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.

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.

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!!!

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.

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.

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....

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!!!!

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.

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!!!