Monday, November 28, 2011

Ginger Bear goes to Hostible

Ginger Bear has a piece of yarn taped to his nose.

The other end is taped to a small ziploc bag which is topped up regularly with a toy baby's bottle.

Ginger Bear has a 'lion' (line) on his 'test' (chest) - so I am reliably informed (I can't see it, the ginger hair seems to be blocking my view).

Ginger Bear is a little bit sick and needs to go to hostible (hospital).

Ginger Bear is now in the hostible with his mummy taking care of him with the help of nurse Erin who is dressed in scrubs and wielding various syringes and other medical implements.

I think I will let them have their game for a little longer, school work and chores can wait.

Saturday, November 26, 2011


This week was so.......easy.

Don't get me wrong, it was still busy.  Crazy busy.  But those two adjectives have described my life for a good few years now so there is a degree of familiarity there.  There was the odd mini-disaster.  For example the cap came off the medicine port on Kaylee's tube this morning and the pump spent a while feeding Kaylee's rocker instead of feeding Kaylee!  There were challenges.  We got Kaylee's pram this week.  I gave mine away last year because it's been years since I used it, my newborns usually just get put in a baby carrier.  The pram itself is fabulous but getting the pump hooked up and hanging the bag so it ran without alarming was a bit of a logistical challenge.  We got it going though and spent the a good couple of hours in Kmart.  There were no crises, no traumas, no disasters.   Our paed is very impressed that we have had two weeks at home without her tube being pulled out!

We are finding our groove, our rhythm, and for the most part I have been pleasantly surprised how like our old normal our new normal is.  While I am expressing I have someone or other on my knee or sitting beside me going through their school work or reading with them.  We have celery on the kitchen bench drinking food dye (our current science project - the kids have managed to make some fabulous multicoloured celery), home-made Christmas cards half finished and aside from Mount Fold-more on the couch and a disaster area that is my bedroom the house actually has some form of order to it.

And the kids are pretty fabulous.

I do some range of motion exercises with Kaylee twice a day and at least one of those times we do them in a warm bath (she loves her bath!) so when I get her ready for her bath I often talk to her about her 'aqua-aerobics'.  Today Christopher asked her if she wanted to do her 'aqua-batics'.  That kid cracks me up.

Anna sings Kaylee songs of her own composition.  My favourite has to be the 'Settle Down Song'.  It consists of two lyrics - 'settle' and 'down' sung at a very high pitch.  The thing that cracks me up the most is that it works.

We went to Kmart this week so the kids could spend some money that they got.  Billy found a toy dinosaur left on a random shelf and fell in love with it.  The thing was meant to make noise but did not so we found them on the shelf and found one that worked - no joke it sounded like an evacuation siren.  Billy opted to buy the one that DIDN'T work!  He was quite upset when we got it home and a few days later it started working again and cried until I told him I'd take out the batteries for him.

We've been learning a bit of sign language so we are familiar with it if Kaylee needs it as she grows (a lot of kids with CDLS have speech difficulties) and Andrew is already picking up a few signs the smarty pants!

Erin and I watched Bambi 2 for our girls night (her choice, not a cinematic masterpiece but we had a great night) and we bought a big bag of marshmallows.  She spent the next few days making hot chocolates for the other kids and floating her special marshmallows in them.

Kaylee has started reaching out to touch her toy Mr Flutterby and is becoming more and more interactive.  She is utterly precious.

We have had our emotional and clingy moments to but they are the exception rather tan the rule.

Having a full freezer has definitely helped (thanks Anita and Christina especially!) and having my fabulous hubby home for a time has been wonderful.  He went back yesterday to work for a day and we all missed each other lots!  I did heaps of tidying and organising before Kaylee was born and it is paying dividends now.

Things may change even from day to day but right now it is all so easy and good I can hardly believe it.

Wednesday, November 23, 2011

Top Ten For PICU

I know there are a couple of readers who are facing the PICU experience in the near future so I thought I would share what has helped me.  Here are the top ten items I will be taking with me for my next PICU experience:

1.  My Hospital Bible.  When Kaylee was in hospital I would read two psalms, a chapter of Proverbs, Matthew chapter 6, John chapter 14 and Romans chapter 8 every day (I still do most days!) and it carried me through.  There are all sorts of underlinings and comments in the margins of that Bible.

2.  My breast pump.  I have a small, portable electric breast pump that I bought from Nursing Angel.   Being able to use it anywhere is a big bonus as I didn't always want to use the expressing rooms and seeing as Kaylee is now permanently hosting a colony of antibiotic resistant bacteria thanks to one of her hospital grade infections I can't use a hospital pump at her bedside or anywhere else where she has her nappy changed.  Being able to pump in my room just before I sleep and just after I wake up also makes life easier.

3.  My MP3 player.  Being able to listen to music such as Josh Garrels was a huge lift to me.  Especially on days when I had loud room mates to contend with or I just needed to zone.

4.  My netbook.  Writing is my therapy and being able to plug in to the internet for research and communication with a wireless broadband stick (I bought mine from Family Resources at the hospital and paid much less than retail) was a great boon.

5.  My mobile phone.  I hate mobile phones and didn't own one until the night before I flew out with Kaylee for the first time.  I still hate them, but I recognise they have their uses.

6.  My drink bottle.  It is hard to remember to eat, drink and sleep in this situation.  Having my drink bottle with me meant it took slightly less effort to stay hydrated than it would otherwise be.

7.  A go-to guy.  I think it is vital to have someone to be your contact with the outside world.  Bek played that part for me during that first Melbourne stay and it was invaluable.  People will be curious and want to help, I think it is necessary for ones own sanity to have a central point for everyone to get their information from to prevent the phone ringing non-stop.  It is also helpful to have someone close by to act as gopher to go and get anything you need.

8.  Comfortable and presentable clothing.  Lots of sitting, lots of strangers, not a lot of time to choose outfits or do laundry!

10.  My leather journal.  I use it for journaling but mostly for writing down things like the nurses name, things I want to research

If you are a reader who has a friend or family member going through the PICU experience the things that helped me most were the fruit basket I got sent, some home made soup, SMS and email messages of encouragement (often I had the phone off when I was with Kaylee and when I was away the phone ringing would make my heart stop a little) and practical offers of help directed to my go-to person.

Hopefully there is something that will help someone else going through the experience to make the trip a little smoother.

Saturday, November 19, 2011

An update and a Thankyou.

Kaylee is doing everything she should and nothing she shouldn't.

Her feeds have gone up to 25ml per hour over 22 hours which gives us three hours a day disconnected from the feed pump which is awesome.  I have a love-hate relationship with the feed pump and breast pump.  Kaylee spends 22 hours a day hooked up to a pump, I spend 6-8 hours a day hooked up  to a pump.  We're all about the pumping!  I love that we can feed her this easily - not so long ago Kaylee would have had to stay in hospital until after she got over needing continuous feeds because she would have had to have a nurse sitting by her bedside 24 hours a day pushing in her feed.  I love that my milk is going in to Kaylee and that it is helping and protecting her.  Right now it is all Mama milk with no alterations.  It is sort of like having a really close friendship via e-mail.  I am constantly swirling her bag and poking it so as much cream as possible will go down the tube rather than stick to the inside of the bag.  We have worked out how to hang feed in the car and my breast pump also plugs into the lighter socket in the car which makes us fully portable.

I put her to my breast about twice a day for some 'oral play' so she can pretend to feed.  This helps her mouth muscles to keep working and helps her associate good and happy things with having things in her mouth.  Many kids who are exclusively tube fed develop oral aversions where they hate anything going in or near their mouth.  This gets to be a bit of a problem when it comes time for them to actually start eating.  I have a vague hope that perhaps after her surgeries she may start to feed direct for at least some of her food intake but it's a long shot and we will have to see how we go.  Seeing as Kaylee is being constantly fed she never feels hungry.  This means she sleeps a lot with no hunger pangs to wake her for feeds and cuddles.  I make the decision several times a day to let her sleep (which she needs in order to grow and get big enough for her surgeries) or wake her for cuddles and play (which she needs for cognitive and physical stimulation and development).  I check her tube about twenty times a day to make sure it hasn't moved and I tend to fret about it first if she is upset for an extended period which is silly because it doesn't hurt her and is unlikely to move unless someone moves it.  But a tube is a tube and while we are positively minimalist in the tube department compared to the last couple of months it is a yellow reminder lying across her face every time I look at her of the road we have travelled and some of the big hills (known and unknown) that are yet to come.

Kaylee herself is delightful.  Her eyelashes go on FOREVER!  She found her hand last night and I spent a good ten minutes or more just sitting watching her watch her hand.  Her brothers and sisters adore her and it is rare that she isn't the centre of someone's attention.  She is still in size 00000 clothes but there is one garment that she has grown out of.  She is quite the fashionista and the big kids love to choose her hair clips and clothes whenever they are allowed.  I would swear that sometimes she is smiling although it is hard to tell because the corners of her mouth naturally turn down and often when I think she's smiling she has her dummy in her mouth.  She also farts like a champ much to the delight of her brothers.

The bigger kids are wonderful.   We did a science experiment this past week where we put celery into food dye solutions and the four oldest had a blast.  Unfourtunately a couple of the kids had explosive diarrhoea this week which made things.....messy.  But through copious use of hand sanitiser etc.  Kaylee, Billy and I managed to avoid it and everyone is recovered. We are getting into something resembling a routine now.  We have started a new read aloud (Danny Champion of the World by Roald Dahl).  We watched a couple of movies yesterday but for the most part their screen time has been infrequent simply because the rest of our life is so full and rich. 

It has been odd finding a new normal.  Life BK (Before Kaylee) saw me changing 95% of the nappies (yes, I was that possessive over changing nappies) and doing the bulk of the cooking and cleaning while Jon worked ten hour days four days a week.  When he was home we would all spend time together working on projects or going on road trips.  At the moment Jon is home all the time and is changing at least as many nappies as me (more during the explosive period) and doing as much if not more cooking and cleaning.  As we settle in more I would like to take more of my old job back.

To be honest, when we were in the hospital I missed cooking and cleaning a lot.  I regretted not spending more time doing it when I was home.  I have come to realise all that time I spent putting off those tasks then being frustrated because my home was less than pleasant was so wasted.  The effort taken to just get in and do it was insignificant compared to the reward.  I have come to appreciate the small comfort of a tidy home, clean clothes and a hot meal so much more than I thought possible and I resent the wasted opportunities in my past where I could have had these things with minimal effort.  There is a saying "you don't know how strong you are until you have to be strong".  It could also be said "you don't know how hard you can work until you have to work hard".  When we were in the hospital I worked 14-16 hour days most days and I worked harder than I ever have before.  And it didn't kill me.  The effort to get up and wash the dishes or fold a load of washing seems so small in comparison.  Now days amid the strange mix of pumping, meds and normal life I am usually up somewhere between 5am and 6am and falling into bed somewhere between 10pm and 11pm on a good night (at times, later) and although my baby sleeps through most nights, her feed pump doesn't!  Compared to what I am doing now, what I was doing was a cruise.  But my day is full of cuddles, smiles, conversation and impossibly long eye lashes - and all of us together again.

I need to take a moment to shout out a big thankyou.  To be honest, I am not totally sure who I am thanking for what because during the blur of those weeks when Kaylee was in hospital we experienced a huge influx of generosity.  People blessed us with gifts, some I asked for through the blog but most were totally unasked for.  Much of what we have I have lost track of who gave it to us.  My freezer is full of food (two dear friends in particular went above and beyond the call cooking us up a storm!).  Kaylee is the best dressed baby about.  We are about to drown in clothes for the other kids.  I have the most beautiful shawl and crochet layette that my Ravelry forum sent me as well as yarn and needles dropped off for me at the hospital by friends who I am yet to meet.  People from my Homeschooling forum also poured out generosity over me while I was in Melbourne with food and other practical help as well as prayers.  The lovely Bek was a super pit crew chief during that first Melbourne stay when my world was imploding.  Friends and family watched my kids and helped Jon out in practical ways.  Jon's old work collegues passed the hat around to send us gift vouchers for Mother's Direct and cloth nappies which has enabled us to save huge amounts of money by having Kaylee in cloth nappies for the majority of the time (a bottom that small requires teeny tiny nappies!) and helped us buy some practical items for Kaylee's day-to-day care and some literature to help inform us.  Many, many people surrounded us in prayer.

We have also had a number of people give us money.  We are doing OK with our day-to-day expenses for the most part so we are hoping to be able to keep the majority of the monetary donations to help pay for our whole family to stay in Melbourne together during Kaylee's next heart operation.  This feels like an unspeakable luxury.  Leaving my other kids for an indefinite period again seems like an almost impossible thing to do and having Kaylee and I disappear would not be good for Jon or the kids either.  The Royal Children's Hospital will be in their new building by the time we get over there again with a two story fish tank, meerkat enclosure and fabulous set up to entertain sick kids and their siblings.  We also have family and friends over there who will be happy to help us out if we need it so it makes sense for us all to be in Melbourne and I pray that it is possible to do this.  I am certainly not asking for people to give us money, but I did want to let those who have given us money know what we plan to do with it and express my appreciation.

So thank you all of you.  Those who have prayed.  Those who have chipped in practically.  Those who have simply sent a few words of encouragement at the right time.  I am glad to be sharing our journey with such an amazing bunch of people.

Monday, November 14, 2011

My Arms Are Tired

A poem I wrote while Kaylee was in hospital.

My arms are tired
from holding on to you

It's been seven and a half weeks now
since you were born
since I have slept in my own bed
since I have eaten a meal with your brothers and sisters
around our table
since I have scolded them to pick up their toys
or finish their dinner.
or tucked them in with bedtime stories and prayers

For seven and a half weeks
I have slept in strange beds
on couches
and on chairs next to your warmer
the beeps and bleeps of monitors
weaving through my dreams
I have seen a world I never knew existed
and though you hardly way a thing,
my etherialy beautiful daughter,

my arms are tired
from holding you

I am pressed in at every side
by the pained souls of others
as we watch our children
struggle and fight for life
I have prayed until my voice was just
a solid lump in my throat,
I have sung with my voice cracked
my hand touching your hair
wondering if you could hear me
I have tried to breathe for you
just to keep you going.

My arms are tired
from holding you

and though my arms are tired
and my heart is breaking
and my soul has shattered
into a thousand shards
and the world is now viewed through
the prism of my tears

I have never felt stronger
and the world has never looked
so beautiful

Saturday, November 12, 2011

We're home

Coming home was like waking up from a bad dream.  We are already carving out a new normal with feed pumps, breast pumps, medications etc. playing a major part.  Today we had pancakes for breakfast and I am still in my PJ's at close to tea time - taking a day out for rest on the Sabbath.  Yesterday we had a picnic in the backyard complete with Kaylee in her rocker with her feed hanging from her IV pole.  We only have two chapters of The Chronicles of Narnia left to go and then we get to close the books and savour the memories as we move on to another world to visit.
 There are adjustments - the kids are learning not to touch Kaylee's pump and tube or my breast pump.  Jon and I both go full pelt every day from the first moment of waking to when we fall into bed at the end of the day (Sabbath is a very big hit here at the moment!).  There are also a thousand different false alarms and starting at rabbits in the bushes.  Last night I was administering Kaylee's meds and felt a bit of resistance.  Inside I heaved a big sigh and pictured Kaylee's tube being blocked up with her 6pm med because I didn't flush it well enough.  It's a tight rope act to flush enough to get it all out of the tube, but not so much that Kaylee ends up with too much going in to her small intestine at once and making her tummy sore and diluting the capsule contents can be tricky so I thought, perhaps, I had got it wrong.  The idea of having to go into hospital that night to have a new one inserted (a rather uncomfortable procedure that can take an hour or more) did NOT appeal.  I checked everything and tried again - it turned out the syringe had just stuck a little.  Little events like this can get a little tiring!

Her little snore sounds like a cat snoring and it is quite comforting to hear.  We are going to get some foam wedges for her to have tummy time and nappy changes on.  We discovered that nappy changes on a flat surface makes a small ocean of yellow stomach fluids rush out Kaylee's mouth and nose.  Not attractive.  We don't need a mobile, there are always a couple of faces hovering over her.  She is totally doted on by everyone - other than Andrew who ignores her or tries to steal her dummy.

Jon has done a fabulous job with the other kids and home.  Andrew and I are getting re-acquainted.  I left a 14 month old with about four teeth, only just pulling himself up on furniture with 0 vocabulary.  I have come back to a 16 month old with a mouth full of teeth (he's been teething non-stop since I left) who has taken his first steps already and can say a few words.  I need to check with Jon to see what he likes and doesn't like now.  Anna is fragile and very cuddly and plays peek-a-boo with Kaylee.  Christopher stays as close as he can and often asks "Can I touch Kaylee?" like he thinks she may float away.  Billy constantly wants to know if he can help (he laid out Christopher's clothes for him yesterday unasked) and really wants to get in on the practical side of things.  Erin has lost a tooth and grown two more since I left.  She adores Kaylee and would administer meds if I let her!

While Kaylee's needs have provided a different beat to our life right now (and most likely forever) we still add our melody.  Pancakes, picnics, story time and worship are still woven into our homelife.  The meandering conversations between Jon and I that have been the staple of the last 11 years still provide veins of gold to our days.  Cuddles, kisses, stories, discipline, changing nappies and wiping noses all pepper our days with their own unique colours.

And I love being HOME.

Blogging will likely be a once a week-ish affair now I am home.  Life is taking all my time right now

I have more to say than ever but I need to be with my family right now.

The biggest thing left unsaid to all of you out there is THANK YOU.

But I have six kids waiting to be tucked into bed so that will have to wait for later.

But rest assured, I will get back to it.

Somewhere amid living this amazing, crazy life I have been blessed with.

Wednesday, November 09, 2011

No Place Like Home

We are going home today.

Tuesday, November 08, 2011


We left the Children's hospital at 10:30 yesterday. In order to get a taxi with a rear facing infant carseat we had to hire a chauffeur which meant I had the door opened for me, got called "Ma'm" and sat on leather got to pay $101 - ouch! Our plane got delayed (of course, JetStar) and we got to hang out at the airport being all ordinary and stuff. Well, as ordinary as you can be when you are syringing milk into your baby at a rate of 1/2ml every two minutes for an hour. Kaylee's ears hurt a few times on the plane but other than that she was a gem and seemed to like being in her sling.

About ten times over the course of the day I had this conversation:

*gasp* "Oh my goodness she is so beautiful! And little!"
*smile* "Yes, she is"
"How old is she?"
"Two months."
"Ahh, she was very prem then."
"No, actually, she was born at 41 weeks"
*confused look*
"She has a rare genetic condition called Cornelia De Lange and as a part of that she has a heart condition. We are on our way home from our first heart op."
"Oh poor little thing!"

It is not a bad conversation to have (and one I have had any time I take Kaylee for a walk, even on the wards) and the general consensus is that Kaylee is beautiful. There are moments I would much prefer just to blend into the background and maintain anonymity but by about the fourth child I realised that blending in was no longer an option! I just have to work hard to make sure I am a good ambassador for large families, Cornelia De Lange, heart kids, cleft palate and all the other exclusive cubs we are a part of. My daily prayer is that through this I can still be a good ambassador for Christ and I find myself having to draw on His strength more and more the closer I get to home. My impatience to get home is bleeding in to a general impatience and I have to work hard to walk that line between advocating for Kaylee and myself and being a shocking bossy boots!

We didn't tell the kids that Kaylee and I were coming so it would be a surprise and so they wouldn't be disappointed if it didn't happen. And also so Jon didn't get five young children electric with anticipation to deal with - Jon and I were bad enough.

Seeing them was like a drink of cold water.

Now there are only a few things for us to sort out before I can go home and I am sure the nurses here will be very happy to get rid of me. I have spent all my time on acute care wards where medication times are kept to strictly, nurses study up handover notes as soon as they are handed over, breast milk is treated like liquid gold and everything is double checked. Here on 4K the nurses are completely overworked from what I can gather so they often have me standing at the nurses station quietly harassing them for the things Kaylee needs! It is very hard to walk that line consistently.

Home sounds good.

Blogging will be less frequent when I get home as life will be for living rather than writing about. I am hoping we will be home for a couple of months. We will be going back to Melbourne for a check up mid-December and having weekly checks with our doctor here in the mean time. We will also have all the early intervention stuff happening.

A new chapter of our adventure.

Monday, November 07, 2011

Kaylee's Whirlwind tour

Launceston 4N 8-9-11 to 11-9-11
Melbourne PICU 11-9-11 to 13-9-11
Melbourne 7 West 13-9-11 to 22-9-11
Hobart NICU 22-9-11 to 30-9-11
Launceston 4N 30-9-11 to 8-10-11
Melbourne 7 West 8-10-11 to 12-10-11
Melbourne PICU 12-10-11 to 21-10-11
Melbourne 7 West 21-10-11 to 7-11-11
Launceston 4N 7-11-11 to Yet to be determined
Home, Mole Creek Yet to be determined

2 states, 3 hospitals, 4 wards, 4 planes, 1 ambulance, 1 major bypass surgery, 3 general anaesthetics, 3 central lines, countless specialists, nurses and doctors.

I'm thinking of having a tour shirt made!

Sunday, November 06, 2011


When I was teaching there were some words that I would ban kids from using in their stories. "Nice" was one of them. As in "We went for a nice walk to the park and had a nice picnic. It was nice.". "Pretty" was another "I had a pretty dress on and saw a pretty pony, it was pretty fun." Another one that would really get me riled is "awesome". "I played my awesome nintendo, Spiro is an awesome game. Then I made an awesome sandwich, it was awesome." I would teach the kids that by overusing a word, they would decrease its value. If their nintendo, game and sandwich are all awesome, what word are they going to use when they want to describe looking out from the summit of Mount Everest or walking through an ancient cathedral while a skilled choir sings 'How Great Thou Art'? How are they going to communicate “filled me with awe” when “awesome” has been used up on every second weekend? To paraphrase immortal words of Horton the Elephant - say what you mean and mean what you say.



There's a difference.

If I had my way, there are some words and phrases that would be locked away from overuse until they regained their meaning. Politicians should be banned from using the phrase "working families" and the word "unAustralian" (although there is legitimate debate over whether UnAustralian IS actually a word). They have been overused to the point of meaninglessness. I can't watch the news at election time without going into a long rant about word usage.

Another word that I think should be locked away for it's own good is "inspiration".

Type ‘define inspiration’ into Google and you get:


Noun: 1. The process of being mentally stimulated to do or feel something, esp. to do something creative: "flashes of inspiration".
2. The quality of having been so stimulated, esp. when evident in something: "a moment of inspiration in an otherwise dull display".

Winston Churchill inspires me. He said “When you’re going through Hell, keep going.” At the height of the Blitz when it looked like Britain would lose the war and thousands of young men were dying because of choices a few were making he made his famous “We will fight them on the beaches” speech. Which was the British aristocratic equivalent of standing in the English channel and saying to Hitler ‘Bring it’. When he escaped from a POW camp as a young man as the train he was stowed away on crossed into safe territory he threw back the covers and yelled “I’m Winston Bloody Churchill and I’m FREE”. In all his alcoholic, cigar smoking, pill popping, mentally unstable and long dead glory, Winston Churchill inspires me (mentally stimulates me) to keep going and survive even when odds are stacked against me.

Yet when many people use this word what they are trying to communicate is: ‘it gave me a warm, squishy feeling inside and made me think about doing something. Perhaps. One day. If I have enough coffee and the wind blows right and it doesn’t conflict with any appointments’.

Stories of celebrities loosing 10kg and kittens being rescued from small spaces are pinned as inspirational by newsreaders and interviewers. There are entire sections of book shops devoted to ‘Inspirational’ literature that seem to be filled with funny pictures with cliché captions. People sit around after church glibly describing the morning service as ‘inspirational’ but nothing in their internal or external world changes. People read or witness extraordinary things and they expound on the inspirational qualities of them…then they go on just as before. And the value of the word decreases.

Surely if you are inspired you should have something change at least in your internal world if not your external.

Being the inspiration for someone else rarely changes one’s life very much. Shakespeare had been dead for hundreds of years before I was born and is not touched at all by how his words inspire me. Inspiration is intrinsic to the individual. People have been inspired by rocks, trees, canyons, rivers, and natural disasters. John Newton, author of ‘Amazing Grace’, was inspired to convert to Christianity by a storm that nearly sunk his ship. The storm was left unchanged by their encounter but John Newton was not. In order for a person to inspire another person they do not have to be perfect or even particularly good. Winston, as I mentioned before, was by many accounts an alcoholic, cigar smoking, pill popping, mentally unstable individual who would have been a right royal pain to live with; but he inspires me. What is a catalyst for inspiration for one person may be inconsequential for another. The dandelion in the footpath may be a strong metaphor for life and resilience to one person and an impetus to go and buy some weed killer to another.

I cringe a little when people tell me I am ‘inspirational’. Being their inspiration changes me little if at all but I wonder if it truly changes them. If hearing about what we have gone through inspires someone to get to know Christ that little bit better or change the way they deal with their kids and spouse for the better, that’s great. It doesn’t really change me any but good for them. If they mean inspirational like the poster of a kitten hanging on the wall with the caption ‘Hang In There’ that everyone ignores or looks at and then forgets it’s… insulting.

There have been portions of the last two months that have been like a waking nightmare. There have been portions of the last two months that have felt like my heart was ripped out. There have been portions of the last two months that have nearly broken me. The whole of this time I have been walking with my Shepherd through the Valley of Death – aka, Hell. There have been days where I have had to just take Winston’s advice and keep walking.

So before you tell me I am inspirational, take a good hard look at yourself and ask “How have I changed?” If you have truly changed and for the better then don’t bother telling me about it, talk to the Holy Spirit – author of inspiration. If you haven’t changed and your daily life and thoughts are the same as they were before, please don’t reduce what I have gone through to a kitten poster or two minute youtube clip that gives you a warm and fuzzy feeling.

Again, to paraphrase the immortal words of Horton the Elephant, say what you mean and mean what you say.

Or else I’ll give you a detention.

Friday, November 04, 2011

All my bags are packed, I'm ready to go.....


Never have I typed more beautiful words.

It feels a bit like I gave birth then had a two month labour.

We will be at the Launceston General Hospital for a little while (days rather than weeks I hope) to make contact with our various people (pediatrician, dietician, speech therapist, occupational therapist and all the other "icians" and "ists") and to show off how well we can work a feed pump (we rock the feed pump) and manage meds. Then HOME. I will set sleep in my house for the first time in two months. Under the same roof as my husband and children. In the same room as my baby daughter.

Kaylee's surgery was a finger in the dike measure to buy us time for her to grow bigger and stronger before a full repair. The shadow of future surgery is on our horizon and we need to be ever vigilant in monitoring her condition. It is a spiritual discipline to not borrow worry from tomorrow whilst still planning for future possibilities.

But right now we are winding down this chapter in Kaylee's story.

And starting a whole new one.

Source: via Nicole on Pinterest

Thursday, November 03, 2011

A Complex Diagnosis

Trying to diagnose someone is like trying to describe purple.

Think of purple. Now think of everything you aren't thinking about that can still be classified as purple. Different shades on a paint chart. Mulberries on a summer day. Velvet. Sunsets and sun rises. Amethyst, mauve, violet, grape. All these things are purple and purple is all of these things but none of them describe the entirety of purple.

Think of Kaylee. Now think of everything about Kaylee that you weren't thinking of. She is a cardio baby, a reflux baby, a special needs baby, a quiet baby, a small baby, a CDL baby, a baby with long eye lashes and beautiful curly hair, a baby who likes being wrapped and sung to, a baby who loves music, a cleft baby, a daughter, a little sister, a grandaughter, a niece, an NJ tube baby, an early intervention needs baby, a cute baby, a baby with hair clips, a girl baby, an ESBL baby, a size 00000 baby, a baby who is gaining weight, a baby who
is loved.

And all of these descriptors only scratch the surface.

It is my Job as Mum to get to know all of these facets of Kaylee and to remind my various medical staff that there is more than one shade of Kaylee - there is a whole spectrum.

It is hard to separate Kaylee from what is essentially her and what is a defect.

Hole in the heart - defect. Don't want it, don't like it, isn't fun, would like it fixed.

But another marker of Cornelia De Lange Syndrome is her beautiful long eye lashes and her thick curly hair.

If I could snap my fingers and remove all Kaylee's problems, how much of her would I remove also?

I read my children a picture book about Ted The Better-Than-New-Bear about a teddy bear who had gotten raggy and old. He was repaired, cleaned and given new overalls and his owner declared him BETTER than a new bear because he was all fixed, but he was still HIM.

One day Kaylee will be all fixed. Not by any particular surgeries - none of them will solve ALL her problems. Not by any particular therapy, drug or intervention. One day she will be healed by God. I have full and complete faith in this. Perhaps it will be tomorrow, perhaps it will be when Jesus returns. Like the parable of the wheat and the tares, everything good in my daughter will be preserved and everything that causes her pain will be cast away. She will be made better-than-new.

And every shade of Kaylee will shine.

In the meantime, tonight her central line will be removed. Her NJ tube placement went well. Strong words about planes and Monday are being flung about willy-nilly. A walk outside may even happen tomorrow. Home is on the horizon.

Wednesday, November 02, 2011

Counting down

One more sleep and Kaylee's IV antibiotics are finished.

One more sleep until Kaylee's NJ tube goes in and her feeding starts to get sorted.

One more sleep until I can take her outside for a walk for the first time ever.

Two more sleeps and we reach the day - Friday - that has been mentioned in the same sentence as the words "aeroplane" and "Launceston".

I have told Erin that I am hoping to be home in November.

It is November.

Hopefully sometime soon I can take Kaylee home.

And then I am going to have a really big.....sleep.

Tuesday, November 01, 2011

Route Recalculation

When we stray from the planned path or take a different turn the GPS in our car announces "Route recalculation!" and it plans a slightly different route which takes into account our detour.

I feel like my internal GPS has been saying "Route recalculation" pretty much non-stop since the start of September.

I am a goal oriented person. I can have slight tunnel vision when it comes to achieving what I see as success and being in control of myself and the things and (to an extent) people under my care is very important to me. When I feel like I am not in control is when things can get a little messy.

When Kaylee went to three hourly bolus feeds I was thrilled. I was back on familiar ground seeing as all my other babies were fed three hourly through the day as newborns and I was finding a rhythm that I could dance to. I was picturing wandering around the house or walking down the street doing our daily life with Kaylee tucked in the sling or ergo. I was planning getting back to a normal life. And then she started having bradys (patches of slow heartbeat) which were obviously due to silent reflux. So Thursday morning she will have an IJ tube placed which will go through her nose into her small intestine rather than into her stomach. This will mean that rather than the three hourly feeds I was celebrating we will be on continuous feeds and when we wander around with Kaylee in the sling, I will have a feed pump in a back pack on my back. Instead of those moments of organic normalcy, she will still be hooked up to a machine. For months, possibly years, maybe even (worst case scenario) the rest of her life.

And I hit a wall.

And I continued to smack myself and anything else I could reach against that wall for about four days.

I agree that the IJ tube is necessary not only for her heart but for her digestive system. Many kids with CDL end up throwing up blood by their first birthday due to severe reflux and Kaylee needs all the calories she can get to help her to grow before her next two surgeries. I have been advocating managing her reflux pro-actively for weeks and openly harassing medical staff to make sure it was taken into account in long term planing as well as daily observations.

However coming to terms with the reality of continuous feeds requires a route recalculation.

The final destination or goal that I am reaching for as a mother is facilitating my children to grow to be as happy, healthy, strong (physically and emotionally) and wise as they possibly can and that they know and love God in a personal way. I also want them to be able to fulfil their full potential in whatever role they choose to pursue and that God has ordained for them in this world. This goal is equally as valid for Kaylee as it is for any of my other children. The route, however, has very different scenery than I am used to.

To a degree I need to mourn the loss of the scenery I expected to see with Kaylee. When all of this started I remembered a piece that was read to me years ago called Welcome To Holland. It describes the experience of having a child with special needs as being like planning a trip to Italy and getting off the plane in Holland. I would encourage you to go and read the whole thing for yourself but it finishes up saying:

And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I cry for three hourly feeds. I weep for breastfeeding my baby directly. I mourn for taking off in the car taking only nappies, wipes and a chest full of milk. I am frustrated that Kaylee, and by association my other children and husband, will hurt because of the bad things associated with Kaylee's conditions, and some of them (like heart surgeries, separation and trips to PICU) are very bad indeed.

But there is a reason why Kaylee is called my Tulip.

And there is only so long you can throw yourself against a wall before you have to recalculate your route and keep moving toward your destination.

It is just a matter of watching the windmills out the window as you go.