Things have continued to be pretty quiet here on the blog, for a couple of reasons. Last year we welcomed twins into our family, so 2017 was a bit of a blur! It has been great fun and chaos having 3 little ones. And the other reason is that Hannah’s heart function continues to be stable, praise God.
We had a couple visits to Hannah’s cardiologist last year, and he’s happy with how her current circulation is working. We’re still waiting for her next, and hopefully final, surgery to be scheduled (called the Fontan). The right timing is important – Hannah needs to be as big as she can for her lungs to cope with the new circulation, but the bigger she gets the lower her oxygen levels drop. The optimal time for surgery will probably be sometime towards the end of this year into next year. We’re continuing to learn to trust God in the waiting and enjoying the time we have with our energetic, opinionated, wonderful toddler.
In the meantime, the HeartKids charity are gearing up for Sweetheart month. They use February, hearts and love and all that, to raise much needed funds for research and awareness into Congenital Heart Disease. Here are some common facts about CHD…
We’re thankful for the support we received from HeartKids when Hannah was in hospital, and the ongoing connections I have with other heart parents, mainly online.
In the past I’ve really enjoyed participating in the daily photo challenge on instagram (follow @HeartKids for lots of cute photos), which I’ll be attempting again this year. Keep an eye out for HeartKids representatives fundraising at your local train station or in the city in mid February. You can find out more about HeartKids and ways to support them on their website.
I wait for the Lord, my whole being waits, and in his word I put my hope. – Psalm 130:5
I can’t quite believe it’s 2017 already! And its been a long time since I posted an update here about Hannah’s going.
Hannah is a busy, inquisitive, cheeky, beautiful 20 month old. In recent months we have been enjoying watching her gain skills and independence quickly. She can throw and kick a ball very well, and delights in scootering around. She seems to pick up new words and phrases daily and shows us affection with lots of hugs and kisses. She has definite opinions about things, which most of the time we delight in hearing.
All these things are normal for toddlers, and are a great joy for us knowing Hannah’s roller coaster start to life. Her cardiologist is also happy with how she’s going heart wise, and things are on track for her next operation to happen when she’s about 3 years old. He has told us to expect her to have some initial procedures sometime later next year to see if she’s suitable to have the next operation. The operation is called a Fontan procedure, you can read more about it here if you’re interested. It will be the third, and hopefully final, stage in the treatment of Hannah’s condition.
Between now and then our house is going to be a busy one, because our family is expanding! We found out a few months ago that we’re having twins! A little boy and girl! Many exclamation marks are needed for such exciting, surprising, and definitely daunting news. I can’t wait to see Hannah as a big sister, particularly seeing how much she loves her dollies.
When I was pregnant with Hannah, we found out about her congenital heart disease at the halfway fetal ultrasound, which you can read about it here. It was a confronting and not very positive experience, and so I felt quite nervous in the lead up to this scan. But, in a great answer to prayer, this time around couldn’t have been more different.
When we arrived at the practise, we were given a pamphlet to read which explained the purpose of the 18-20 week morphology scan, and what health conditions it may identify. It also had a section about what the next steps for the doctors and parents would be if a health condition was detected. I wish we had been given this sort of thoughtful resource the first time around! Then we met the specialist doing the scan, who it turns out is a Christian with whom we have quite a few mutual friends. He was gentle, thorough and helped make the whole process quite enjoyable.
It was a great relief to find out that neither twin has any sign of congenital heart disease. Even as Gus and I sat and watched the screen, we could tell that their hearts looked “heart shaped”. We are very thankful to God for those friends and family who had been upholding us in prayer throughout the weeks leading up to the scan, and we praise God for the outcome.
So for now, we are preparing for the twins arrival and settling in to life as a family of 5. We hope that you have had a very blessed and joyous Christmas, celebrating the birth of the Lord Jesus with family and friends. And a very Happy New Year, trusting our Father with whatever lies ahead!
“For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counsellor, Mighty God, Everlasting Father, Prince of Peace. Of the greatness of his government and peace there will be no end. He will reign on David’s throne and over his kingdom, establishing and upholding it with justice and righteousness from that time on and for ever. The zeal of the Lord Almighty will accomplish this.”
It’s hard to believe that it’s been a year since our little girl entered the world! But it is, and what a joyous year it has been.
Hannah’s definitely not a little baby anymore. She has taken to eating solids like a duck to water, can stand up confidently without holding on to anything, loves dancing and listening to music, loves reading books and is understanding more and more every day. Over the last week she’s even taken a couple of unassisted steps! I feel like I always have my camera at the ready, just in case she decides to take her first confident steps. They’re definitely not far away.
When Hannah was born, we weren’t sure what this first year would look like. Would she even still be around now? Would her surgeries have gone ahead successfully? Would she have other underlying health problems that we didn’t know about already? And how would we go as first time parents?
There is so much to celebrate. Hannah’s over halfway through her expected surgery plan, and she’s developing and growing just as well as any other 1 year old. And she’s done all this with that cheeky smile we’ve grown so fond of.
So we decided to go big to celebrate her birthday. Birthdays are generally great causes for celebration, but for Hannah it feels even more so. Her party included a jumping castle, lots of good food from the many nationalities present in South West Sydney where we live, and many many friends.
But we also wanted to give thanks to the greatest live giver, our Father in Heaven.
So we planned a combined baptism and first birthday party. It was a wonderful celebration of just what Christ Jesus has done for us, including Hannah, in his death and resurrection. Gus and I, along with Hannah’s godparents, were also able to publicly promise to raise Hannah knowing God’s great love for her, and teaching her his word.
Hannah’s godfather Eduard prayed a beautiful prayer that helped focus the day on what is most important to us.
You are majestic, you are all powerful, you are holy, you know all things, you are love, you are full of Grace and Mercy, you are just.
You are the creator of all the universe, and you are sovereign. What does that mean, not one sparrow falls to the ground unless you allow it to happen.
Paraphrasing the Psalmist:
You created Hannah Fleur’s inward parts. You knited her together in Sarah’s womb.
We praise you Lord for Hannah Fleur is Fearfully and Wonderfully made.
Wonderful are your works. Our souls’ know it very well. Hannah’s frame was not hidden from you, when she was made in the secret place, when she was woven in the depths of the earth.
Your eyes saw Hannah’s unformed body. All the days ordained for Hannah were written in your book before one of them existed.
May, they be good-days.
We pray that:
She would grow up healthy and strong
That she might know you early in her life
That she might experience your Grace and forgiveness
That she might put you first in everything
That she will be a joyful and happy girl
That she will be beautiful as a child and as an adult not only outwardly but in her inner self
That she will value Godliness and holiness as opposed to the values of this world
For we know that one liveth long who liveth well for your praise and honour.
We pray for her Godparents; that we may in our lives and in our interaction with Hannah point her to Jesus.
We pray for her parents, that you will give them Godly wisdom to raise her up in the Grace and knowledge of you.
We pray for the Grandparents and relatives of Hannah. That she might know what family is like.
We pray for us as a church that we may be her fellowship knowing Jesus and letting Jesus be known.
This we ask in your name.
It is a paraphrase of Psalm 139, which is a beautiful testament to God’s creating and sustaining love. I’m thankful Eduard doesn’t mind me sharing his prayer with you, as I would like to remember it and continue to have it as my prayer as Hannah grows up.
Sing to the LORD, praise his name; proclaim his salvation day after day. – Psalm 96:2
I’ve never really been into Valentine’s Day. It’s always seemed a little fake, and usually passed with very little fuss in our household.
But now we have a reason to mark not only the day, but the whole month! HeartKids NSW and HeartKids Australia, the charity which supports kids living with congenital heart disease (CHD) and their families, uses the month of February to raise awareness about CHD, with Valentine’s Day (renamed Sweetheart Day) at its heart (excuse the pun…).
I’ve written previously about Hannah’s heartbeads, which help us document every step of her hospital stays. They’re sponsored by HeartKids NSW. They also provided us with a goodie bag of things when we got to hospital – some pressies for Hannah, snacks, and info about CHD and how HeartKids can help. And each week, one of their Family Support Coordinators spends time at the hospital, being a friendly person to talk to.
Many HeartKids people have children with CHD themselves, so they know what the journey we’re on is like firsthand. I’m sure they have been a light in the dark fog of diagnosis / hospital stays to many parents, as they were when I stopped in for a cuppa and a chat. So it feels natural to want to raise the profile of such a great organisation, one which we are thankful to God for.
One way I’m doing that is by joining in on the HeartKids photo challenge. Each day, I’ve used their prompts to post a photo on Instagram. Here are the first few…
So far I’ve found it a fun process to plan and take my photos (though Gus was pretty happy when I withdrew my request for him to mow a heart shape into our front lawn…). I plan post an update with more photos later in the month, which will also be motivation to continue the challenge!
For now, why not take a moment to have a look at the Sweetheart Day website, gain some more info about CHD and if you want, take part in some of their Sweetheart Month programs. Particularly keep an eye out for them on Sunday 14 February selling heart themed items at local shopping centres and other spots to fundraise.
And a Hannah update – you can tell from the photos that she’s continuing to grow and develop tremendously well! She’s a bundle of fun – getting quite proficient at ‘bum shuffling’, pulling herself up on things, chattering away and demolishing food. Hannah’s even gained 6 teeth since the week of Christmas, so now has 8 big chompers, which definitely help with the food demolishing! She continues to bring us great joy and takes my breath away on a daily basis.
Please give thanks for…
HeartKids and their great work supporting families and kids with congenital heart disease
Hannah’s continued good health and development
Our Lord Jesus and his life giving gospel
Please pray for…
HeartKids and their campaigns throughout the month of February
Hannah’s continued good health
For more people to come to a saving knowledge of the Lord Jesus, who provides eternal hope and comfort despite uncertainty, grief and death
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. – 1 Corinthians 4:16-18
“Hannah’s heart looks perfect! … Well, not as perfect as if she had 2 functioning ventricles … But perfect for her!” I do enjoy Hannah’s cardiology appointments – especially when they’re as positive as our most recent one!
Hannah’s cardiologist is a gentle, kind man who also happens to have a daughter named Hannah. He is able to explain things in a way that we can easily understand, and as we found out last time, knows all the words to Peppa Pig: Grampy’s Dinosaur Park (though he said he’s never actually watched it, just listened as parents played it to distract their kids during their scans!).
But do you know what I like even better than her cardiology appointments? Not having them for 6 months! As Hannah’s recovery has gone so smoothly and the shunt is doing its job well, we don’t have to see him again before the middle of next year. And between now and then we’ll only have one hospital check up to track her growth and development. Music to our ears!
So Hannah is able to get on with the job of being a baby. She’s got a few more teeth poking through, is making lots of comical noises, and can pretty much roll over consistently. She’s been trying to pull herself up on things too and enjoys standing, with only minimal support from us. Very soon she’ll be on the move I think. It’s such a joy to see her really interacting with us and our world.
Preparing for Hannah’s first Christmas has also helped me reflect on God’s faithfulness to us this year. He has indeed been so faithful, in so many graciously answered prayers.
But what if Hannah’s surgeries, recoveries and medical stuff hadn’t gone so well? What if we didn’t have our little one around to celebrate more of her milestones? Would God have still been faithful to us and to Hannah then?
Christmas reminds me that yes, God is with us, he has been faithful, so wonderfully faithful. Our saviour Christ Jesus came as baby, he walked on earth as a man, and he died and rose to give us life with God.
We thank God for how we are finishing the year with Hannah, happy, smiley and healthy. But more than that we thank him for sending Jesus.
Merry Christmas and a Happy New Year! Love from us xx
Please give thanks for…
Hannah’s continued good health and development
Time to celebrate Jesus’ birth at Christmas with our friends and family
God’s many answered prayers this year
Please pray for…
Our trust to continue to be in Jesus and not ourselves
A safe and enjoyable holiday season
Those children and families at Westmead Kids who won’t be home for Christmas
For to us a child is born, to us a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. – Isaiah 9:6
10 And the angel said to them, “Fear not, for behold, I bring you good news of great joy that will be for all the people. 11 For unto you is born this day in the city of David a Savior, who is Christ the Lord. – Luke 2:10-11
In the last trimester of my pregnancy my sister and close friends planned a wonderful afternoon where I gathered with friends and family to celebrate Hannah’s impending arrival.
So much uncertainty lay ahead. When would the baby arrive? Would I be able to give birth naturally, or would a caesarian be needed if the baby became distressed? What would the first hours of our child’s life be like? Would I get to hold her? Would the prenatal diagnosis be correct? Did she have any other health issues the doctors had missed? When would her first surgery go ahead? How would Gus and I cope with the stress, would it bring us closer or push us apart? When would we get to bring our little one home, and what would that be like?
To commit all of those things to God, on that afternoon, my mother in law prayed. Here are her words …
Dear Heavenly Father, Lord of life,
We praise you and rejoice with Sarah as we gather to celebrate the new life she carries within her.
This little baby is already a cherished member of the H and C families so we ask you, Lord, to keep both mother and child safe in these last weeks before his/her birth.
Father, we know that, barring a miracle, this babe will face many challenges from the day he or she is born into this world, and so we ask your protection over Sarah and her baby, that Sarah will have a safe and easy birth, and the babe an uneventful delivery.
We also pray that you will set in place the specialist teams of nurses and doctors that you want to care for them, and that you will oversee the infant’s surgeries and recoveries.
We pray for baby C that he or she will grow to be a strong baby and toddler, unafraid of the battles ahead, hedged in and undergirded by your precious, life sustaining mercies and love.
We thank you for the love that Angus and Sarah have for you, and for each other, and we ask that you will guide them, and grant them every help, to raise this precious child to know you and to love you.
We pray that Angus will be granted everything he needs to support Sarah in these days before birth, and through the birth, and that you will tie cords of love that cannot be broken around father, mother, infant and yourself, joining all together now and forever.
We pray for strength through restless nights;
We pray for patience though difficult days;
We pray for an ever deepening faith in the face of anxieties;
We pray for peace and hope through you in each new day and
We pray for joy in you and in each other.
We also pray, Lord God, For grandparents Lionel and Jen, Robert and Lorraine and step grandparent, Pamela; For sister, Kate;
For Angus and Sarah’s church and wider Christian fellowship and their large family of friends. That you equip us to be ready and willing to serve Angus and Sarah and baby C in whatever capacity they need;
That you make us to be wise in our endeavours for them, considerate, self sacrificing, compassionate and loving, that we work together to make a gentle pathway for this young family.
Above all, we offer our sincere thanks and praise to you who blesses us beyond measure.
May Angus and Sarah receive this child as your precious gift, and raise this child to your glory, and all the while may you keep Angus, Sarah and baby C safe in your loving care, now as they await their babe’s arrival, and also throughout their lives into eternity.
We pray all these things in the name of Jesus Christ your only son, who is our Lord and Saviour. Amen
Our loving heavenly Father has answered our prayers so quickly and kindly.
We have a beautiful, thriving little girl who hardly stops smiling. Her arrival was safe and fairly smooth for both her and myself. She was delivered in the secure walls of the hospital, straight into the hands of capable and caring specialists. Her original diagnosis was confirmed, and her first surgery went ahead quickly. We were able to bring her home a week later after a smooth recovery. She has grown and developed into a content and delightful infant, bringing so much joy to our lives. Her second surgery, despite being delayed a number of times, went ahead successfully and she recovered with only a few small bumps in the road. She has been ably cared for by doctors, nurses and other medical professionals throughout her life. And we have again seen her return to her smiley, wriggly, extroverted self – now sitting well, chuckling, mostly enjoying solids, almost rolling over and she’s got two sharp little teeth!
Throughout everything we have been loved and supported emotionally, practically, prayerfully by countless family and friends.
There’s no doubt that the last 18 months have been the most stressful of our marriage. Becoming parents has certainly been a rollercoaster ride. But, only through God’s strength, Gus and I have grown in our love and trust for each other and our marriage is stronger as a result.
It is hard to put into words how thankful I am for these answered prayers. I am deeply in awe of God’s graciousness and kindness to us. And for his blessing of Hannah, every day she takes my breath away.
That’s not to say every prayer has been answered how we expected, or how we had hoped at the time. And who knows what God has planned for our and Hannah’s future. They might not always be our plans or hopes. But, these months have shown me time and time again that God’s timing, his purpose, his will and his design are perfect.
My heart knows that well.
Please give thanks for…
Answered prayers and those who have prayed for us
Hannah’s continued good recovery from surgery
Please pray for…
Hannah to grow to know and trust Jesus as her Lord and Saviour
Wisdom for Gus and I as we seek to love and look after her
Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus. – 1 Thessalonians 5:16-18
One way Hannah is able to document her journey with Congenital Heart Disease is through collecting heart beads.
Each bead is colourful and distinctive and represents a different procedure or event in Hannah’s treatment. They’re generously donated by the Northern Beaches Social Riders and HeartKids. Some kids end up with lengths of beads that can wrap around their hospital bed numerous times! And one mum said she’s divided her daughters beads up into different years because they are just too heavy and long otherwise.
As Hannah was discharged quite quickly the first time around we forgot to pick up her heart beads, so this time around we had quite a backlog to organise!
The perfectionist in me wants to make sure Hannah’s beads are 100% accurate. But I know that’s unrealistic given the number of procedures she had while in hospital. For example, on a single day in ICU she might have 4 or 5 blood tests! So getting the vibe of her journey even if it’s not completely accurate has been my aim.
Here are Hannah’s up to date heart beads:
And one short length (which is actually upside down in order):
Pink spotty = chest x rays
Smiley face = a good day
Red balls = blood tests
Blue square = pacing wire removal
Fish = a procedure, in this case her arterial line being removed
Owl = extubation
Green heart = a complication, in this case some extra bleeding after her surgery
Purple cube = time in PICU
I hope that when Hannah’s older her heart beads will be a fun and helpful tool for her to process living with a heart condition. To help her better understand her brave start to life and to give her confidence in herself and the scars on her body. She can then choose whether she keeps them on display or shares them with others (maybe as show and tell?) or stores them privately.
Please give thanks for…
The heart beads program and the aim to help children actively process their experiences with congenital heart disease
Hannah’s journey so far and her continued good recovery
Please pray for…
Wisdom for Gus and I talking with Hannah in future about her heart condition
Hannah to find her security and identity in Christ, and not in her physical body
For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. – Psalm 139:13-14