I feel like we have been celebrating Chistmas for a long time this year! The Adelaide Christmas pageant was held on a stinking hot 42 degree day on November 14th and it has been festive ever since. That was six weeks ago!
So, what have we done to celebrate? What have been the highlights of this time?
The girls' Nativity play at school was a very special highlight.
Last Saturday night also makes the grade. We had my Mum and Dad, sisters Martine and Sheriden, their husbands and Sheriden's children over for a swim and pizza dinner. It was a good chance for Matt to catch up with the crew before he went away to miss Christmas (a painful issue...!). By the time everyone left it was about 8pm and close to nightfall. Daylight saving here means it doesn't get dark until after 8:30pm so there were few times I felt inclined toward keeping the kids up late enough to see any of the night time Christmas lights. Because it was already late(ish) we seized the moment and spontaneously decided to veiw the Christmas decorations hung by the residents of 9th Avenue, St. Peters. We loaded the kids up for the adventure and had a magical time wandering the avenue and hearing the kids gasp as they went from house to house. Asha commented that now it really felt like Christmas and that the whole experience was "like a dream come true!". Out of the mouths of babes.... We had the added joy, when we returned home, of showing the kids our tree all lit up and then taking them outside to see God's wonder in the sky - STARS! So many of them in our clear, dark sky. What a marvelous display.
Next on the list is a glorious family day we spent at McLaren Vale - arguably our favourite place on Earth. The kids played hide and seek in the gardens of Coriole Winery, we visited the Willunga bakery for doughnuts and then indulged our small family members in a visit to the beach at Pt. Willunga.
Wednesday, December 23 was the Tamms family Christmas lunch which was relaxed and lovely. We tried to have a real "Christmas Day" early, but it isn't really the same. We all enjoyed receiving our new nighties and pj's and paraded around in them over our fruit salad breakfast (plus icecream for the kids). Yum! Apart from the presents, the highlight for the girls was sifting through the icecream pudding to find the wrapped coins. The pudding was then abandoned (maybe next year I should just wrap up some coins and put them out for dessert!).
We sadly dropped off Matt at work on the morning of Christmas eve and then headed for IKEA to the kids playroom (ie quiet time for mummy) with a hotdog chaser for lunch. Home for naps (everyone) before heading to the church Carols by Candlelight where the girls sang in the childrens choir (gorgeous!), the kids had their faces painted, we all froze and arrived home ready to fall into bed at 10pm.
Christmas morning started slowly for us. The girls marvelled over their stockings and anxiously waited for Ethan to wake up (8am!!!). We unwrapped gifts from Luise and Graham. The kids had a breakfast of Freddos and hot chocolate and watched TV until Mia and Grandad arrived. I busied myself with preparing a yummy Nigella watermelon salad and putting the finishing touches on our dessert of white chocolate cheesecake with berries. Presents with Mia nd Grandad. Catching a few snails and a fly in the garden (Ethan and Grandad) and then off to Aunty Sheriden and Uncle Grant's house for the feast. The scene was perfect and it was lovely to be with family (and to at last have some adult company for Christmas!). The cousins enjoyed each others' company and played well. We shared communion as a family and it was special to hear Dad read to us from Isaiah where it talks about the coming Saviour - the reason for our celebration. It was a beautiful and drama free day and we arrived home at about 5:15pm ready for a bath, story time (new books!) and bed. We were blessed and the kids were spoilt. But.......
We missed Matt. I missed Matt. While philosophically we can accept that it is only fair to miss a Christmas after having spent the past 5 with us, the reality is that we weren't all together. Daddy was missing. And that was very, very difficult.
So, here we are. Boxing day. The kids are playing surprisingly well together. We are not going anywhere and there is noone coming over. I am exhausted. Today we will be hermits and might just eat toast for dinner. We are all still in our new nighties and pyjama's. Peace.
Saturday, December 26, 2009
Thursday, November 26, 2009
Going, going.....gone
A number of things have been removed from our lives in the past month. The first to go were Shae's two front bottom teeth. They both fell out within 5 days of each other - the second one while she was in the pool so the tooth fairy must have gotten wet that night!
Shae's missing teeth
The kids look on as the guys begin the job of removing the berry tree
Ethan, Asha and Shae claim their trees
The Belles off to the Ball
The girls performed their Nativity play for us today. It was very special. Asha was a talking sheep who delivered her lines with clarity and intonation. Shae was, of course, an angel. It all happened perfectly - there were lovely songs, Joseph picked his nose and there was the obligatory school play feedback through the sound system. The reception teachers had also put together a slide presentation of activities the kids have done throughout the year and played tear jerking music. Then the teachers prayed a prayer of thanksgiving for the year that was and for all the kids as they move on to year one.....and for the families who are leaving St. Johns.
Well, that was about all I could handle. I hadn't brought tissues (though I'd been warned I might need them). And all of a sudden it was real. We are leaving. My girls have not been assigned to Mrs. Cosh or Ms. Sunman's class. We are heading back to Hong Kong again - again. But I will save my reflections on our time here for another post.
In the meantime I think I might need to find a partridge for those pear trees....
Tuesday, October 13, 2009
The Things We Do For Love
Last week I found myself in the middle of a panic attack.
We have been praying for protection for our family from swine flu all winter. And God has most awesomely provided that protection. I understand that swine flu is "just another flu, like seasonal flu", but to us it is more than that. We fall into the category of having "underlying health conditions". I say "we" even though I know you know I mean Shae. But Shae is part of "us" - all of us.
For this reason our family has been and will continue to be vaccinated against anything we can be to avoid unnecessarily exposing Shae to an illness which could tax her amazing body beyond its capacity. This includes the new swine flu vaccination (once it has received paediatric approval). We do it because we love her and because she is important to us. We do it because the alternatives are unacceptable to us.
So, when I received a "scary" email warning about how potentially dangerous the new American swine flu vaccination is (just a few days after Matt had had his Australian shot), I panicked. I experienced fear to my core. It is a helpless and lonely place to be and it can cripple you to a point at which you are no longer able to function. Now, fear is not something that God has in His plan for us and He was quick to bring to mind who I should talk to about this and to restore my peace (thank You, Lord). He reminded me that He is in control and cares deeply about all these things and that His purposes are sovereign.
This event caused me to think again about how careful we need to be with the choices we make - what we do, what we believe, what we read. Throughout life we are always making choices - weighing up the risks and the benefits. Sometimes they are minor decisions with limited impact on us and those around us. Sometimes they are much bigger. It is certainly much more simple to make those decisions in which love is not a key player.
Love make things trickier.
Sometimes love can lead to irrational choices, crazy behaviour, risky decisions - if they are not weighed and measured and wrestled with. And then sometimes it can lead to selfless acts that can change someone else's life for eternity....... like dying on a cross.
So, because we love, we get vaccinated and weigh the risks. Given the choice, what would you do?
We have been praying for protection for our family from swine flu all winter. And God has most awesomely provided that protection. I understand that swine flu is "just another flu, like seasonal flu", but to us it is more than that. We fall into the category of having "underlying health conditions". I say "we" even though I know you know I mean Shae. But Shae is part of "us" - all of us.
For this reason our family has been and will continue to be vaccinated against anything we can be to avoid unnecessarily exposing Shae to an illness which could tax her amazing body beyond its capacity. This includes the new swine flu vaccination (once it has received paediatric approval). We do it because we love her and because she is important to us. We do it because the alternatives are unacceptable to us.
So, when I received a "scary" email warning about how potentially dangerous the new American swine flu vaccination is (just a few days after Matt had had his Australian shot), I panicked. I experienced fear to my core. It is a helpless and lonely place to be and it can cripple you to a point at which you are no longer able to function. Now, fear is not something that God has in His plan for us and He was quick to bring to mind who I should talk to about this and to restore my peace (thank You, Lord). He reminded me that He is in control and cares deeply about all these things and that His purposes are sovereign.
This event caused me to think again about how careful we need to be with the choices we make - what we do, what we believe, what we read. Throughout life we are always making choices - weighing up the risks and the benefits. Sometimes they are minor decisions with limited impact on us and those around us. Sometimes they are much bigger. It is certainly much more simple to make those decisions in which love is not a key player.
Love make things trickier.
Sometimes love can lead to irrational choices, crazy behaviour, risky decisions - if they are not weighed and measured and wrestled with. And then sometimes it can lead to selfless acts that can change someone else's life for eternity....... like dying on a cross.
So, because we love, we get vaccinated and weigh the risks. Given the choice, what would you do?
Tuesday, September 8, 2009
Adelaide's Finest
We have just enjoyed a lovely long family weekend taking in some of Adelaide's unique features and having lots of fun together in the process.
It started on Friday, which was student free day at school and also the first day of the Royal Adelaide Show. Now, I had planned on perhaps avoiding the Show again this year on the premise that our children have never been to the Show before, so they didn't know what they were missing. Silly me, however, had failed to take into account the important fact that 5-6 year olds are very cluey and they actually talk to each other at school. So, the girls came home from school on Thursday with in-depth information about this Royal Adelaide Show and all the wonders it had to offer and armed with the knowledge that it would be happening tomorrow!
We were blessed to receive some entry tickets for Matt and I, so we geared up and bit the bullet. And I'm so glad we did! I have very fond memories of attending the Show as a child. When we lived in Perth we went every year - my Mum's dad and brother owned various show rides so we enjoyed the benefits of knowing the "Showies" - rides, carnival games, little plastic fairy dolls on sticks etc. The only expenses were the food and the showbags (which then were relatively reasonable - now, I think there are probably families who save up all year to buy the hundreds of bags of "stuff" they cart out the gates at the end of their day). When we moved to Adelaide the rules changed a bit (we didn't know the Showies in Adelaide), so we went every second year and there were certain limits on rides and showbags, but we always walked away feeling very indulged and satisfyingly exhausted. We had really fun family times at the Show.
Anyway, having visited a theme-park or two, I had the strategy for our day planned. I had enough food packed to feed us all happily for the entire day (including chips and cupcakes so there were some treats involved). Our first activity for the day was a visit to the showbag hall where we found the Bertie Beetle stall and purchased a blue bag for each of the kids. Right, they had their lollies and were ready to play (big tick for me - showbag hall done when it was still quiet with no nagging for goodie bags having taken place). After a wander through the Lifestyle Pavilion where we sampled various cooked treats and picked up a Woolies Fresh Food Kids free goodie bag for each of the kids, our next stop was the kids carnival which housed the inevitable rides and carnival games. Now, the kids had been prepped that they could choose one ride to enjoy here (they are used to HK Disneyland where they can hop on everything as many times as they'd like). However, when they saw the games and all the glittering (cheap, tacky, plasticy) prizes on display, they decided to try their luck at one of these instead. Asha had a go at fishing for a noodle box and won a blue stuffed cow. Shae and Ethan opted for a variation on the clown game where you feed 5 ping-pong balls into the mouth of the clown (or in their case a mermaid and a penguin) and win a prize from the section marked with the number bearing the sum total of the balls played according to the channels they land in. Ethan won a plastic toy truck (with a picture of some vegetables and a Chinese baby on the side) and Shae picked up a Barbie telephone. And that was side-show alley taken care of - ANOTHER big tick for me! And three very happy campers.
Next stop was in the horticulture pavilion where we were treated to a fashion parade entitled Wearable Blooms. It was an interesting concept with some lovely intricate designs and some rather unexpected bawdy antics. Like I said, interesting. After that we glided past the cake displays to see if our friend Sue had taken out another prize this year - unfortunately not. And then we began to wander toward the animal pavilions. Fortunately for us Asha was side-tracked by a performer who was setting up his act on a stage we were passing and she asked if we could watch. Sure! We had no real agenda, so we set up camp. And for the next half an hour we were treated to the BEST juggling and street performance act we've ever seen. All we can say is "Go Mr. Spin! We love you!".
As our day drew to a close we watched some V8 utes driving in formation (that wasn't anyone's highlight and we didn't stay long), visited the farmyard nursery, saw some show dogs, sampled lots of different types of salami and olives and then made the trek back to the car. Picked up pizza on the way home and thus ended a fun and surprisingly low-stress day. Minimal whining, no melt-downs (by us or kids) and lots of joy.
Saturday morning was lazy (bliss!) and then in the afternoon we visited the Railway Museum with our friends Brenton and Hayley. Brenton in a train fanatic and made the entire experience a lot of fun and very memorable (by fanatic I mean - this is where Brenton held his 30th birthday celebration - he just LOVES trains!). We spent two hours jumping on and off old railway carriages, exploring engine rooms, riding the miniature Thomas train and enjoying the thrill of seeing Brenton in his element! It wouldn't have been nearly as much fun without him there.
Shae, Ethan and Asha with Brenton and Hayley
(and one of the many train engines at the Railway Museum)
Sunday was Father's Day and we enjoyed a 'low-key' lunch with Matt's parents at our house. It was simple and relaxed. I wish that I could've given my Dad a hug and kiss and some bbq steak on the day too, but he and Mum are currently enjoying some time overseas - so, across the miles, Dad "I love you and thanks". Adequate words would take a whole post of their own, so I will save that for another time....
Monday, August 17, 2009
Losing It
As per usual much has happened since my last post:
Matt has had another birthday.
Matt with a celebratory "Birthday Platter"
We visited Sarah and her girls in Brisbane, and met Ellie (our God-daughter) for the first time!
Me with Sah and Ellie by the beach
Shae has starred in New Idea magazine (in a short write-up about Ronald McDonald House in Melbourne).
The event which earned Shae "celebrity status"!
The boys and their toys
And Asha has had a visit from the Tooth Fairy - twice!
Asha just after losing her first tooth!
Ash discovered her first loose tooth when we were in Brisbane during the school holidays and last Wednesday night (August 12 - 5 weeks later) it finally fell out. Unfortunately, Daddy missed the event, but the Tooth Fairy obligingly granted the request written by Asha and left the tooth for him to see when he came home from his trip. The Tooth Fairy had her work cut out for her last night when she came to collect Asha's second tooth, which was unfortunately rinsed down the basin drain with the toothpaste after brushing her teeth yesterday morning! It's lucky she is so tiny and can fit through the plughole....
Sunday, June 28, 2009
Princess for a Day
Disney came to town! Princesses on Ice. And Disney-holics that we are (and raising our children to be) we splurged so the princesses in our family could attend. It was a mummy and daughter affair to remember.
Me and my Princesses
The entire day was such a delight!
The show in itself would have been enough to get our wildest wishes flowing, but there was icing on the cake as well. As a prequel to the event we were invited to attend a Princess Luncheon and Playdate at Jane's palace (now officially crowned Queen of the Princesses). Princess Claudia (Jane's daughter) hosted Princesses Asha, Shae, Zara and Emma (all in the same class at school) for a selection of princess themed activities, lunch and, of course, princess cupcakes. Meanwhile the princess Mums were also hosted for a beautiful lunch and lots of photo taking!
The Scene
The Princesses
The Mums
Princesses at Play
It was such a fantastic day - as you can tell, because it inspired me to get blogging again! A total escape from reality and into fantasy land. And goodness knows we all want to feel like a princess once in a while. Thanks Jane!
Thursday, May 28, 2009
When I grow up
Last night at the dinner table our family conversation turned to career and life decisions.
Asha informed us that she would like to be a hairdresser and live here in Adelaide. I'm sure that if she does end up pursuing this career path she will make a lot of women feel like the princesses we all are inside. A noble cause indeed.
During our time in Melbourne Shae decided (after having watched Father of the Bride Part II quite a few times) that she would like to be an obstetrician. She loves babies and has always said that she would like to be a mum when she grows up. I think the labour scenes in the movie were enough to make her rethink her position and rather help other mothers get their babies out. I have told her that if she wants to, she could actually be both. She would also like to live in Hong Kong with Big Ethan (our friends, the Hunter's, son) as her husband. She said over dinner last night that she would visit us should we be living in Adelaide at the time. Today Shae asked me about my earrings and whether it hurt to have my ears pierced (to which I truthfully replied "Yes!") and she asked if she had to get that done. I told her that she might want to when she gets older, so she thought about that for a little while and then said "I don't want to have earrings when I'm an obstetrician"! She has herself all figured out then.
And then we came to Ethan. We asked him "What do you want to be when you grow up?" and he said "A pirate!". We all laughed and Asha said "No, do you mean a PILOT? You know, and fly the plane like Daddy?" At this point Ethan was the one who laughed and he said "NAH. I want to be a pirate!!!". Case closed.
Asha informed us that she would like to be a hairdresser and live here in Adelaide. I'm sure that if she does end up pursuing this career path she will make a lot of women feel like the princesses we all are inside. A noble cause indeed.
During our time in Melbourne Shae decided (after having watched Father of the Bride Part II quite a few times) that she would like to be an obstetrician. She loves babies and has always said that she would like to be a mum when she grows up. I think the labour scenes in the movie were enough to make her rethink her position and rather help other mothers get their babies out. I have told her that if she wants to, she could actually be both. She would also like to live in Hong Kong with Big Ethan (our friends, the Hunter's, son) as her husband. She said over dinner last night that she would visit us should we be living in Adelaide at the time. Today Shae asked me about my earrings and whether it hurt to have my ears pierced (to which I truthfully replied "Yes!") and she asked if she had to get that done. I told her that she might want to when she gets older, so she thought about that for a little while and then said "I don't want to have earrings when I'm an obstetrician"! She has herself all figured out then.
And then we came to Ethan. We asked him "What do you want to be when you grow up?" and he said "A pirate!". We all laughed and Asha said "No, do you mean a PILOT? You know, and fly the plane like Daddy?" At this point Ethan was the one who laughed and he said "NAH. I want to be a pirate!!!". Case closed.
Sunday, May 24, 2009
Memory Making
I have decided that Memory Lane is in my top ten list of favourite destinations.
I'm not sure what prompted the thought, but today on the way to church Shae asked if we could show Ethan the video footage we have of her and Asha as sub-one year old's helping take the washing out of the machine and place it in the dryer at our apartment in Robinson Heights, Mid-Levels, Hong Kong.
And thus began a 3 1/2 hour walk down memory lane. It was the perfect way to spend a rainy Sunday afternoon. After having watched about an hour and a half of video-taped memories of the girls (which only covered from about 8 to 18 months!) Matt and I started to get guilt-pangs over how much we had recorded of the girls and how little we had of Ethan. So, Matt got to digging out the video camera tapes we have of Ethan's short life - and lo and behold there were 9 tapes!!! We watched from Ethan's birth day and quickly our guilt subsided. We had recorded a monster portion of his life too (phew!). Plenty of riveting hours of time on the playmat, in the bath, tummy time. We had a delightful afternoon of reliving first hours, first cuddles, first surgeries, first triumphs, first foods, first steps, first bike rides, first falls, first words, first books, first songs, first spots, first beds....of Disneyland and kangaroos, Grandparents' houses and kindergarten, friends, family, family-friends, Christmas plays, crawling races, elephants. Oh, it was great!
And what delighted me most was the realisation that we've only just begun with the memory making.
Take yesterday, for example - a day of memory making. We spent the late morning and early afternoon at Carrick Hill with some relatively new and precious friends (who feel like old ones already). We had brunch and sat in the garden with champagne and nibbles. We discussed life, love, dreams (and how they change), children, heartache, adventures, jokes. And all the while our beautiful children frolicked in the garden - every now and then contributing a delighted squeal to the ambiance of the day or returning to home base to refuel. It was divine.
And this is why I am a fan of Memory Lane. It highlights the best times that life has brought (not just the happiest, but also the most challenging that have resulted in immense growth) and encourages me that there are still so many more stops to add along the way.
We've only just begun with the memory making....
I'm not sure what prompted the thought, but today on the way to church Shae asked if we could show Ethan the video footage we have of her and Asha as sub-one year old's helping take the washing out of the machine and place it in the dryer at our apartment in Robinson Heights, Mid-Levels, Hong Kong.
And thus began a 3 1/2 hour walk down memory lane. It was the perfect way to spend a rainy Sunday afternoon. After having watched about an hour and a half of video-taped memories of the girls (which only covered from about 8 to 18 months!) Matt and I started to get guilt-pangs over how much we had recorded of the girls and how little we had of Ethan. So, Matt got to digging out the video camera tapes we have of Ethan's short life - and lo and behold there were 9 tapes!!! We watched from Ethan's birth day and quickly our guilt subsided. We had recorded a monster portion of his life too (phew!). Plenty of riveting hours of time on the playmat, in the bath, tummy time. We had a delightful afternoon of reliving first hours, first cuddles, first surgeries, first triumphs, first foods, first steps, first bike rides, first falls, first words, first books, first songs, first spots, first beds....of Disneyland and kangaroos, Grandparents' houses and kindergarten, friends, family, family-friends, Christmas plays, crawling races, elephants. Oh, it was great!
And what delighted me most was the realisation that we've only just begun with the memory making.
Take yesterday, for example - a day of memory making. We spent the late morning and early afternoon at Carrick Hill with some relatively new and precious friends (who feel like old ones already). We had brunch and sat in the garden with champagne and nibbles. We discussed life, love, dreams (and how they change), children, heartache, adventures, jokes. And all the while our beautiful children frolicked in the garden - every now and then contributing a delighted squeal to the ambiance of the day or returning to home base to refuel. It was divine.
And this is why I am a fan of Memory Lane. It highlights the best times that life has brought (not just the happiest, but also the most challenging that have resulted in immense growth) and encourages me that there are still so many more stops to add along the way.
We've only just begun with the memory making....
Thursday, May 21, 2009
Amazing
I know I have been silent for some time now. Silent and amazed! I have spent the past two weeks getting to know a young girl who is full of energy and wellness and life. And I am overwhelmed with gratitude.
I'm not quite sure what I expected the outcome of this surgery to be. To be totally honest, I don't think my thought processes went beyond "Take Shae to Melbourne, support her through surgery preparation and recovery, return to Adelaide and integrate slowly back into the old way of life". But that's not what has happened at all!
After Shae's first week of going to school for two half days, her cardiologist said that we could phase her back into full days - as many as she could comfortably handle. So, I was thinking of sending her on Mon Wed and Fri the following week. After all, there had been tears of separation anxiety, pain anxiety etc. on her half days. Surely three full days would be enough.
Well! You should have seen the little Energiser Bunny go!!!! After a gradual process of realising that not only did she like school, but that she could actually (for the first time) participate fully in all the physical activities engaged in there, she took to full time school like a duck to water! She went every day last week. And has been every day this week. She has engaged in PE classes that she previously spoke of with angst. She has fallen over and skinned her knees twice while engaging in phsical activities with gay abandon. I have watched her throw herself down the slide in the school playground and, feet no sooner having touched the ground at the bottom, race to climb the activity frame in order to repeat the act. Their class went on an excursion to Port Adelaide yesterday to visit the Maritime Museum, the Rail Museum and climb the lighthouse - and last night she whispered to me that she had done lots of walking and "I didn't get puffed out". Oh!!!!!
I had never realised what a difference this operation would make. How remarkable the change would be.
I feel like I am getting to know the real Shae for the very first time. She's gorgeous! And I admire her so much!
I'm not quite sure what I expected the outcome of this surgery to be. To be totally honest, I don't think my thought processes went beyond "Take Shae to Melbourne, support her through surgery preparation and recovery, return to Adelaide and integrate slowly back into the old way of life". But that's not what has happened at all!
After Shae's first week of going to school for two half days, her cardiologist said that we could phase her back into full days - as many as she could comfortably handle. So, I was thinking of sending her on Mon Wed and Fri the following week. After all, there had been tears of separation anxiety, pain anxiety etc. on her half days. Surely three full days would be enough.
Well! You should have seen the little Energiser Bunny go!!!! After a gradual process of realising that not only did she like school, but that she could actually (for the first time) participate fully in all the physical activities engaged in there, she took to full time school like a duck to water! She went every day last week. And has been every day this week. She has engaged in PE classes that she previously spoke of with angst. She has fallen over and skinned her knees twice while engaging in phsical activities with gay abandon. I have watched her throw herself down the slide in the school playground and, feet no sooner having touched the ground at the bottom, race to climb the activity frame in order to repeat the act. Their class went on an excursion to Port Adelaide yesterday to visit the Maritime Museum, the Rail Museum and climb the lighthouse - and last night she whispered to me that she had done lots of walking and "I didn't get puffed out". Oh!!!!!
I had never realised what a difference this operation would make. How remarkable the change would be.
I feel like I am getting to know the real Shae for the very first time. She's gorgeous! And I admire her so much!
Thursday, May 7, 2009
Too Cute
Well, today was another big day on the cardiac surgery/recovery calendar - Shae's first half day back at school! And it went very well. And I cannot miss taking this oportunity to say how incredibly gorgeous she and Asha look in their winter uniforms... in fact, there is not a little girl in reception that doesn't look adorable in these uniforms. Admittedly it does take an extra ten precious minutes of the morning routine just to get them dressed - but it is just so worth it!! Too cute indeed.
PS I am in the process of adding pics to the blog, so please scroll through if you are interested in seeing how far we've come!
Sunday, May 3, 2009
Shae's check-up on Friday went fantastically well!
Matt and I took a crying, feverish and pained little girl to her x-ray and review on early Friday afternoon and fully expected to re-admit her for further drainage. To my surprise, her x-ray looked better than the one she had taken on Tuesday. Being a little skeptical and thought they must have used the wrong image - but it was correct afterall. Her cardiologist was very happy with the progress and went so far as to say that she had "turned a corner" in her recovery. He is still reluctant to send her back to school, but suggested a couple of half days this week. She is, afterall, still only 4 1/2 weeks out of major open-heart surgery and flu season has begun. But we are progressing well.
We went home with a happy, cool headed and skipping little girl - a marked improvement noted right about the time we walked out of the cardiology department. We suspect perhaps she had some "white coat fever"?
We have had a divine family weekend. So wonderful that I can think of little that could have made it any better.
Praise the Lord a thousand times over....with a cherry on the top!
Matt and I took a crying, feverish and pained little girl to her x-ray and review on early Friday afternoon and fully expected to re-admit her for further drainage. To my surprise, her x-ray looked better than the one she had taken on Tuesday. Being a little skeptical and thought they must have used the wrong image - but it was correct afterall. Her cardiologist was very happy with the progress and went so far as to say that she had "turned a corner" in her recovery. He is still reluctant to send her back to school, but suggested a couple of half days this week. She is, afterall, still only 4 1/2 weeks out of major open-heart surgery and flu season has begun. But we are progressing well.
We went home with a happy, cool headed and skipping little girl - a marked improvement noted right about the time we walked out of the cardiology department. We suspect perhaps she had some "white coat fever"?
We have had a divine family weekend. So wonderful that I can think of little that could have made it any better.
Praise the Lord a thousand times over....with a cherry on the top!
Wednesday, April 29, 2009
Re-entry
Seems to me that re-entry is not my strong suit. I always used to find that when I returned to HK after time away. And now I am finding it here.
The landing was superb. We checked in for our flight to find that we were seated in Premium Economy and had access to the Lounge before boarding! I was so glad we arrived early so we could make the most of it. We celebrated our journey home with a glass of bubbles - mine being champagne and Shae's sparkling water. We did it with style!
Monday night was brilliant. Family dinner (a very big pizza!), bath time, bed time, wine time....
Tuesday morning was also great - showing off our new little pink girl to our school family. All great.
But Tuesday afternoon's checkup wasn't quite as good as I'd hoped. Don't get me wrong, in general Shae is still exceptionally good, but her x-ray and echo showed a new (small - relatively) collection of fluid in her right chest cavity. And her oxygen saturations had started to drop again. She is already on the highest fluid restrictions and doses of diuretics that they will allow, so basically all we can do is watch her and see how this progresses. As my mum pointed out, it is a real reminder of what a significant procedure Shae has undergone. That she is still healing from that, even though the wounds are already knitting themselves together into beauty spots.
I guess that the most frustrating thing about it is this - there is nothing I can or can't DO to help this situation. And that is where I must continue to lean on Christ and trust.
The good news is that even if a new drain needs to be put in, they can do it here at the WCH.
The landing was superb. We checked in for our flight to find that we were seated in Premium Economy and had access to the Lounge before boarding! I was so glad we arrived early so we could make the most of it. We celebrated our journey home with a glass of bubbles - mine being champagne and Shae's sparkling water. We did it with style!
Monday night was brilliant. Family dinner (a very big pizza!), bath time, bed time, wine time....
Tuesday morning was also great - showing off our new little pink girl to our school family. All great.
But Tuesday afternoon's checkup wasn't quite as good as I'd hoped. Don't get me wrong, in general Shae is still exceptionally good, but her x-ray and echo showed a new (small - relatively) collection of fluid in her right chest cavity. And her oxygen saturations had started to drop again. She is already on the highest fluid restrictions and doses of diuretics that they will allow, so basically all we can do is watch her and see how this progresses. As my mum pointed out, it is a real reminder of what a significant procedure Shae has undergone. That she is still healing from that, even though the wounds are already knitting themselves together into beauty spots.
I guess that the most frustrating thing about it is this - there is nothing I can or can't DO to help this situation. And that is where I must continue to lean on Christ and trust.
The good news is that even if a new drain needs to be put in, they can do it here at the WCH.
Monday, April 27, 2009
She's Got a Ticket to Ride
We have had a surprisingly great weekend.
Saturday morning's x-ray was clear and we enjoyed the afternoon at the Melbourne Museum. Quite fascinating and better than being out in the cold 15 degree day.
Yesterday we went to church with Eleanor's family and then Shae was invited to attend her birthday party at Dizzy's Castle - an indoor play centre. It was a fun and exhausting day which took us pleasantly by surprise. And to top it all off, we snuggled up and watched the dancing finale. A fantastic day. But not as good as today.....
We've been given the green light to come home!!!! This time it's for real. Our flight has just been booked and we will be back by dinner time tonight!
I could just scream for joy!!!!!
Can't wait to see all our Adelaide friends and family soon....
Some of my very good, trusted friends (and my chiropractor) have warned me that once I get back and the adrenalin stops is the time that I may "hit the wall" somewhat. I have been contemplating this and trying to prepare myself. But how do you prepare for that???? Can't really.
So, I am running headlong and joyfully toward my nervous breakdown. As prepared as is possible, and extremely excited that while I may be a basket case, at least it will be with Matt, all my kids, my own bed and my coffee machine!
Saturday morning's x-ray was clear and we enjoyed the afternoon at the Melbourne Museum. Quite fascinating and better than being out in the cold 15 degree day.
Yesterday we went to church with Eleanor's family and then Shae was invited to attend her birthday party at Dizzy's Castle - an indoor play centre. It was a fun and exhausting day which took us pleasantly by surprise. And to top it all off, we snuggled up and watched the dancing finale. A fantastic day. But not as good as today.....
We've been given the green light to come home!!!! This time it's for real. Our flight has just been booked and we will be back by dinner time tonight!
I could just scream for joy!!!!!
Can't wait to see all our Adelaide friends and family soon....
Some of my very good, trusted friends (and my chiropractor) have warned me that once I get back and the adrenalin stops is the time that I may "hit the wall" somewhat. I have been contemplating this and trying to prepare myself. But how do you prepare for that???? Can't really.
So, I am running headlong and joyfully toward my nervous breakdown. As prepared as is possible, and extremely excited that while I may be a basket case, at least it will be with Matt, all my kids, my own bed and my coffee machine!
Friday, April 24, 2009
I have run out of face cleansing wipes.
Normally I am a plain old sorbolene and water girl (low maintenance in all it's finest), but for this trip I thought I would keep things simple and buy some Nivea facial cleansing wipes. Not knowing when I would have ready access to face washers etc. There were 25 wipes in the pack, which I thought would be plenty. Two nights ago I used the last one, which means we have now had 26 nights away from home.
And I am back to sorbolene and water, because hopefully now we will be spending our last nights here in the same place.
Shae enjoyed a long warm shower last night. Her second one in over three weeks (adding it all up, she still hasn't used her 4 minutes per shower quota of water - just in case you were wondering exactly how long this shower was...!).
We have taken this morning slowly, after a wonderful and undisturbed sleep.
It will be a cold, rainy and blustery weekend here in Melbourne. Perfect for playing board games, reading books, resting, maybe even getting on with some sight words.
I feel so tired. And so peaceful.
Normally I am a plain old sorbolene and water girl (low maintenance in all it's finest), but for this trip I thought I would keep things simple and buy some Nivea facial cleansing wipes. Not knowing when I would have ready access to face washers etc. There were 25 wipes in the pack, which I thought would be plenty. Two nights ago I used the last one, which means we have now had 26 nights away from home.
And I am back to sorbolene and water, because hopefully now we will be spending our last nights here in the same place.
Shae enjoyed a long warm shower last night. Her second one in over three weeks (adding it all up, she still hasn't used her 4 minutes per shower quota of water - just in case you were wondering exactly how long this shower was...!).
We have taken this morning slowly, after a wonderful and undisturbed sleep.
It will be a cold, rainy and blustery weekend here in Melbourne. Perfect for playing board games, reading books, resting, maybe even getting on with some sight words.
I feel so tired. And so peaceful.
Thursday, April 23, 2009
Take 2
Shae's fluid drainage has been zero for about 36 hours now. She had a chest x-ray this morning and the drain was removed a few hours ago! Subsequent x-ray looked good so we're going back to accommodation now and in for another x-ray and review on Saturday.
Rejoice!
We'll try to get it right this time.....
Rejoice!
We'll try to get it right this time.....
Dancing Distraction
So You Think You Can Dance seems to have been a theme for this part of our lives and last night the theme continued.
Some of the dancers from judge Jason Coleman's Ministry of Dance school came to Ronald McDonald House to perform and I was given permission to whisk Shae out of hospital for an hour to go and watch. Unbeknown to us, Jason Coleman also came along and met with kids and families using the house. Though I am not usually one to get particularly excited about "celebrities", it was a really fun distraction and gave us a thrill. Shae was probably most excited about the tattoos the dancers gave out after the performance and discussing "hip hop" with one of the female dancers.
Some of the dancers from judge Jason Coleman's Ministry of Dance school came to Ronald McDonald House to perform and I was given permission to whisk Shae out of hospital for an hour to go and watch. Unbeknown to us, Jason Coleman also came along and met with kids and families using the house. Though I am not usually one to get particularly excited about "celebrities", it was a really fun distraction and gave us a thrill. Shae was probably most excited about the tattoos the dancers gave out after the performance and discussing "hip hop" with one of the female dancers.
Monday, April 20, 2009
Eleanor
Yesterday afternoon Shae's newfound friend, Eleanor, came to visit her. Shae and Eleanor met in a playground near the hospital 2 days before her surgery and since then they have had a lovely time getting to know each other.
Eleanor and her family live nearby, and the night before we thought we were heading back to Adelaide we went to Eleanor's house for a play and dinner. It was lovely. And very normal feeling. And the roasted pumpkin risotto with a glass of white wine were obviously just what I needed in preparation for the weekend we just went through!
They are a blessing to us in a city where we don't have family or friends. And ironically, we have been a blessing to them too as they just moved here from London three months ago. And Eleanor's Grandma lives near us in Adelaide, so we will be able to see them again when they visit in the future!
Though it looked like Shae's fluid drainage was decreasing, the lower fluid levels were due to a kink in her drain causing it to block. Fortunately it is now "unkinked", but the fluid keeps draining out.
We are pressing on, but it is difficult now that the finish line seems to have disappeared. Neither of us are sleeping very well. Today we were able to speak with Shae's care manager and rearrange her overnight care schedule which may hopefully mean fewer disturbances through the night. Strangely, the best place for her to heal is home, but the safest place for her to be is here. Wish there was a middle ground.
PS Wanted to add another point of praise - two of the patients who have been in hospital for a LONG time now have been given the green light to go into accommodation before heading home. I rejoice for them!!
Eleanor and her family live nearby, and the night before we thought we were heading back to Adelaide we went to Eleanor's house for a play and dinner. It was lovely. And very normal feeling. And the roasted pumpkin risotto with a glass of white wine were obviously just what I needed in preparation for the weekend we just went through!
They are a blessing to us in a city where we don't have family or friends. And ironically, we have been a blessing to them too as they just moved here from London three months ago. And Eleanor's Grandma lives near us in Adelaide, so we will be able to see them again when they visit in the future!
Though it looked like Shae's fluid drainage was decreasing, the lower fluid levels were due to a kink in her drain causing it to block. Fortunately it is now "unkinked", but the fluid keeps draining out.
We are pressing on, but it is difficult now that the finish line seems to have disappeared. Neither of us are sleeping very well. Today we were able to speak with Shae's care manager and rearrange her overnight care schedule which may hopefully mean fewer disturbances through the night. Strangely, the best place for her to heal is home, but the safest place for her to be is here. Wish there was a middle ground.
PS Wanted to add another point of praise - two of the patients who have been in hospital for a LONG time now have been given the green light to go into accommodation before heading home. I rejoice for them!!
Saturday, April 18, 2009
Fluid Update
I met Shae in recovery not long after she went under her anaesthetic. They had inserted a "pigtail drain" in her right side and when I got there the fluid was quite literally gushing out. After about 30 minutes the reservoir had collected 800mls!
All I keep thinking is "Thank goodness we didn't get on the plane with all that inside her!". Imagine what the pressures in the aircraft could have done with that!
Shae is looking much better today. What I thought was just lethargy because of an oncoming cold and post-surgery recovery, was actually half her right lung squashed because of fluid buildup. Her oxygen saturations had dropped into the low 80's, but are now back up in the mid 90's.
Exquisite flowers arrived from Mia and Grandad this morning and now her room smells like a garden! It's not home, but it's safe and we are thankful.
I also managed to arrange a bigger room at Ronald McDonald House for the next time I can take Shae out into accommodation. It overlooks the park.
I keep mulling over Psalm 103 and thank God for all His concessions. God is good. All the time.
All I keep thinking is "Thank goodness we didn't get on the plane with all that inside her!". Imagine what the pressures in the aircraft could have done with that!
Shae is looking much better today. What I thought was just lethargy because of an oncoming cold and post-surgery recovery, was actually half her right lung squashed because of fluid buildup. Her oxygen saturations had dropped into the low 80's, but are now back up in the mid 90's.
Exquisite flowers arrived from Mia and Grandad this morning and now her room smells like a garden! It's not home, but it's safe and we are thankful.
I also managed to arrange a bigger room at Ronald McDonald House for the next time I can take Shae out into accommodation. It overlooks the park.
I keep mulling over Psalm 103 and thank God for all His concessions. God is good. All the time.
Friday, April 17, 2009
And all of a sudden...
Today! We're going home today!!!
We came in to 7west this morning to pick up our flight details and get the all clear to fly back to Adelaide. Drain sites looked good. Went to have a standard echo.
Next thing I knew I was taking Shae down for a chest x-ray, the surgeons were consulted, she was readmitted and I have just left her in theatre to have a new chest drain insterted. There was an effusion (build up of fluid) on her right side.
So, we are back in hospital for a while yet. Shae has been distraught since the news that we weren't going home. She is angry and extremely disappointed. And why wouldn't she be?
I am disappointed too.
PS But praise the Lord that we didn't go back on Wednesday and end up having an emergency transfer back! I can still find the silver linings.
We came in to 7west this morning to pick up our flight details and get the all clear to fly back to Adelaide. Drain sites looked good. Went to have a standard echo.
Next thing I knew I was taking Shae down for a chest x-ray, the surgeons were consulted, she was readmitted and I have just left her in theatre to have a new chest drain insterted. There was an effusion (build up of fluid) on her right side.
So, we are back in hospital for a while yet. Shae has been distraught since the news that we weren't going home. She is angry and extremely disappointed. And why wouldn't she be?
I am disappointed too.
PS But praise the Lord that we didn't go back on Wednesday and end up having an emergency transfer back! I can still find the silver linings.
Wednesday, April 15, 2009
Who Moved the Finish Line?
Just had a checkup with the doctors on 7west. Drain sites are looking a bit better, but not good enough for them to give us the all clear to fly back. So we'll try again on Friday.
Back to Ronald McDonald House.
Just have to say how amazing the Ronald McDonald House is. We are comfortable there and the facilities include a big fully equipped kitchen, lots of bathrooms, unlimited clean linen, tea & coffee and all in a lovely location just next to a park. There are also various companies and clubs who come in and provide families with dinners on occasion. The next dinner will be on Thursday night provided by AXA. I was hoping to miss that one.... but anyway! We have been so well taken care of and I am extremely grateful.
The first night that Asha and Ethan were visiting Shae informed them that they would be eating dinner at McDonalds. She had deduced that if they were staying at Ronald McDonald's house then, of course, that is where they would be eating! Since that was the easiest option that night (there is a McDonalds within the hospital building - go figure!) and Shae had already declared it to be so, it is what we did. Asha has now declared that cheeseburgers are her favourite food. Oh dear.
Back to Ronald McDonald House.
Just have to say how amazing the Ronald McDonald House is. We are comfortable there and the facilities include a big fully equipped kitchen, lots of bathrooms, unlimited clean linen, tea & coffee and all in a lovely location just next to a park. There are also various companies and clubs who come in and provide families with dinners on occasion. The next dinner will be on Thursday night provided by AXA. I was hoping to miss that one.... but anyway! We have been so well taken care of and I am extremely grateful.
The first night that Asha and Ethan were visiting Shae informed them that they would be eating dinner at McDonalds. She had deduced that if they were staying at Ronald McDonald's house then, of course, that is where they would be eating! Since that was the easiest option that night (there is a McDonalds within the hospital building - go figure!) and Shae had already declared it to be so, it is what we did. Asha has now declared that cheeseburgers are her favourite food. Oh dear.
Tuesday, April 14, 2009
Easter
It has been quite some Easter for our little family!
As Matt posted, he and the kids came over on Thursday to surprise Shae with a visit. I'm not sure what we expected, but when Asha and Ethan walked into Shae's hospital room she just looked up and said "Hi" as if it was perfectly normal that her sister and brother would be there. Classic!
The weekend was busy in the hospital. On Good Friday they have their annual fundraising appeal which is televised on Channel 7. There were celebrities from Channel 7 TV shows and footballers visiting patients throughout the hospital. The only visitors Shae was interested in (or who we really recognised) were Mr. Happy, Ronald McDonald and the Cadbury Easter Bunny!
When the Drs did their rounds on Friday the fluid output in Shae's drains had decreased a lot. She had three drains coming from her chest - one collecting fluid in a single reservoir and the other two channelled into a shared reservoir. They asked for the two to be seperated into individual reservoirs so they could be sure where the fluid was coming from.
On Saturday two of the drains had stopped collecting fluid and they decided to take them out. Yay! The third one was to stay for another 24-48 hours. Even though they gave Shae medication to help with the discomfort and to relax her, it was still very stressful for her having the drains removed. I did all I could to distract and calm her (reading "Amber the Orange Fairy", singing, holding her hands...). She yelled a lot (nothing wrong with her lungs!). And finally it was over. Wish they'd offered me some of that special medication!
Saturday afternoon I had a lovely time with Ethan and Asha at Southbank, on the trams, visiting Victoria Market, Federation Square etc. It was a breath of fresh air and nice for all of us to be away from the hospital environment for a while.
On Sunday morning the kids on the ward awoke to bunny footprints stuck to the floor throughout the ward and presents and chocolate left by their beds. Shae took great delight at the footprints left in the toilet (obviously a rest stop was required!). It was sweet. After the ward rounds (at which the go ahead was given for drain #3 to be removed) our family headed down to the hospital chapel for the Easter service. We only managed to catch the last 5 mins (!!), but that was probably as long as Ethan could sit still and quietly for anyway. We managed to sing "Christ the Lord is Risen Today", and it was nice to have that focus back in the day. Then we headed out to the hospital garden for our family easter egg hunt. It was such a delight to have all the kids together - they thoroughly enjoyed it. All of us have eaten more than enough chocolate to last until next year!
As Matt posted, he and the kids came over on Thursday to surprise Shae with a visit. I'm not sure what we expected, but when Asha and Ethan walked into Shae's hospital room she just looked up and said "Hi" as if it was perfectly normal that her sister and brother would be there. Classic!
The weekend was busy in the hospital. On Good Friday they have their annual fundraising appeal which is televised on Channel 7. There were celebrities from Channel 7 TV shows and footballers visiting patients throughout the hospital. The only visitors Shae was interested in (or who we really recognised) were Mr. Happy, Ronald McDonald and the Cadbury Easter Bunny!
When the Drs did their rounds on Friday the fluid output in Shae's drains had decreased a lot. She had three drains coming from her chest - one collecting fluid in a single reservoir and the other two channelled into a shared reservoir. They asked for the two to be seperated into individual reservoirs so they could be sure where the fluid was coming from.
On Saturday two of the drains had stopped collecting fluid and they decided to take them out. Yay! The third one was to stay for another 24-48 hours. Even though they gave Shae medication to help with the discomfort and to relax her, it was still very stressful for her having the drains removed. I did all I could to distract and calm her (reading "Amber the Orange Fairy", singing, holding her hands...). She yelled a lot (nothing wrong with her lungs!). And finally it was over. Wish they'd offered me some of that special medication!
Saturday afternoon I had a lovely time with Ethan and Asha at Southbank, on the trams, visiting Victoria Market, Federation Square etc. It was a breath of fresh air and nice for all of us to be away from the hospital environment for a while.
On Sunday morning the kids on the ward awoke to bunny footprints stuck to the floor throughout the ward and presents and chocolate left by their beds. Shae took great delight at the footprints left in the toilet (obviously a rest stop was required!). It was sweet. After the ward rounds (at which the go ahead was given for drain #3 to be removed) our family headed down to the hospital chapel for the Easter service. We only managed to catch the last 5 mins (!!), but that was probably as long as Ethan could sit still and quietly for anyway. We managed to sing "Christ the Lord is Risen Today", and it was nice to have that focus back in the day. Then we headed out to the hospital garden for our family easter egg hunt. It was such a delight to have all the kids together - they thoroughly enjoyed it. All of us have eaten more than enough chocolate to last until next year!
Drain 3 was removed before Matt and kids departed for home. Rejoice!
Yesterday I was allowed to take Shae over to my accommodation to stay with me until our next checkup (which will be tomorrow). She is doing remarkably well, and I am managing to juggle the fluid monitoring and dosing all the medications. When I went to the hospital pharmacy to collect them yesterday I felt a bit teary seeing all the bottles. Overwhelming. She is on an antibiotic 4x/day, anti-hypertensive 3x/day, diuretic 2x/day, another diuretic once/day and anticoagulation medication once/day! I have her medication and drinks lists written up on pretty posters with butterflies on them. I haven't mucked it up yet....
So much more to write and gaps to fill in. More soon.
Monday, April 13, 2009
Finish line in sight!!
Dear friends, Denby hasn't had access to a computer over the Easter long weekend so I am standing in for a brief update.
Asha, Ethan and I have just returned from a visit to Melbourne. It was wonderful to be together as a family again.
I am thrilled to report that Shae's final chest drain was removed yesterday. Today, post surgery day eleven, she will be discharged from hospital and join Denby in nearby accommodation.
Shae has a mild infection at the drain wound site, for which she is being treated with antibiotics. Apart from this, she seems to be in perfect health.
I will write more later but would like to thank each of you for your support and especially for your prayers. We have been humbled (astonished really) at the mercy and grace which God has poured out on our family on this leg of our journey. It has been a remarkable testament to the effectiveness of prayer.
In the hospital ward this trip I met the families of 3 other children who have undergone the same surgery as Shae. One was discharged from hospital a couple of days ago after a 3 month stay. To date the other two kids have been in hospital for six and eight weeks respectively.
I'm lost for words.
With much love and thanks,
Matt
Asha, Ethan and I have just returned from a visit to Melbourne. It was wonderful to be together as a family again.
I am thrilled to report that Shae's final chest drain was removed yesterday. Today, post surgery day eleven, she will be discharged from hospital and join Denby in nearby accommodation.
Shae has a mild infection at the drain wound site, for which she is being treated with antibiotics. Apart from this, she seems to be in perfect health.
I will write more later but would like to thank each of you for your support and especially for your prayers. We have been humbled (astonished really) at the mercy and grace which God has poured out on our family on this leg of our journey. It has been a remarkable testament to the effectiveness of prayer.
In the hospital ward this trip I met the families of 3 other children who have undergone the same surgery as Shae. One was discharged from hospital a couple of days ago after a 3 month stay. To date the other two kids have been in hospital for six and eight weeks respectively.
I'm lost for words.
With much love and thanks,
Matt
Wednesday, April 8, 2009
To grump or not to grump
We had a midnight room change.
This unsettled Shae and meant that neither of us had a particularly good sleep. She was definitely a grump when she woke up this morning.
The day, however, seems to be improving as we go. Fluid output has been the same for the past 3 days now (which is somewhat discouraging for me), but one of the drains has no output so that one may come out tomorrow. We walked off the ward and down to the Starlight Room where Shae beautifully coloured in an easter egg picture which was shown on the hospital television station.
The room Shae is now in has children who are more her age. And the nurses seem even better equipped to cheer up, care for and entertain the kids, which is fantastic. When I left her this morning to have a shower and breakfast she was cross at me for leaving. By the time I returned she was smiling and happy. Hooray!
She is feeling pretty good within herself generally, though there are certainly moments when she's just had enough. She has no qualms about letting the nursing staff know how she feels about being prodded and poked and fed yucky medicine. It is at those moments I find myself in a mummy dilemma - do I push for best manners at all times or do I just let her get it out of her system (afterall, I can understand why she is feeling like she is!!). I'm trying to strike an appropriate balance. I think that after Shae has had a chance to wake up each morning, realise where she is and deal with that concept, she is also getting better at accepting it and getting on with it.
This unsettled Shae and meant that neither of us had a particularly good sleep. She was definitely a grump when she woke up this morning.
The day, however, seems to be improving as we go. Fluid output has been the same for the past 3 days now (which is somewhat discouraging for me), but one of the drains has no output so that one may come out tomorrow. We walked off the ward and down to the Starlight Room where Shae beautifully coloured in an easter egg picture which was shown on the hospital television station.
The room Shae is now in has children who are more her age. And the nurses seem even better equipped to cheer up, care for and entertain the kids, which is fantastic. When I left her this morning to have a shower and breakfast she was cross at me for leaving. By the time I returned she was smiling and happy. Hooray!
She is feeling pretty good within herself generally, though there are certainly moments when she's just had enough. She has no qualms about letting the nursing staff know how she feels about being prodded and poked and fed yucky medicine. It is at those moments I find myself in a mummy dilemma - do I push for best manners at all times or do I just let her get it out of her system (afterall, I can understand why she is feeling like she is!!). I'm trying to strike an appropriate balance. I think that after Shae has had a chance to wake up each morning, realise where she is and deal with that concept, she is also getting better at accepting it and getting on with it.
Tuesday, April 7, 2009
Walking the Ward
Shae has been walking quite a bit the past 2 days. When I say "quite a bit", I mean walking from her room along a corridor to the playroom, to the bathroom etc. Yesterday and today have seen us move away from the blue spectrum and much closer to yellow.
Last night at about 8:30pm, after having made a playroom run and 3 toilet trips during the day, Shae asked if she could once more get out of bed - so that she could walk across the room and look at baby Ellie who is her "across the room" neighbour.
Let me put into perspective what a big deal it is for Shae to take these little trips. In order to walk it takes two adult to help carry all the "accoutrements" - her fluid receptacles, drainage tubes and IV pole. Before even getting out of bed we need to unplug her heart rate, respiration and oxygen saturation monitors, clamp the drainage tubes and disconnect from the suction. And when she gets back into bed we have to untangle all the bits and hook it all back up again! It is a production - believe me - so for her to want to do this just to see a little baby across the room really moved me (exhausted me a bit as well!). 
Today our friends Steph and Dale and their boys came to visit us. It was a real highlight and Shae definitely rose to the occassion! She walked down to the playroom with them (going at record pace), played with the doll house, posed for the cameras. I praise God that both times we have been here for Shae's surgery He has arranged a visit from someone in our Hong Kong family. Medicine for our souls! 
Fluid drainage is constant and steady. Please pray that it starts to decrease soon!!!!
Last night at about 8:30pm, after having made a playroom run and 3 toilet trips during the day, Shae asked if she could once more get out of bed - so that she could walk across the room and look at baby Ellie who is her "across the room" neighbour.
Let me put into perspective what a big deal it is for Shae to take these little trips. In order to walk it takes two adult to help carry all the "accoutrements" - her fluid receptacles, drainage tubes and IV pole. Before even getting out of bed we need to unplug her heart rate, respiration and oxygen saturation monitors, clamp the drainage tubes and disconnect from the suction. And when she gets back into bed we have to untangle all the bits and hook it all back up again! It is a production - believe me - so for her to want to do this just to see a little baby across the room really moved me (exhausted me a bit as well!).
Today our friends Steph and Dale and their boys came to visit us. It was a real highlight and Shae definitely rose to the occassion! She walked down to the playroom with them (going at record pace), played with the doll house, posed for the cameras. I praise God that both times we have been here for Shae's surgery He has arranged a visit from someone in our Hong Kong family. Medicine for our souls!
Fluid drainage is constant and steady. Please pray that it starts to decrease soon!!!!
Sunday, April 5, 2009
The Blues in Pink
Today Shae has a slight case of the blues. This is typical.
Her fluid drainage is steady. She has had her central line and pacing wires removed. Very good.
We will attempt to go for a walk with Shae and the physio down the passage of 7 west. After that it will be time for Matt to head to the airport.
And all of a sudden, just typing this I feel a bit homesick and sad. Don't get me wrong, I feel well supported and energised and equipped through prayers and a couple of good nights sleep (Matt has spent the last two nights by Shae's bed so that I can be rested before he heads off. Thank you my man, you are amazing!).
Perhaps I will allow myself to have a little of the "Day 3 Blues" as well. I miss my Asha-bug and my little man Ethan. And I don't really know when I will see them again. They have had a wonderful week with Mia and Grandad. They are safe and loved and being ever so well cared for. This gives me great peace. But when I hear their little voices each night, I know they are starting to miss us too. It will be good for them to have their Daddy back.
Thank goodness it's Sunday! Tonight Shae and I can cosy up on her bed and watch the dancing and have a bit of chocolate. That ought to ease the blues a bit.....
Her fluid drainage is steady. She has had her central line and pacing wires removed. Very good.
We will attempt to go for a walk with Shae and the physio down the passage of 7 west. After that it will be time for Matt to head to the airport.
And all of a sudden, just typing this I feel a bit homesick and sad. Don't get me wrong, I feel well supported and energised and equipped through prayers and a couple of good nights sleep (Matt has spent the last two nights by Shae's bed so that I can be rested before he heads off. Thank you my man, you are amazing!).
Perhaps I will allow myself to have a little of the "Day 3 Blues" as well. I miss my Asha-bug and my little man Ethan. And I don't really know when I will see them again. They have had a wonderful week with Mia and Grandad. They are safe and loved and being ever so well cared for. This gives me great peace. But when I hear their little voices each night, I know they are starting to miss us too. It will be good for them to have their Daddy back.
Thank goodness it's Sunday! Tonight Shae and I can cosy up on her bed and watch the dancing and have a bit of chocolate. That ought to ease the blues a bit.....
Day 2
I forgot yesterday was Saturday. The days all blend into one here. So when I came down to post in the Family Resource Centre it had just closed for the day!
Shae had a good day and was actively involved in her physio session which involved standing and walking on the spot beside her bed, coughing, blowing bubbles and sitting up (our favourite part, because we each had a turn at cuddling her on our laps!). The physio sessions are important as her lungs have partially collapsed which limits the amount of oxygen uptake in her blood. This is quite common after a Fontan operation and will improve as she exercises her lungs more and more.
Her fluid drainage from her chest has picked up since she has started moving - this is good because it is better out than in. Fluid drainage is also the thing that will determine when she can be discharged from hospital. Once the fluid stops draining we are one step closer to coming home. There is no way of knowing how long the fluid will drain for. In some children it may be 5 days, in others it can be anywhere up to 6 weeks. So, how long is a piece of string?
While her progress is good, it is hard work for Shae. She continues to be cooperative which is fantastic, but with lower medication doses she is much more conscious now of what is happening than she was on day 1.
Shae loved being able to talk to Asha and Ethan on the phone tonight, and also to her friends Annie and Chloe in India.
Shae had a good day and was actively involved in her physio session which involved standing and walking on the spot beside her bed, coughing, blowing bubbles and sitting up (our favourite part, because we each had a turn at cuddling her on our laps!). The physio sessions are important as her lungs have partially collapsed which limits the amount of oxygen uptake in her blood. This is quite common after a Fontan operation and will improve as she exercises her lungs more and more.
Her fluid drainage from her chest has picked up since she has started moving - this is good because it is better out than in. Fluid drainage is also the thing that will determine when she can be discharged from hospital. Once the fluid stops draining we are one step closer to coming home. There is no way of knowing how long the fluid will drain for. In some children it may be 5 days, in others it can be anywhere up to 6 weeks. So, how long is a piece of string?
While her progress is good, it is hard work for Shae. She continues to be cooperative which is fantastic, but with lower medication doses she is much more conscious now of what is happening than she was on day 1.
Shae loved being able to talk to Asha and Ethan on the phone tonight, and also to her friends Annie and Chloe in India.
Friday, April 3, 2009
7 West
What a night!
More things to give our great God great praise for....
We left Shae at about 8:30pm to head back and get some sleep (phones on should she wake and need us). We phoned the ICU at about midnight to find out how she was going and learned that she had been extubated at about 10pm and breathing strongly on her own.
The nurse said she was comfortable and not distressed so we caught another few hours of sleep.
I woke again at 4am and wanted to get back to Shae's side, so I started getting organised to go. Matt (my knight in shining armor!) didn't want me walking to the hospital on my own in the dark, so he got up too and we were back at Shae's side by 5am.
By 11:30am she was being transferred out of ICU and back up to the cardiac ward, 7 West. She is in the original room she was transferred to when she was born and has a berth by the window.
Back in her very first bedroom!
And once again in record time.
She is now down to 3 drug infusions, 3 chest drains, pace wires and a couple of IV lines. She is still drifting in and out of sleep. Her biggest discomfort is her thirst. She can only have about 15ml of fluid per hour at this stage and that is tough to explain to a thirsty little girl.
I have managed to get a room at Ronald McDonald House for the remainder of my stay (and there is also a foldout bed by Shae), which is fantastic! We will move all our bags from current accommodation just as soon as the rain and thunderstorms outside subside!
More things to give our great God great praise for....
We left Shae at about 8:30pm to head back and get some sleep (phones on should she wake and need us). We phoned the ICU at about midnight to find out how she was going and learned that she had been extubated at about 10pm and breathing strongly on her own.
The nurse said she was comfortable and not distressed so we caught another few hours of sleep.
I woke again at 4am and wanted to get back to Shae's side, so I started getting organised to go. Matt (my knight in shining armor!) didn't want me walking to the hospital on my own in the dark, so he got up too and we were back at Shae's side by 5am.
By 11:30am she was being transferred out of ICU and back up to the cardiac ward, 7 West. She is in the original room she was transferred to when she was born and has a berth by the window.
Back in her very first bedroom!
And once again in record time.
She is now down to 3 drug infusions, 3 chest drains, pace wires and a couple of IV lines. She is still drifting in and out of sleep. Her biggest discomfort is her thirst. She can only have about 15ml of fluid per hour at this stage and that is tough to explain to a thirsty little girl.
I have managed to get a room at Ronald McDonald House for the remainder of my stay (and there is also a foldout bed by Shae), which is fantastic! We will move all our bags from current accommodation just as soon as the rain and thunderstorms outside subside!
Thursday, April 2, 2009
Best in over a year....
We have been sitting with Shae for most of the afternoon. She is still asleep and will slowly wake up over the next hour or two, but they need her to start breathing on her own a little stronger before they allow her to gain consciousness.
She looks beautiful. Even with all the tubes and drains and drips (I counted and photographed 8 different drug infusions, a saline drip, a blood infusion, 3 chest drains, some pace wires, the ventilator in one nostril, an internal thermometer line in the other and a urine catheter). Her lips and fingernails and feet are pink! 
We just saw the surgeon and the anaesthetist who were both thrilled with how well the procedure went. The anaesthetist said it was the best and most straight forward procedure with the best team he's had in over a year!!! I took great delight in telling him that there were hundreds of people praying for them and for Shae all over the world.
The power of prayer.
Thank you.
She looks beautiful. Even with all the tubes and drains and drips (I counted and photographed 8 different drug infusions, a saline drip, a blood infusion, 3 chest drains, some pace wires, the ventilator in one nostril, an internal thermometer line in the other and a urine catheter). Her lips and fingernails and feet are pink!
We just saw the surgeon and the anaesthetist who were both thrilled with how well the procedure went. The anaesthetist said it was the best and most straight forward procedure with the best team he's had in over a year!!! I took great delight in telling him that there were hundreds of people praying for them and for Shae all over the world.
The power of prayer.
Thank you.
Day Zero
This is a very quick post before I run up to the ICU to see Shae post-surgery!
We were expecting a phone call at about 2 - 3pm, but the surgeon called at 12:30pm to say that he had finished, all had gone very well and Shae would be in ICU in about an hour. That's in about 10 minutes, so I'm racing!!
Praise the Lord that all went so well and so quickly! Typical of Him and Shae, really. Like I said, they have a pretty brilliant track record.
I will post in more detail later tonight, but I'm keen to get up and see my baby. I expect to see a beautiful angel hidden beneath a swollen and blue face with lots of tubes, ventilator, fresh incision...etc. Desperate to be by her side!
Let everything that is in me praise the Lord. PRAISE THE LORD!!!!
We were expecting a phone call at about 2 - 3pm, but the surgeon called at 12:30pm to say that he had finished, all had gone very well and Shae would be in ICU in about an hour. That's in about 10 minutes, so I'm racing!!
Praise the Lord that all went so well and so quickly! Typical of Him and Shae, really. Like I said, they have a pretty brilliant track record.
I will post in more detail later tonight, but I'm keen to get up and see my baby. I expect to see a beautiful angel hidden beneath a swollen and blue face with lots of tubes, ventilator, fresh incision...etc. Desperate to be by her side!
Let everything that is in me praise the Lord. PRAISE THE LORD!!!!
Go
I have just left Shae after watching her go under anaesthetic. She was a bit teary last night before bed and quite teary before going under. But she skipped to the hospital - that image is burned in my brain. A number of times she said to me "I don't want to do this". I know, and if there was any way I could do it for her.....
We anticipate a 6 hour wait (approximately). I know she is in the very best hands who are being guided by the Master Surgeon Himself - but still my heart is aching.
It's harder this time.
Will endeavour to post tonight with an update...
We anticipate a 6 hour wait (approximately). I know she is in the very best hands who are being guided by the Master Surgeon Himself - but still my heart is aching.
It's harder this time.
Will endeavour to post tonight with an update...
Tuesday, March 31, 2009
Postponed
I think the title says it all! Shae's surgery is now scheduled for Thursday morning.
They will ring us tomorrow afternoon at about 5pm to confirm whether to fast her overnight tomorrow night. I feel surprisingly peaceful about it all (most likely because I had a good nights sleep last night).
Today we caught some trams, visited the Queen Victoria Markets (yellow peaches were $2/kg!!) and strolled along Southbank for old times' sake. And again it was kind of comforting to be in familiar places and I had some really good memories of the last time we "lived" in Melbourne.
They will ring us tomorrow afternoon at about 5pm to confirm whether to fast her overnight tomorrow night. I feel surprisingly peaceful about it all (most likely because I had a good nights sleep last night).
Today we caught some trams, visited the Queen Victoria Markets (yellow peaches were $2/kg!!) and strolled along Southbank for old times' sake. And again it was kind of comforting to be in familiar places and I had some really good memories of the last time we "lived" in Melbourne.
BTW The meeting with the surgeon yesterday went really well. He was very positive about Shae's readiness for this surgery and expressed that they have made major progress in the area of Fontan operations even since she was born.
We also learned yesterday that Shae will be on restricted fluids for quite some time post-surgery (about 50% of usual daily requirements) as well as diuretics, to prevent fluid buildup. She will be on an anticoagulant drug called Warfarin which takes a fair bit of management to achieve and maintain optimal dosage levels. This will mean weekly blood tests and measuring food and fluid intake for a while. And, Amanda, it means the return of the yellow!
We thought we had a fair idea of what lay ahead. But we are still learning as we go!! Thankfully Matt and I have continued peace about the whole experience and feel confident about managing Shae's recovery and her ongoing care.
Monday, March 30, 2009
Time Warp
We are here. It is good to be underway. Yesterday was terribly difficult kissing Asha and Ethan goodbye. I am glad that bit is over.
Shae, however, is enjoying having Mummy and Daddy all to herself. When we got to Melbourne yesterday afternoon we enjoyed a walk to the supermarket for milk and bread (and Breakaway chocolate...), before a little play in the park and dinner while watching "So You Think You Can Dance?". This morning when she woke up Shae looked at me and said "I had such a lovely afternoon yesterday". And I did too.
Today has been a little different, but also good.
We arrived at admissions at exactly 8:32am this morning and then proceeded to the 7th floor. Apart from the fact that I was missing the Emmalunga pram carrying a tiny Asha, we could have been back in 2004! Everything is very familiar, including many of the staff. While it is a bit bizarre, it is also strangely comforting. I know that God has walked these corridors with me many times before and I can feel His hand on us again now.
Shae has coped well with all of the tests so far (ECG, echocardiogram, height, weight, oxygen sats, blood pressure, chest x-ray) except when they took the blood samples. Then she let us know just how disapproving she was!!!
Shae, however, is enjoying having Mummy and Daddy all to herself. When we got to Melbourne yesterday afternoon we enjoyed a walk to the supermarket for milk and bread (and Breakaway chocolate...), before a little play in the park and dinner while watching "So You Think You Can Dance?". This morning when she woke up Shae looked at me and said "I had such a lovely afternoon yesterday". And I did too.
Today has been a little different, but also good.
We arrived at admissions at exactly 8:32am this morning and then proceeded to the 7th floor. Apart from the fact that I was missing the Emmalunga pram carrying a tiny Asha, we could have been back in 2004! Everything is very familiar, including many of the staff. While it is a bit bizarre, it is also strangely comforting. I know that God has walked these corridors with me many times before and I can feel His hand on us again now.
Shae has coped well with all of the tests so far (ECG, echocardiogram, height, weight, oxygen sats, blood pressure, chest x-ray) except when they took the blood samples. Then she let us know just how disapproving she was!!!
Her surgery is still listed for Wednesday, though that could change between now and then. We will need to arrive here at 6:45am on the day and even then it could be rescheduled. So we really are in "leave it in God's hands" territory - walking by faith and not by sight.
We have yet to see the cardiologist and surgeon today. Then we have the night off.
We have yet to see the cardiologist and surgeon today. Then we have the night off.
Friday, March 27, 2009
All Systems are "Go", All Lights are Green
Today Shae and I visited the Women's and Children's Hospital to get final clearance for takeoff on Sunday.
We have tickets in hand and a nod from our cardiologist. It's really happening.
Yesterday we were not so sure....
Matt received a call just before lunch to say that the surgery had been delayed until April 17th. There have been some other patients who have not reached "discharge status" and so there was no space for Shae.
This was, both logistically and emotionally, a nightmare for us. How on earth would we manage this? What about time off work? What about our other kids? And Grandparents (who, might I say, all said they would bend over backward to support us however the situation ended up)? And....., and....., and..... And a week of lock down for no reason??? We pleaded our case with the cardiology unit in Melbourne while others pleaded our case before the Lord. And then we waited. And I went to bed and fell apart.
And then a miracle happened. They reenlisted our surgery date. You must believe me when I say that it was a miracle. THIS DOES NOT HAPPEN. Cardiac surgery is rescheduled on a regular basis for all sorts of reasons that are beyond the control of everyone involved. So I can only believe that God opened the door for our family to walk the path as it had been originally planned.
The surgery may be pushed on by a day or two (though we will continue to pray for April1st), but it should happen next week.
I have realised through this that I have to let go of my expectations and plans for how this will all play out. It is better to learn this now, before we even take off, so that I can take each moment as it comes and allow God to work His healing in Shae in His perfect time. It is not easy as a parent to do this - especially when I need to leave my other littlies for a while. But I know that just as I am doing all I can to prepare, comfort, protect, provide for and nurture my children through this time, my Heavenly Father is so doing for me (and them too!) - and He is better at it, by far, than I am.
We have tickets in hand and a nod from our cardiologist. It's really happening.
Yesterday we were not so sure....
Matt received a call just before lunch to say that the surgery had been delayed until April 17th. There have been some other patients who have not reached "discharge status" and so there was no space for Shae.
This was, both logistically and emotionally, a nightmare for us. How on earth would we manage this? What about time off work? What about our other kids? And Grandparents (who, might I say, all said they would bend over backward to support us however the situation ended up)? And....., and....., and..... And a week of lock down for no reason??? We pleaded our case with the cardiology unit in Melbourne while others pleaded our case before the Lord. And then we waited. And I went to bed and fell apart.
And then a miracle happened. They reenlisted our surgery date. You must believe me when I say that it was a miracle. THIS DOES NOT HAPPEN. Cardiac surgery is rescheduled on a regular basis for all sorts of reasons that are beyond the control of everyone involved. So I can only believe that God opened the door for our family to walk the path as it had been originally planned.
The surgery may be pushed on by a day or two (though we will continue to pray for April1st), but it should happen next week.
I have realised through this that I have to let go of my expectations and plans for how this will all play out. It is better to learn this now, before we even take off, so that I can take each moment as it comes and allow God to work His healing in Shae in His perfect time. It is not easy as a parent to do this - especially when I need to leave my other littlies for a while. But I know that just as I am doing all I can to prepare, comfort, protect, provide for and nurture my children through this time, my Heavenly Father is so doing for me (and them too!) - and He is better at it, by far, than I am.
Tuesday, March 24, 2009
Victory Song
Last night we attended our church's weekly prayer meeting. The meeting was focused around praying for Shae and our family as we prepare for her surgery. On the way there in the car I asked Matt if I could resign from this mission - just skip it altogether and get on with the next chapter.
I arrived at the meeting tired. But, oh!! When I left I felt like I was being carried! The prayers of the faithful truly are mighty - they are mighty to see results in healing, encouragement, comfort, peace, joy, hope, perseverance, and the list goes on. Our God is so amazingly GOOD!
Thank you to everyone who was at the meeting and prayed with us there. And thank you to everyone else we know who has been committed to praying for us along the way (and some who we don't even know!). I don't know how to fully express how much of a blessing and how essential it is to us.
Shae is sounding less congested tonight and I feel confident that we will be fit to fly on Sunday....
I arrived at the meeting tired. But, oh!! When I left I felt like I was being carried! The prayers of the faithful truly are mighty - they are mighty to see results in healing, encouragement, comfort, peace, joy, hope, perseverance, and the list goes on. Our God is so amazingly GOOD!
Thank you to everyone who was at the meeting and prayed with us there. And thank you to everyone else we know who has been committed to praying for us along the way (and some who we don't even know!). I don't know how to fully express how much of a blessing and how essential it is to us.
Shae is sounding less congested tonight and I feel confident that we will be fit to fly on Sunday....
Monday, March 23, 2009
Lockdown!
Over the weekend we have been debating whether or not to send Shae (and Asha) to school this week.
Today I took her to see her ENT who confirmed that the grommet in her left ear is nearly out, the one in her right ear has totally dislodged, there is fluid buildup behind the eardrum and her hearing levels have plummeted again. He has put her on a 5 day course of antibiotics to ensure the congestion doesn't turn into a full blown ear infection (which would definitely prohibit her surgery).
We have decided that open heart surgery is a major enough reason to go into a mini "family quarantine". So, when I go and pick up Asha from school in a few minutes it will be her last day until next Monday.
I have asked Matt a couple of times today if I'm being paranoid. But we both agree that the most important thing at this point in time is to get Shae well and strong and to keep her that way until next week.
So, my week now looks somewhat different than I had planned. We will have an "at home" family vacation! It is a shame that the girls will miss the excursion to Urbrae Agricultural college which is scheduled for Wednesday. I was trying to figure out if it would be ok to go still until I discovered they would be visiting pigs and chickens...... perhaps we'll visit another time!!!!
Today I took her to see her ENT who confirmed that the grommet in her left ear is nearly out, the one in her right ear has totally dislodged, there is fluid buildup behind the eardrum and her hearing levels have plummeted again. He has put her on a 5 day course of antibiotics to ensure the congestion doesn't turn into a full blown ear infection (which would definitely prohibit her surgery).
We have decided that open heart surgery is a major enough reason to go into a mini "family quarantine". So, when I go and pick up Asha from school in a few minutes it will be her last day until next Monday.
I have asked Matt a couple of times today if I'm being paranoid. But we both agree that the most important thing at this point in time is to get Shae well and strong and to keep her that way until next week.
So, my week now looks somewhat different than I had planned. We will have an "at home" family vacation! It is a shame that the girls will miss the excursion to Urbrae Agricultural college which is scheduled for Wednesday. I was trying to figure out if it would be ok to go still until I discovered they would be visiting pigs and chickens...... perhaps we'll visit another time!!!!
Friday, March 20, 2009
Getting Organised
It's Friday! Tomorrow Matt will arrive back after a week away. We have all missed him terribly and it will be such a relief to have him at home again.
Matt's return will also mark the start of serious preparations for Melbourne. I really need to sit down and figure out what information I need to pass on to caregivers, what I should be packing for Shae and for me etc. I only just started to seriously think about these things in the past couple of days.
If I am sitting by the bed for days on end do I want to be wearing jeans or tracky pants? And if comfort does indeed take precedence over style then I need to think about investing in an extra pair of trackies as I realise I only have one old pair of (quite large) Lorna Jane yoga pants which were given to me by a friend the last time I did a long stint at the Royal Childrens Hospital (just after I had given birth to the girls). The great thing about these yoga pants is that they have a drawstring waist, so they've been able to cinch in as my girth decreased. They are DEFINITELY on the "to pack" list.
Apart from clothes, I also need to think about entertainment. I need to get on with downloading more music to my ipod and find a good book to escape into if I get some quiet moments. I have our neighbour's 8- and 6-year-old daughters thinking about their recommendation of a chapter book or two for me to read to Shae to pass the hours. I will also try to get some stories on cd that she might be able to listen to.
Many years ago, (actually, when I was 5 myself) I was sick with Shingles. Very sick apparently. And in a lot of pain. Mum and I were just talking about it this week and it comforted me somewhat to know that I don't remember the pain. I do remember spending a lot of time in Mum and Dad's bed and being given numerous medicines in a rainbow of colours and listening to a particular casette tape of a man named Ken Medema who sang and told Christian children's stories. One of the stories was about a character called "Gorgles", the other was about "Rennis". I remember those stories very very well and the songs that were in them.
Though I have not been able to locate a copy of these stories to get Shae and I through this stint, I am trusting I will be able to find something equally special to use which will mark her spirit in a very precious way.
Matt's return will also mark the start of serious preparations for Melbourne. I really need to sit down and figure out what information I need to pass on to caregivers, what I should be packing for Shae and for me etc. I only just started to seriously think about these things in the past couple of days.
If I am sitting by the bed for days on end do I want to be wearing jeans or tracky pants? And if comfort does indeed take precedence over style then I need to think about investing in an extra pair of trackies as I realise I only have one old pair of (quite large) Lorna Jane yoga pants which were given to me by a friend the last time I did a long stint at the Royal Childrens Hospital (just after I had given birth to the girls). The great thing about these yoga pants is that they have a drawstring waist, so they've been able to cinch in as my girth decreased. They are DEFINITELY on the "to pack" list.
Apart from clothes, I also need to think about entertainment. I need to get on with downloading more music to my ipod and find a good book to escape into if I get some quiet moments. I have our neighbour's 8- and 6-year-old daughters thinking about their recommendation of a chapter book or two for me to read to Shae to pass the hours. I will also try to get some stories on cd that she might be able to listen to.
Many years ago, (actually, when I was 5 myself) I was sick with Shingles. Very sick apparently. And in a lot of pain. Mum and I were just talking about it this week and it comforted me somewhat to know that I don't remember the pain. I do remember spending a lot of time in Mum and Dad's bed and being given numerous medicines in a rainbow of colours and listening to a particular casette tape of a man named Ken Medema who sang and told Christian children's stories. One of the stories was about a character called "Gorgles", the other was about "Rennis". I remember those stories very very well and the songs that were in them.
Though I have not been able to locate a copy of these stories to get Shae and I through this stint, I am trusting I will be able to find something equally special to use which will mark her spirit in a very precious way.
Monday, March 16, 2009
On your marks...
I have put this blog together to keep you up to date with Shae's heart journey - how she is going, what the doctors are saying and how the rest of us are travelling with her. For now, that is its purpose (though I have great aspirations that it will blossom into so much more as time progresses!).
After knowing that Shae would need a third open heart surgery for five years, we finally have a date to put on it. April 1st. Today that is 16 sleeps away.
On March 29th Matt, Shae and I will fly to Melbourne, leaving Asha and Ethan in the care of my Mum and Dad here in Adelaide. Monday, March 30th, will be a day of preadmission tests for Shae at the Royal Children's Hospital. From what I understand this will be a long day - starting at 8:30am and ending ??? Tuesday will be a day off and then Wednesday is the big day.
Some of the reality of what is to come has started to hit home. I am ok when I don't think too much about it, but when I do - well, then the water works start (like in the gym today - and it wasn't because the weights were too heavy!). Am I anxious for myself? Of course not. Something which happened yesterday morning pierced my "Mother nerve" in a new way:
Being Sunday, I had readied all the kids and was walking up the footpath with them toward church (a 15 minute drive from home and only about 3 minutes late - not bad!). Shae mentioned that she wasn't feeling well and then promptly vomitted in the middle of the path. Though this was a little inconvenient I had to give her credit for a) not vomitting in the car, which would have been MUCH worse; b) not vomitting on herself (very much) or me or either of her siblings; and c) not vomitting inside the church. So, while one of our fellow church goers went to get a bucket of water to wash away the evidence, I consoled my little sickie, diverted foot traffic and informed the troops that we were heading back home.
Asha protested the change of plan, but was also able to suggest an acceptable alternative. I dropped her inside church with some trusted friends charged with the responsibility of delivering her to her sunday school class and headed to Matt's parents place for a cup of tea with Shae and Ethan. I took Shae to the bathroom to clean up the few spots of vomit on her skirt, wash her face and freshen her mouth with some toothpaste. And then she said it:
"Mummy, I wish I was Asha."
"Why is that sweetheart?"
"Because then I wouldn't feel sick all the time...."
CRACK
The tears welled up and I was forced to confront how different her world is from mine - and that she knows it.
How must it feel to only have 70% blood oxygen saturation, when all I've ever known is 100%? Why are her legs and knees always sore??? I just don't know.
This surgery (called a Fontan procedure, for anyone wishing to research it a little) will sort out the oxygen thing for her. What a remarkable difference that will have to make! As for the legs - well, we're praying that will be sorted out too.
We have been on the starting blocks for this leg of the race for a long time now. The starting gun will soon sound and we will run. Sometimes strongly and sometimes not so well. It will be a hard race....
...but the finish line will bring overwhelming victory!!!
After knowing that Shae would need a third open heart surgery for five years, we finally have a date to put on it. April 1st. Today that is 16 sleeps away.
On March 29th Matt, Shae and I will fly to Melbourne, leaving Asha and Ethan in the care of my Mum and Dad here in Adelaide. Monday, March 30th, will be a day of preadmission tests for Shae at the Royal Children's Hospital. From what I understand this will be a long day - starting at 8:30am and ending ??? Tuesday will be a day off and then Wednesday is the big day.
Some of the reality of what is to come has started to hit home. I am ok when I don't think too much about it, but when I do - well, then the water works start (like in the gym today - and it wasn't because the weights were too heavy!). Am I anxious for myself? Of course not. Something which happened yesterday morning pierced my "Mother nerve" in a new way:
Being Sunday, I had readied all the kids and was walking up the footpath with them toward church (a 15 minute drive from home and only about 3 minutes late - not bad!). Shae mentioned that she wasn't feeling well and then promptly vomitted in the middle of the path. Though this was a little inconvenient I had to give her credit for a) not vomitting in the car, which would have been MUCH worse; b) not vomitting on herself (very much) or me or either of her siblings; and c) not vomitting inside the church. So, while one of our fellow church goers went to get a bucket of water to wash away the evidence, I consoled my little sickie, diverted foot traffic and informed the troops that we were heading back home.
Asha protested the change of plan, but was also able to suggest an acceptable alternative. I dropped her inside church with some trusted friends charged with the responsibility of delivering her to her sunday school class and headed to Matt's parents place for a cup of tea with Shae and Ethan. I took Shae to the bathroom to clean up the few spots of vomit on her skirt, wash her face and freshen her mouth with some toothpaste. And then she said it:
"Mummy, I wish I was Asha."
"Why is that sweetheart?"
"Because then I wouldn't feel sick all the time...."
CRACK
The tears welled up and I was forced to confront how different her world is from mine - and that she knows it.
How must it feel to only have 70% blood oxygen saturation, when all I've ever known is 100%? Why are her legs and knees always sore??? I just don't know.
This surgery (called a Fontan procedure, for anyone wishing to research it a little) will sort out the oxygen thing for her. What a remarkable difference that will have to make! As for the legs - well, we're praying that will be sorted out too.
We have been on the starting blocks for this leg of the race for a long time now. The starting gun will soon sound and we will run. Sometimes strongly and sometimes not so well. It will be a hard race....
...but the finish line will bring overwhelming victory!!!
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