A Working Mom

Its been 2.5 months. I've had a half 'real' job. Real it is...but technically half-day.

Its been a fascinating journey since I started working. There's the whole leaving, being organised, child ready and prepared for what may lie ahead for the day...but that's just a side-line and can be as big a deal as you make of it (I think!!!!).

What's been interesting to me, is people's responses to the fact that I'm now formally working after 19 months of being at home (or in hospital should I say :) ). I get many 'congrats, so great that you ready for that now', 'must be so nice to have some other stimulation', 'so happy for you that you can have a bit of your life back', 'you've done so well so far, time for a bit of a change'. I've found it quite strange trying to process what people perceive that I may be now, or the point I've reached, or whatever else they thinking.

Truth is, I wasn't looking for a job. It just happened. It happened quickly too. No time for planning, preparation, organisation and all that. I'm ONLY doing it, because I'm so interested in the work...and the financial benefit is an enormous blessing to the household.

I feel like others are defining me as something different now because I'm working. I don't want to be defined by what I do with my time, but by who I am. I don't want to be defined as someone with a special needs child, who's working half-day...I want to be defined as a person with real character-traits, with a sense of humour, who cares, supports, loves, enjoys life. That's other, but most importantly, I don't want to feel I'm more valuable now that I'm working, I want to find my security in who I am, not by what I do.

**Yes, so on the side...I enjoy the work. But it does come at a big cost. Katelyn needs lots of particular, specialised attention, and her medical needs in the past few months are incredible difficult to keep on top of, so it creates a general average state of chaos in the household. Without my amazing husband, we'd be nowhere. Who knows where the year ahead takes us, but as long as we're true to who we are and what's important, that's my true desire.  **

Encouragement

My encouragement from Job 11 today. In amongst so many questions about life,I know the peace of God.God truly is good.

 17 And your life will be brighter than the noonday; its darkness will be like the morning. 18 And you will feel secure, because there is hope; you will look around and take your rest in security. 

Don't want to...but have to...Constipation

Never in a million years did I think I'd be writing or thinking this much about something I really don't want to discuss! But I figured, for my own benefit - I'm going to have to write this all down, so that I can refer back to it when I've lost my marbles :)

We deal with significant constipation issues, a mixture of contributing reasons: post-op (the effects of so many very hardcore drugs-morphine,anaesthetics etc in a short space of time), muscles just not strong enough from the low-tone with Down Syndrome and then the fact that she's really not mobile at all, so when she starts to move around it'll get much better I'm sure.

So here's my list, starting with the most natural things, the things I've learnt from various doctors / physio's / specialists...and the progression that I take (daily) when figuring out at what stage of the process Katelyn is at...the joys :)

*I really may have left something out...if I do...I'll add it in another day, so forgive me!*
**Obviously, drinking the right milk and eating good healthy foods(not processed/refined) is an essential**

Natural, non-medicated options:
-Flaxseed oil                            
To mix a teaspoon into food daily / twice daily. Has so many other benefits too.
-Fruit...like prunes, peaches, paw-paw            
Fruit-fruits that help your bowel move. Be careful, if she doesn't drink enough, high fibre fruits require lots of liquid to work successfully, otherwise it has the opposite effect (apple, pears, banana's) 
-Bathing or sitting in warm water
So good for the stomach and bowel, relaxes it 
-Water and sugar water....always good
-Glycerine suppositories
These are not medicated, your body doesn't become reliant on them in any way. They only release the 'plug' if there is one.Can give multiple a day.
-Tummy Massage
         
To the next step:
-Laxette
Laxette is not a laxative. It just helps soften the stool, it doesn't make your gut move. Katelyn is on a very high daily dose of it, and I am continually re-assured that she will not become reliant on it as you would if you took a laxative. Can give a really high dose - though can end up in cramping and discomfort.
-Pegicol
Pegicol seems to be far superior to Laxette. Sachets that you need a prescription for. The trick is, they need to be taken along with enough liquid for it to bind itself too. So unless Katelyn drinks 150ml minimum when giving her a              pegicol, it can have the opposite effect. When she is very bad, she unfortunately doesn't drink much, so I often have to rely on Laxette and not Pegicol as I probably would prefer. 
-Dulcolax
This makes the bowel work. Katelyn seems really uncomfortable when I give her one, but I have to do it often. Preferably only every second day, and not for an extended period. 

My new next step to avoid hospital:
-Enema(1/2 adult dose)
Not even going to go into it...

If no luck...then back to the doctor, x-ray....then hospital admission for a washout....

**Thanks...I needed to get my head around it again. I'm so full of medicine schedules, that sometimes I forget to apply my mind to this daily, as its really (for me at least) about daily staying on top of it if possible, otherwise she stops eating, drinking and it only gets worse. **

Where did the time go?

Feels like its been a lifetime since my last post.Yikes...its November!

Katelyn has had a tough time since being home, with throat, nose, tummy, wound issues...all one after another. She ended up back in surgery after 4 weeks at home, as her wound wasn't healing around her pacemaker. So they cut her open again (not the whole way up, but almost), moved her pacemaker and stitched her up nice and tightly. Out of theatre and back onto a ventilator, which really was just hard to see...after all that she's been through...going in for a 'surface' surgery...and back to that state.[I of course know it was the best thing]. Anyway, she struggled a bit in hospital, and came out after 6 days on more medication than after her open heart surgery! After that again, has been one thing after another, ears, coughs, noses etc...with the one odd happy day inbetween, but her poor little body I think has had enough of getting attacked by things! I keep trusting that we're on the road to 'good health' soon...or at least to get to 7 days straight of a happy healthy little girl! Desperate for her body to get a chance to get strong again, start preparing for crawling (military mom almost in action) and learning more and more.

I've started working. In amongst the medical chaos I'm trying to get a good few hours work in a day...proving to be interesting jumping from work meetings to doctor's appointments, sending Katelyn with others to doctor appointments, daddy covering for me while I'm at work. So all interesting. It feels like madness, but this madness feels right (how is that possible!). 

But in between all of it, Simon and I had a great night away, we celebrated Simon's 36th birthday (getting seriously old!), had some good times with friends and family. Katelyn still manages to charm her way through life, making lots of doctors, granny's, passers by, nurses all smile...which always warms my heart. When I think of the past 7 weeks, I can't quite believe what she has gone through (and I wonder why she bursts into tears when she sees a syringe!) but still, even when she's feeling pretty rotten, she smiles and gives me a nice warm cuddle and I just want to squeeze her tighter.

Think we're in love with her more than ever before, so proud of her and looking forward to what lies ahead for her in the summer months to come.

I'm 18 months and...
- 2 (3 kinda) heart surgeries done and dusted...lots of sickness inbetween, but I don't moan that much
- almost packed away all 3 - 6 month clothes, but busting into some 12 - 18 items slowly
- Sitting, rolling, reaching, stretching...now just gotta get to crawling
- Babbling lots
- Just started having few sips of water (this is a big thing for my mom apparently!)
- Sleeping well when I feel like it
- Mostly smiling
- Eating well, eventhough I still am having 3 vanilla milkshakes a day (enjoying that because apparently thats going to change soon!)
- I love watching children play, rugby with my dad, shaking anything that makes a noise


Now i just want christmas holidays...

Under the influence of my nanny

All I love to do is pull my right sock off...my uncle calls me the one sock wonder...

Giving mommy a small grin

Holding my ball with two hands...this is a big thing!

I'm just learning 'if you happy and you know it' song...

Mom trying to force me to point and push the button...its such a great tune, i'll do whatever she says

I'm super flexible too...love to eat my toes...and have my morning bed play

Hospital days

ICU Stay - 'til Day 13
Katelyn had her pacemaker operation on Day 7, it was a little rushed after all that had happened and the doctor said it would have been better to have waited a week. It would have given time for the swelling and fluid around the heart to reduce. Because of that, they struggled a bit to get the pacemaker leads in the right spot. Because of the compressions they had to do, her sternum had moved slightly, so she was opened up fully and it was all 'sewed' back together again. She was back on the ventilator for a day and a half. Then things started to progress relatively quickly, her drains, lines, tubes etc started to come out and she started looking more and more normal. She hardly slept a wink in ICU...eventually the nurses turned her bed around and let her watch the TV 24hours a day! I held her a few times in ICU, nerve-racking but special moments. 

Moving on and out

Moving out of ICU was never something I was looking forward to. I know what life in the ward is like and was not looking forward to it, but by the time the doctors started talking about it, I was desperate to get there. I knew it was one step closer to home. It had to be done.
She was OK in the ward, very up and down. Very tired and weak. Her scar doesn't look great, its not as neat and clean as her scar from previous surgery and a few spots they want to watch closely. We're still really adjusting to how to hold her and the pacemaker. Its much bigger than you would expect (of you like us and have no idea about these things), and sticks out very distinctly just below her chest bone. Unfortunately because of the drains that were in, they weren't able to put it under the ribs like they often do, going to take-us a while to get used to looking at it!

Praise God I was only in the ward for two nights. Felt like an eternity, but I pushed the doc a bit to get out of there as soon as the significant milestones were met. Eating, drinking and her kidneys were working better.
So after two weeks in ICU and two days in the ward we headed home. After all that had happened, what a miracle.

Day after the main repair operation

Swollen on Day 2

Day 4 - come off ventilator, very miserable, Dad trying to help comfort me

Back onto Ventilator after pacemaker operation - temporary pacemaker (on right) still plugged in and switched on

Finally mom gets her first cuddle...pipes and all

  

One of my 10minute sleeps in ICU

  

Dads first hold...

  

Smiling - have charmed all the ICU staff, they all want to take me home, but I have to go to the ward

In the ward and ready to leave

Day 1 - 4 post op

Wednesday - Saturday (Day 1 - Day 4)

Katelyn has been doing relatively well. Her progress has been slow, but there have been no major setbacks which is always something to be grateful for. She had started becoming more awake and aware after 2 days of being heavily sedated and drugged up. She wasn't the happiest in the world, and having her hands tied down (to stop her from pulling out the ventilator, 4 drains and tube in her nose, lines etc!) really was frustrating for her and very frustrating to watch. They were hoping to get her off the ventilator on friday, but for some reason they didnt feel she was ready for it so waited until saturday. She struggled with breathing after it came off, and luckily our incredible nurse worked hard on her to keep her breathing clear and to help her out as much as possible. The nurse also kept her hands bandaged up, but allowed them to move around, so she could at least move her arms but not really pull anything out.

When life stands-still

I don’t really want to recall the experience in detail, or maybe I’m not ready to yet, but the details are not important. For a moment on Saturday night just before we left, Katelyn’s heart stopped. We were there. We were asked to leave as they started chest compressions on her little body, right over her surgery cut. A minute later (not that I had any idea of timing, but it felt like a lifetime) she was fine, besides incredibly sore from the ‘clinical’ effects, and of course from numerous hard compressions on an incredibly tender area. I don’t think one can ever explain what its like to witness and believe for a moment that it’s all over - besides feeling like my entire life was over. In that moment, all we could do was pray, though we had no words to say.

The details around it were unfortunate, it was really a ‘technical glitch’ and the doctors and nurses know and admitted it. Most importantly Katelyn is fine and they assure us that there are no implications for her.

It really shook me. It reminded me of how incredibly fragile life is, how we can become so casual and take so much for-granted. It reminded me that God was in control and the only one that we can turn to in times of distress. I cannot imagine how empty I would feel if I didn’t have that to hold onto.

I love her more than ever.

** Wed 31 August - She’s had her pacemaker surgery and is back on a ventilator – hopefully will get removed today. Praying for rapid recovery after this last hurdle is overcome!**

The Operation

After checking into hospital on Tuesday 23rd, we sat around for 6 hours until Katelyn went in for the Cardiac Catheterisation. I took her into the Theatre, where he gassed her to sleep(and she screamed and screamed) and then I lay her on the slab. She is already a floppy baby, but wow, she become like a dead doll within seconds in my arms.

She was delivered back to us in the ward,seriously miserable. The anaesthetist told us we could give her milk (considering she hasn't consumed anything for 12hours!). She devoured it.

For the next 2.5 hours she was totally miserable, vomiting from the milk (the nurses then said you not meant to give milk-ahhhh doctors!). When she eventually settled down, and the doctors had done their pre-surgery rounds, we headed to bed. What an angel, she slept so well when she was finally down. I couldn't sleep, racing mind.

Woken at 4:50 (madness!!!) for sterile bath, sister made Katelyn cry LOTS doing horrible unnecessary things, but after that she had her pre-med and became a cute little sleeping child.

Simon arrived at 6:30am, and 5minutes later the theatre nurses came up to get her. Simon carried her down, and we sat in the Theatre waiting area together praying for her, the doctors, the surgery and everything possible...then he had to hand her over.

After we had a few hours to catch-up on sleep(me!)and get to gym(Simon), we waited for another 2hours for her to come out of surgery. After 6 hours, she came out and we had a chat with the surgeon...all a little overwhelming, but the summary looks something like this:

- It was a complicated operation.

- Good closure of the holes and she is happy with them considering they were so big

- The valve was incredibly 'deformed' and a floating valve, she did the best she could with it and seems to be happy with the result

- Post-surgery her heart hasn't got a steady rhythm,so is on pacemaker for now and will see if it regulates itself,else she'll need a pacemaker which will be put in within a week or so

- (Katelyn's extra complication is an obstruction around the aorta outflow tract). The short version of the 'obstruction' is that she removed a small bit of tissue which seemed to help a little bit, but she's being very guarded of how the heart is going to respond. She did notice it made a difference when she removed the tissue, but she says it'll have to be something we monitor closely going forward.

**But for now we just sit in ICU watching our little one sleep and slowly wake, struggling with her hands tied down, and I can only imagine desperately wanting to rip out the million tubes all over her. **

God is ever faithful.
Sent via my BlackBerry from Vodacom - let your email find you!

17 months(in 1 day!) and a repaired heart!!

We made it. We have literally been waiting for this for months and months. Katelyn had her open heart surgery today. I'll spare the outcome details for another post, but its been repaired. It's a big moment.

The next short stage of our lives will be centred around Katelyn's recovery. I'm trusting God to write a miracle story, not to be defined by any previous experience. I'm ready to be by her side and asking God for the grace to be all I can be to her.

Hospital time is really all-consuming. Its not my favourite place, but for a short period of time your world is small and it brings you in touch with a diverse group of people. I'm overly grateful that I live down the road and am not thousands of miles from home like so many here but mostly,that our case is 'simple'. There are so many kids with so many really complicated heart-problems. We have no idea.

So, here's to a new chapter - 17 months and a repaired heart!

This time next week

This time next week I'll be in theatre...but for now its time to swing and have fun!

Why they said 'Yes'

We had our cardiologist appointment two weeks ago - the one we've been waiting for for 6 months! We were feeling pretty anxious about the appointment, mostly because of what we may find about the 'complication' that the cardiologist had been concerned about. 

Anyway, he didnt do a detailed scan (phew...saved us some cash!) - he only checked up on the complication and checked her out. He was thrilled that she's looking so healthy and had 'doubled-in-size' since January. He didnt give us too much other feedback, which we expected and promised to get back to us the following week once he'd chatted to the Surgeon. 

After a painful 5 days of waiting...he phoned. Surgeon's feedback " There's no point in delaying it any longer". YAY! So we had a date scheduled, 25 August 2011. Catheterisation scheduled for the 23 August, and then admitted on the afternoon of the 24th to prepare for the morning. Its a relief to have it scheduled, I feel ready for it, trusting God for it all.

Ultimately, this is why they said 'Yes, now...'

the nice bulging arms...

 that pot belly...

 round all over

 loving my fattening milkshake...

so much stronger!

**the complication remains a concern for him (an obstruction of the aorta), but he is hoping that the repair of the hole will indirectly fix it...so holding thumbs**

16 months

16 months! Can't believe it. 

She's started SIGNING!!!!!!!!!! She's now doing the daddy and mommy sign - wow, a big improvement since this post  on how we were so close yet so far. Its still very much work in progress, she can copy the two signs pretty well, but now we've got to work on her grasping the full meaning of the word with the action. So now for more parental discipline in continuing to add more signs (I've been so slow on this one!) and be consistent. 

She's still only sitting. Half attempting to bring her legs up beneath her, but her shoulder girdle strength and arms are just not quite there to help her along. But when she's put in 'all fours' position, she can last a while now if she gets to concentrate on something. She is however much more stable sitting up, and is doing great with reaching and grasping objects around her. 


Her verbal / social / communication skills are coming on nicely. She's generally very chatty, aware, interactive - loves to watch birds, kids, anything moving around her. 


BUT...the most incredible thing, is how she's becoming a little podge pie! How it took us 15months of struggling, and all of a sudden in one month her cheeks are bulging, her arms fattening up nicely and her tummy a seriously cute little pot-belly! Hoping it's all a good thing for her up-coming heart check-up. 


Here some recent pics of her activities (and those chubby cheeks!):

Playing with my friend Charlie...

At the beach with mom...she forgot my hat, so I had to use this one

I love playing with my shadow, moving my arms up and down and watching it move!

Playing in the morning sun on our weekend away

Playtime, so mom and dad could look at the view

They say my cheeks are getting round

and even rounder a few days later...

Welcoming the guests

laughing at dad

Ready for the weekend

Treating ourselves to a long weekend after a very long 8 weeks...

Sent via my BlackBerry from Vodacom - let your email find you!

One Year Ago

Dear Katelyn,

One year ago, I left you in the doctors arms and had to walk away from a hysterical you. The next time I saw you, machines were keeping you alive. A year later, we're one heart operation down and hopefully just one more to go.

On that hospital bed, 3 months old, 4.2kg's...today, you're busting through at 8.1kg's-you go girl! You've muscled up-sitting so beautifully, getting so good at sign language, you love people and your smile and excitement is contagious and you're just an incredible delight to your Daddy and I and many others.

So, as I think back to this significant time a year ago, its hard to forget sitting in ICU and the ward with you and to not to dread the operation that lies ahead but I can't ignore where we are now, praise God for it and we commend you. You're an incredible fighter, things don't come easily to you, you have been through so much and very rarely complain - you just carry on surprising me...everyday.

I know that God has His perfect timing for your next operation, so until then...enjoy those vanilla milkshakes that help you get fat [ cos promoting getting fat won't last forever - and it's costing me a fortune :) ], and here's to getting closer to crawling, signing and so much more!

I love you, 
Mom

Tonsillitis, German Measles...next?

What a week...

...rewind...

Dad had just started getting better (after 3weeks) towards the end of last week. Then mom felt something coming on, by saturday night Daughters temperature was high, sunday night even higher...doctor on monday = Tonsillitis - antibiotic required.

Mom coughs all night. Tuesday,Dad moves to spare room for the week. By wednesday evening,a rash appears on Daughter's stomach-doc not worried, Thursday she's miserable the entire day, Friday doc diagnoses-German Measles.

So, a weekend in for us.

Poor little body!! She's still so cute though!

I will crawl

Starting to get used to what being on all fours feels like...a long way to go, but so much progress already made!

The first step is the challenge

Simon's grandfather passed away on the 18 May 2011. 9 days later, his courageous wife followed him. 2 grandparents lost in such a short space of time. Its been tough and my incredible husband's world has changed.

I'm so grateful for having had the opportunity to assist the family in helping arrange events,etc. Without that, I don't believe I would have spent nearly as much time thinking and mulling over whats happened, who they were, what now and whats important.

I've been thinking - very muddled thoughts - about how life is about God, family, people, going beyond your world and getting out into the world of others. They were involved - in society, people's lives and incredibly devoted to family. I have so much more I could say about them...but don't want to write 5 pages!

Once everything had settled and all the memorials were done, I was looking forward to some timeout. Selfish timeout. Ironic after what I've just said, I know. Then I went to church...

and again...

Reminded of how life is about God, people, getting involved in the world...all together, not in separate boxes.

With all this at the back of my mind, Katelyn got sick. Fevers, drugs, appointments, urine bags, medicine...all thrown into the mix in my head. 

So, as the next thing is thrown into the mix, its so easy to get distracted. Either get so absorbed into my world, sort my world out, stay in my world, get ontop of everything...OR...to do the best I can to keep my world orderly while allowing God to change me and open my eyes to the opportunities to do life His way. 

Easier said than done.

Now its about taking the step beyond whats comfortable and living out those convictions...

Signing...I know she can

Some days I feel like the past 5.5 months of signing has just not been worth it. When everyday you are trying your best to sign the few words that we have signs for, daily, for months...and STILL no response...it’s so easy to become despondent.

I believe in it very strongly, and I so look forward to the day when I can communicate with my child before she can communicate verbally. At least she **will be able** to tell me when she’s hungry, thirsty, tired etc. That’s what I hold on to.

She isn’t signing yet. BUT I have faith it will come soon. Firstly, because she’s clapping and waving and is starting to comprehend her hands and what she can do with them, and how she can copy people. It’s a good start. But secondly, on two very very random occasions in the past few weeks, we’ve seen her pat her tummy a while after one of us have been saying ‘mommy’ (and the mommy sign is a pat on your chest) – I’ll take the tummy as chest any day J  I know she’s beginning to absorb so much more. Whether its related or not, the fact that I’ve seen her pat her tummy makes me know she’s at least getting another action in!

For those of you who’ve been there, I think you’ll understand the incredible reward it is when your child starts to sign. I’m only beginning to feel the reward…and although I don’t feel it fully yet at all…just the hope and faith fills my heart! I can’t wait for her to sign mommy – even if its daddy ;) and even if that’s the only one she signs for months!

Heading into the potential space of a looming operation, I want to step out in faith and pray that she’s able to sign the basics before operation time (still no news on that – besides a checkup in August). It will be wonderful if she can at least sign thirsty / tired / hungry while in hospital. Though I hope that it doesn’t all disappear from her memory when her hands are tied down – but I’m trusting God that as soon as her hands are tested and given some freedom that they behave and don’t pull out the million pipes, and that she’ll be able to communicate. Always good to have high expectations I’ve been told :)

 

But that aside…I ask God for the discipline of consistency, consistency, consistency…as that’s what this is all about.

My Challenge

Some days I am really overwhelmed...with everything. I know I should be doing so many different things with Katelyn, and when I find myself not focusing on her like I should be (I'm not expecting to be focused on her every second, but at least every second or third!) I get really frustrated. It doesn't take alot to get the games and exercises done, but it does require intentionality a couple of times a day. So I'm going to be putting together a routine for myself, to squeeze in those 15min sessions a few times a day in a way that hopefully one day becomes natural. I know this will be a fluid process and I'll figure out along the way what works best for me, but I have to start somewhere. So watch this space...

Praise God that on those days when I feel like its too much to take on, I look at the 7.5kg bundle on my lap, or rolling around on the floor next to me and am reminded of not only how adorable she is, but what a special gift she's been to us. We're being changed because of her.

Here's just some of that cuteness...

Easter Milestones

We had a wonderful week break over Easter and escaped to honestly one of the most beautiful spots in the world. Hosting special friends; family time; rain, sun, wind...

A week before we left, Katelyn had started showing signs of actually being strong enough to sit on her own, but wouldn't last longer than 10seconds or so, but I knew it was FINALLY starting to come. While we were away, she literally became a sitting star! I think having another little toddler around helped - as kept her concentrating (she just loves to watch other kids!) and sitting for minutes and minutes. Sitting changes everything. Your perspective, allows you to follow everything happening around you, suddenly makes you want to interact with everything...and thats just what I've found. She's a totally different person. It's an incredible thing to witness and watch, someone who for a whole year has been lying on the floor struggling to push herself up and eventually rolling over, to someone who's sitting (and straight up I must add **so proud**) and taking in everything. Its another reminder to me, of the incredible the reward is of reaching a milestone...the first of many.