of parenthood. Ours was blurred by so many things, that its literally taken us 6months to get to the point where going out is a little easier. She's a complete star when we go out generally - but then we get home and its most often chaos. Anyway, its progress.

She's started sleeping through - not that i know what that actually means, but she's going down around 7:30pm and sleeping until 6ish. Two nights down and she's woken up at 6 and 5:15 - still not sure whether i'd prefer to be getting up at 4am and sleeping until 7, or getting up at 5:15! Its really exhausting starting that really don't know what to do with her at that time!

We're having a small dedication for her this coming week, its been quite an internal process working towards it and what we want to dedicate for ourselves and her. So many thoughts. Simon and I had such a special evening talking about it all.

Other than that, she really is a complete joy. So many people just think she's adorable, so do I!

I'm really really exhausted - time to get ready for bed! 8pm!

Tuesday, 28 September 2010

Some new pics...5 and 6 months

Some new pics of Katelyn - showing off how strong she's getting...

**though strong is about all she's getting, as she's hardly getting any bigger...still stuck around 4.8kg's. Havent put on 1kg since the op - 2.5 months**

Sunday, 5 September 2010


I'm feeling so grateful for god director of all in my life. That even when times are tough,or not easing up,its not about the circumstance but about what I have and what Gods got in store still to come.

Reminded today that we need a community to live our life together with,but most importantly that we need god more than we realise. No matter what we going through,those are the most important things.

So grateful its not all about me!
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Thursday, 2 September 2010


Abraham Lincoln observed, 'Commitment is what transforms a promise into reality. It's the words that speak boldly of your intentions, and the actions which speak louder than the words. It's making time when there is none... it's coming through time after time, year after year. Commitment is the stuff character's made of... the power to change the face of things... the daily triumph of integrity over scepticism.'

I need more...
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Sunday, 22 August 2010


Katelyn is so sweet!! My little sweetheart is so cute, eventhough we have very little time to just be together - she really does make 3am feel like 3pm.

In between her screaming,choking,medicine moments,feeding and non-sleeping - I just love to hold her close & wish I could squeeze her tight!
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Friday, 20 August 2010

Sometimes I wonder

Sometimes I really do wonder if things will ever get easier - or if the past 5months (ok,8 months) is just preparing us for the years ahead. When one small thing comes right,the next thing goes wrong. We're still in a manic feeding/sleeping routine which just isn't quite coming right,and suddenly she's just snapped into this thing of taking 3hrs to go to sleep at night. But I think some of those things are minor (eventhough the putting to sleep is backbreaking) - compared to the emotional journey I feel I'm on, that's the real exhausting thing. Sometimes it feels like we're completely alone in what we go through,the thoughts,the challenges.

When I remember, and sometimes its hard when there's always something happening - God is the only one who really knows where I'm at,the only one who can really comfort and bring peace. May I remember that daily.

Thursday, 29 July 2010


Its amazing how rewarding smiles are. Especially when you are4 months along and there haven't been that many along the way. That's about the only good thing that's come out of this op - is that she's just been smiling a lot ever since! Its adorable. It happens anytime - even just before/after/during a cry!
God is good for giving us something rewarding during this recovery stage...
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Friday, 16 July 2010

Day 8 - discharge: life in the ward

The things I can't believe:
- She gets woken up ALL the time for meds and things. Nothing like at least attempting to do it around feeding times. Just as she's falling asleep,its time to wake her for something else

- I am in a private room (because cardiac patients are at too much risk being in the general ward-thank heavens) and I cannot imagine not being. Its bad enough in here-the noises unbelievable,and that's without the construction that's going on around us (literally drilling and hammering all day...)-something about the aircon in the building. The ward is like being in a dormitory,people milling around everywhere,kids screaming,nurses being I literally hardly ever leave the room! Feel like a prisoner!

- She's been so set back by the op. I'm hoping some of it is 'just for now' and she'll just one day be different,but I think I'm dreaming. She has zero neck strength-back to newborn where full support always needed. Her limbs have less strength than when she was born-particularly the left side where the cut is. Her arm has very little strength and she doesn't really move it. When I change her nappy I realise how little strength she has. It will be interesting to see how quickly her physical strength comes back.

Then there's my worst nightmare-me getting sick. I pray that she doesn't get sick,it would be lethal to her now. Need sleep to get better...and in this place that's a problem.
**i'm sick now,@home,mom2the rescue. She's even spending the night there tonight**
She hasn't picked up any weight,so celebrity surgeon bit nervous to send her home. But cardio comic says that its not an issue and she can go home. Who knows!!!

Day 11 + Day 12
She is finally discharged. Granny stayed at hospital for over a day,and she was discharged to go home with granny-as yes,I'm still not better. My dry cough has now turned into a productive cough which isn't good. Anyway,we getting her back this afternoon (day 12-hope I'm ok by then),and getting a night nurse in tonight. Can't risk me not getting better and simon is on the verge too,so nurse to make sure we don't have to get up 4times and that's without her crying.
She's been discharged with 10medicines,and is generally very sleepy and when she is awake is generally miserable. She is still pretty sore (not sure if I have noted how big her cut is!!!)- but we have to start weaning some pain medication,so not sure how we going to start that.
So yes,out of hospital and now the long road of recovery continues at home. Its going to take a long time to get her strong again - but she's home... :)

Monday, 12 July 2010

ICU Day 3 - Day 7

ICU is where I live at the moment. It is amazing how some days there are such big improvements,and others its just so slow. The big improvements are when the physical machines,pipes etc become less-in one day her ventilator came off (wednesday,day 3),the next day she was off her oxygen by 9am. But now,we're struggling with her chest,has a collapsed lung and chest infection. Its amazing how slowly she improves with all the attention she's getting(physio twice a day, anti-biotics, suctioning). She sounds awful,as though she's been a heavy heavy smoker for 40years.
Its been very tough watching her so upset,sore and everything else and not be able to hold or comfort her. Just stand there and try your hardest not to get upset! But she seems so helpless just lying there in this huge bed hoping she'll recover.
But,the pictures tell story way better,so here a few to see the improvement...

First hour after the op, Nanette looking after me for day 1 and day2. My bed and machines keeping me going...

Hour 2: very drugged, eyes closed with ointment, bit swollen
tummy time is good for keeping fluid moving around lungs
Day 3: Ventilator off, oxygen on...still very out of it but start to open my eyes more. All very swollen

Day 6: Very grumpy still, granny trying to cheer me up
Day 7: Still not so hot, but all dressed and ready to leave ICU

Tuesday, 6 July 2010

ICU Day 2

Were hoping she'd come off the ventilator today, but she didnt. So she's still very very drugged and sleepy. I enjoyed the few awake moments, was nerve-racking but great to see her little eyes open and to see her move her mouth and body a bit.

Her body is very swollen, particuarly her legs - from the fluids apparently. Her legs because she's elevated so I'm sure its all running down there. She looks like a 6month old if you look at her legs only! The physio came around today to help work on her lungs, and she had a little wipe down and we put some new bedding around her.

Its so hard - because there's nothing you can do, but you do want to be there. I eventually at about 4pm, found my comfortable little spot in the corner next to her bed and read for a few hours, just keeping an eye out for her and trying to be out of the way for the nurses. The ward has really filled up, so there's no spreading out and its very tight in there!

Day 3...who knows, maybe some of her own breathing. [@ the moment she's only breathing herself when she's awake, so we don't want her to get too lazy!] - and they're only giving her 15ml' every 3 hours! thats a little different to the 100 she was getting! My challenge is to keep up the expressing...Milk Bank here we come!!!

Truly amazed at how calm I've been, I just know that so many people are praying for us and I know that this peace is only peace that God can give. I am so grateful for not being a breaking down mother in ICU - for being able to enjoy her even in this state, to see the beauty below all those pipes, tabs etc - and to know that she's our special gift.

ICU Day 1

What a sight. Words cannot describe.

I can't even imagine having seen her like that without having seen pictures of other babies post op. So thankful for the suggestion by another mother,because without it the ventilator and pipes would definitely have been too much for me.

Its quite something being the childs parent and almost feeling like you're getting in the way and that there's nothing you can do. Those first few hours post op are quite overwhelming. The nurse literally every minute was either adjusting pressures,recording happenings but most of the time is responding to her readings by giving her 0.3 of this,0.1 of that-so she is continually been watched and responded to. A job with a huge responsibility. Quite scary to sit there and hear her talk about this dropping,the urine etc etc. Special K had weed a lot and they were concerned about colour etc!!! My special girl has always loved to wee!

She looked like a plastic doll. Seeing the nurse just move this completely out of it, floppy baby looks quite shocking. Her eyes are half closed with a vaseline type something rubbed all over them to prevent them from drying out. She has loads of tubes on either side of the groin,her hands are going to be wrapped up now and probably tied down,and then the ventilator skull cap(I like to call it) and her other monitors on chest,hand and the drainage etc from cut. War wounds I tell you - she' going to have lots of those.

Watching her lie there,with a machine making her chest rise and fall can only remind me of how fragile life is. How important it is to look after ourselves physically,but most importantly to live one day at a time, embrace God in each day and be grateful for each small thing. One day of a grumpy mood (happens to me often!!)is almost not worth it,as we don't know what tomorrow brings...

Monday, 5 July 2010

Pulmonary Artery Banding operation

Our hospital room makes u feel like you in an airport-this because we spend your life hanging around waiting...and sounds like an alleyway behind an asian takeaway joint-that sound and buzz of an aircon machine which gives off a very average feeling.

Strange that this sweet little girl knows nothing about what lies ahead for her-or maybe all the needles and tests yesterday started to give her the idea.

Was awful to be in the room next to where she was getting all her tests done. Then it came to taking some blood-as they need to prepare for possible need to do blood transfusion. I've never heard her scream like that-no injections,synergis or anything has ever made her cry like that. It didn't stop for about 40min.eventually the nurses come and say 'unfortunately we were not able to get blood'. So all that torture for nothing-i'm sure that after the first 5min they could have figured that out! Then they brought in another nurse (who apparently never struggles with these things!),to hear her being put through hell again-for her to also end up saying,"sorry". Then shift change,and the new nurses decide to get the person from the lab to try-luckily they only tried for about 10min! So so awful. Later,when changing her,I found about 3needle marks in each of her arms and two on her hand!!!the poor thing,no wonder she was so sore!!

Had the visits with the doctors (including celebrity doc-who by the way is very nice!),continual temp and sats tests,so all quite busy.

Had a look in ICU-only two little ones down there with the one being transferred out,so hopefully will be quiet there this week. Little K will be an incubator cos she's so small.

The thought of what lies ahead today is nerve-racking...but let me see how it pans out before I comment.

Wednesday, 23 June 2010

Scheduled and slowly approaching

Its Scheduled - 5 July. This will now be the pulmonary artery banding operation,which pushed out the open heart surgery until a much later date. This will give Katelyn the time she clearly needs to get much bigger.

So now that we've gone through this strange process of nearly operating, then medicating,and now back to operating - I feel like we're back at square one and now the wait just seems to be sooooo slow. Clearly God gave us this time to get ready for the operation,now doc definitely has my full support - which is why he changed his mind I now hear! They need to feel that they have the parents consent. Strange isn't it,when you feel like you dealing with such a delicate case-that they would actually delay it until you are ready for the ride(I know he wouldn't have made the call if it was detrimental to her). But it works,cos now I can't wait for it to be over.

So from what I've heard from various sources,its pretty heavy going. There's the initial days in ICU where the whole ventilator thing is apparently an adjustment to get used to,to the days following where you stay with the child and basically do all child caring while the nurses just prod and poke when they need to! So we'll see!

Before then there's lots to do- try see a physio and speech therapist...but why in this world are people incapable of phoning people back.

For now,life continues to be day at a time,trying our hardest to get her to keep these medicines down,trying to find the time to have even 5min of play time. But during this all,this little girl remains so adorable,sweet and fragile...

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Wednesday, 9 June 2010

My hope

We don't yet see things clearly. We're squinting in a fog, peering through a mist. But it won't be long before the weather clears and the sun shines bright!
But for right now, until that completeness, we have three things to do to lead us toward that consummation: Trust steadily in God, hope unswervingly, love extravagantly. And the best of the three is love.
...The Message

Monday, 7 June 2010

Appointment day

Seems like the usual...big appointment...big decisions...but no answers.  waiting waiting waiting - brings back bad memories.

Doc phoning back tomorrow morning to let us know what the he and the surgeon have discussed and decided. If they operate, could be as soon as Wednesday, that means hospital tomorrow. Would be nice to have at least a night's notice!!! Ok - enough Carol. I'm preparing for operating, and bonus if medication is the choice. Well...theoretically thats what I'm telling myself I'm doing!!

The first big doctor day

Because of Katelyns slow weight gain last week,we decided to phone the cardiologist.Were due to see him in ten days time anyway,but felt it right to keep him updated on her progress.My darling husband makes these calls-wow how much I appreciate that! He sounded concerned,says she may be becoming more symptomatic and they may need to do the banding op.If they do, it could be as early as next week.So here I sit,3am on sunday night,night before this appointment actually really nervous.So silly,because I know whatever happens it'll be in katelyns best interest and the right thing to do.Maybe its because I may feel disappointed that we may not have made it far enough for her to have a once off surgery,or just that I don't feel ready to deal with surgery yet.anyway,we wait and see.
Reminded of 1cor13 in the message TRUST STEADILY

Sunday, 6 June 2010

The weight gain and my time thing

Never thought I'd be celebrating weight gain. Not that I'm celebrating today, as her weight is so up and down.this week was a 60(week9to10).Never beeen that low before.We did have vaccinations and changed cycle to 3.5hrs in the last week - shall I just put it to that? But now we back to 3hrs.Horrible. Feel sad about it - especially when you don't know if its because of something or just 'cardiac' related. Could have been with her more I'm sure.
I need to get myself to relax [not that i'm uptight...more just rushing around doing things],spend time doing KMC with her and just not be rushing aound-is always the best answer. Good for everyone. I believe strongly in skin-on-skin...even after two months. Why do the Africans hardly have colic? Babies with the mothers ALL the time. Of course its so effective at birth, something that I long to have had, but do believe that she's happiest when she's right with me, skin on skin - not with me rocking her in panic because i need to get her to sleep independently before she creates bad habits. I'll get to that one day.
I'm feeling pressure to do things,but I actually just want to do nothing.Don't want to sort out my house,have tons of visitors, get out and about, clean up, wash up etc.just want to move into my bedroom or sit on the couch and not have to do anything. Not in a 'bad' depressed way, more just in a time together, bonding way! Anyway,will take it week at a time,but when I already look at the calendar for next week...i wonder where this is going to come in!

Tuesday, 1 June 2010

being 'Normal'

What am I meant to do now-how do I know whether to follow the 'normal' course,when not to,how to have high standards,when to expect her to do things as others,or not? May God give me the grace to begin to establish my feeling, my gut, whats right for us.

Daily reminded that I'm not in control of this all.She is in His hands,we go ahead doing the best we can.On her down weeks,I realise there is so much to this girl that I don't understand and how much I have to learn,on the up weeks I just think I have a 'normal' child.I want to act as tho I have a normal child.Although it sounds strange, I don't see why it should be so different.  Because its not. She's a baby, does baby things, needs what babies need - she just happens to have a few other unique aspects too. She's so floppy i can hold her in the cutest positions  - she's our flopster and she's half the size [ok not quite] of other kiddies her age. Scary how we establish our view of 'normal through our experience of life and society.  My challenge, as the weeks go by i can see how it exponentially changes. I've still got lots of processing to do...but for now...
Katelyn is normal. She's my normal. She's my beautiful daughter.

Tuesday, 25 May 2010

the GIFT of life...

Katelyn has showed me how incredible LIFE is. Seems strange to think back to the day when I questioned that.

So many sad stories to those connected around us - miscarriages, stilbirths, complications, terminations. So many different circumstances, but in ours, she's shown me. her LIFE was worth it.

Saturday, 15 May 2010

Where it all began

We decided last year (2009) that we weren't quite ready for kids-but that it felt the season was coming soon- so in a few months into the year I'd go off the pill. At my checkup after that my gynea diagnosed me with a condition which would most probably result in me struggling to fall pregnant. I was devastated of course.However after a month or so,we thought that actually we could do with a bit more time so felt comfortable that the timing was meant to be. After almost 6months I fell pregnant-after not 'trying' at all. Didn't have a clue until just over 8weeks. Did the test by complete chance(due to some woman in pick n pay!),came back positive...and went out for a glass of wine! We were suddenly terrified!!

I didn't have bad morning sickness so was overly grateful for that. We went overseas from week 10 to 12,and only got tired after that. I was clearly being looked after from above. I started to think about birth,our home,our life post baby etc! So exciting! Of course for a few months in the middle I was just pregnant,we hardly spoke about it we were just getting on with life. Its way too long to be completely drawn into it for 40weeks!!!

On 9th december 2009,we had our 22week scan scheduled.Simon and I met there,had both had chaotic mornings,I was in the middle of a workshop and remember still planning what I was going to say when I got back when I was lying on the bed. It was a looooong scan,they go through so many things.But its beautiful,seeing this creature inside you,falling asleep and then waking up and being all lively! Totally incredible! I'll never ever forget that moment. I was holding simons hand,she went over the heart and suddenly stopped talking and kept scanning over the same area. I knew something was wrong. Then she said it.'It looks like there is a hole in the heart.'-in a very nice way. I can't say my heart sank,because I was in complete shock. She then continued trying to show us what she was seeing and said that she wanted to call in her partner to confirm. She walked in,took her what felt like a split second to confirm-definitely hole,in both chambers.

They then said a few things to each other,and the partner then started chatting to us. I'm not sure how much I took in,but I heard association to Down Syndrome,amnio,would we like to know,can assess options. Left there,due back at 5pm for the amnio as we had decided that we'd rather find out. Not sure if I've ever felt like that before. Numbness all over. Wondering how something could be wrong with my perfect little bump that I'd been feeling kick for weeks. Waiting then became our game. Waiting for the amnio,waiting for results,people etc.

So I had the amnio,the longest needle ever directly into my uterus,obviously I couldn't watch. Neither could simon. In the waiting room before-hand there was a girl in tears,I thought my tears were bad! Then heard that her case was the same as ours but with further complications,at that stage I felt like ours was bad enough.

The days that followed-were filled with nothingness,yet so much. We were hoping to get the results by friday,so we chatted to a few people that we knew who were connected to DS in some way. We were now on the road of how to figure out whether we would terminate or not. We had no idea how to make that decision,and no-one really told us either. We wished we had been told. The first night we hardly slept. So many questions haunting us.

Friday came and we were clearly not going to get any results,it was then confirmed that the tests should be done by monday. I was furious,couldn't imagine going through the entire weekend trying to make the biggest decision in our lives when we didn't actually know what we were dealing with.

Those first few days I was so completely devastated, plus I was a little worried about the risk of the amnio too. Simon really looked after me. My mom was away at the time,my dad was around for one evening before he went away. A blessing looking back I think. I gave simon and I the time we needed. Our friends were incredible,our fridge suddenly had food in it,always checking up on us. Then after those days,he was just completely finished-wiped out,exhausted,almost emotionless...and I looked after him. Luckily we were never really low at the same time. Wow,amazing how these challenges bring people together.

The weekend was the best thing that ever happened to us. It really gave us such a peace(and numbers of plp were praying4us-funny that!).We had worked through so much,learnt so much-it was time to come to some conclusions. We decided to try get to an answer before we got the results,but then would review it once we heard.

It woke us up. Simons phone rang,it was Steffi - all I think she said was 'the result has come back positive for DS'.(she was as nice as she could be).He hung up and we cried.I couldn't believe it. Our lives were seriously going to change. The day was bit of a blur. We passed the message on,but didn't talk to anyone for most of the day. We went to see Steffi that afternoon-i couldn't have faulted one thing she did,she was excellent in dealing with it all along with all our questions.

I guess it doesn't matter what followed,but we stuck to our decision to keep the baby. Over that time,we had some incredibly hard conversations with others. I will never know how hard the process was for our families(and friends),but I know they just wanted the best for us. God knew what was best for us.

The termination decision for us was based on a number of questions we asked ourselves (please note-these were related to our specific case,not a black and white termination or not question). But I knew in my heart all along,that termination would destroy me forever. Some may have said it would have been a few months,but I knew it would be forever.

When I look at this gorgeous little girl now,its frightening to think that I wouldn't have her,that its this beautiful little soul that I wouldn't have given life too. I wouldn't change her for the world.

Not everyday has been easy since then, the weeks that followed are a bit of a blur. Dealing with the way people responded/didn't respond was so incredibly hard (not everyone of course).Yet,in amongst that we felt an incredible community around us who were right there for us-no matter what they thought of our decision.
I am not sure how to end my thoughts,everyday I think of another thing I hated/loved/thought about/struggled with/learnt over that time...but I guess that's what this blog is about...everything since that day...