Hannah’s Heart Beads

One way Hannah is able to document her journey with Congenital Heart Disease is through collecting heart beads.

IMG_0191Each 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 


Home again home again 

The hospital discharge train started gathering pace once Hannah could feed well again and was off the continuous monitors. What a joy it is to have our little girl home!


Hannah having an echocardiogram to prepare for discharge
 Hannah is still snuffly and coughing as a result of her virus, but her heart and chest wound are doing well. There’s not much the doctors can do for the virus except let it run its course, and we can see it gradually lessening each day. It does seem to make her very clingy and not so keen on sleeping in her cot, but we’re happy to oblige the extra cuddles! 


Let’s go home daddy!
 For now, we’re getting used to Hannah’s post operative instructions. To protect her chest and encourage her wound to heal the physio suggested we imagine we’re carrying a watermelon whenever we pick her up. Hannah’s a whole lot more wriggly than a watermelon, but I’ve still found it a helpful comparison! There’ll be no tummy time here either for about six weeks. 

Hannah’s also on a couple of new medications to help her body adjust to her new heart circulation, keeping blood pressure stable, reducing fluid retention and making sure her blood doesn’t clot. At the moment giving them to her is a bit of a battle, but we hope in time she will get used to it. One in particular is neon yellow, I think everything will be stained for the foreseeable future! 

It is such a relief to have 2/3 of her surgery plan complete. God willing, we won’t be heading back to hospital again until she is 3 or 4. That will be for Hannah to undergo the Fontan procedure. I imagine that time in hospital will again be both easier and harder then this time. 

Though the last six months have been stressful, exhausting and very emotional, our Lord Jesus Christ has remained our constant source of peace and hope throughout. It is hard to put into words how thankful we are to God for swift, kind answers to prayer. We continue to trust him for whatever lies ahead. 

Please give thanks for… 

  • Our beautiful girl and that we are once again home with her 
  • The medical team at the Children’s Hospital at Westmead 
  • So many prayers answered 

Please pray for… 

  • Hannah’s continued recovery, for her chest to heal quickly and without too much discomfort 
  • Wisdom for us caring for Hannah at home particularly in the first few weeks of reduced activity 
  • Our trust to continue to be in Jesus and not ourselves 

Praise the Lord. Praise the Lord, my soul. I will praise the Lord all my life; I will sing praise to my God as long as I live. – Psalm 146:1-2 

Hospital glimpses

Hospitals are funny places. Your whole world shrinks into several square metres, restricted by the length of tubes and monitoring cables and structured around observations, doctors visits and medicine intervals. You can easily lose track of time, and become oblivious to what’s going on in the outside world. 

How do you avoid going stir crazy? For us we’ve tried to go for a walk when Hannah’s asleep or someone is with her. Here are some of the things we’ve found on our travels… 

A place to be quiet, reflect and pray
Did you know CHW is a registered art gallery? This is one of my favourites
One nurse had a fun way to keep a sad little boy in PICU entertained
Having an MRI must be scary for kids, hopefully being able to practice helps
Not sure who this guy belongs to but he was keeping an eye on the carpark
I look forward to our Hannah playing here soon!
Down the back of the hospital is the site of Rev Samuel Marsden’s mill and farm from 1812

Hannah is steadily improving. It’s wonderful to see her wanting to sit up, chew on things and watch people again. And the smiling! Oh the smiling. The nurses seem quite smitten with her when she flashes them her cute open-mouthed smiles. She’s now fully breastfeeding too. These are great answers to prayer. However, she still doesn’t like taking her medications so her has NG tube remains. Once her virus goes and her throat feels better I think we’ll be on the home stretch. 

Please give thanks for…

  • Hannah’s continued improvement
  • Her smiles and the joy they bring
  • Comfort and certainty we have in Jesus

Please pray for…

  • Wisdom working out what causes Hannah pain or discomfort 
  • Her throat to heal and be rid of the virus
  • Rest and refreshment for us

But I trust in your unfailing love, my heart rejoices in your salvation. – Psalm 13:5 

A few bumps in the road

 It’s been a busy couple of days! Hannah was discharged from ICU and moved to the cardiac ward. Overall she’s doing well. 

On her way to the ward

As sedation has worn off Hannah’s become more alert which is wonderful. But with less sedation she is more uncomfortable. Her head, throat, chest and tummy all seem to be hurting at the same time for different reasons. Getting the balance of pain meds right can be tricky – and she’s not able to tell us exactly what’s wrong or how things feel.

It’s easy to feel impatient – I want Hannah’s recovery to be textbook smooth so that we can take her home asap. But I have to keep remembering the end game – a happy, healthy Hannah. That might take time. Actually I’m sure it will.

One hiccup is Hannah seems to have picked up a respiratory virus. When combined with the breathing tubes she had it means her throat is super sore, her cries are very croaky and she doesn’t want anything near her mouth. Her naso-gastric (NG) feeding tube was taken out when she seemed to be tolerating a bottle or small breastfeeds, but 12 hours later it was put back in as she couldn’t keep anything down. While I initially was disappointed at the step backwards, as soon as the tube was back she settled, kept her pain meds down and could have a good sleep. I sat watching her peaceful face for some time after I should’ve gone to sleep myself!


Hannah’s ward is under the sea themed
Being on the cardiac ward does mean a bit more freedom. One of us is able to stay next to her bed at night on a fold out couch. At the moment we’re taking it in turns so that we both can get a proper sleep at home every second night. We’re also able to dress her in her own clothes and yesterday could take her for a walk down the corridor. Usually Hannah’s really interested in people so I wonder if she finds the hospital bed boring! We’ve brought in some toys and books to keep her occupied. These little bits of normality are precious.
Please give thanks for…

  • Hannah’s recovery so far and that she’s now more alert
  • The glimpses of normality we have back now that Hannah’s out of ICU
  • The “pamper the parents” day at CHW and the break many could have from hospital life

Please pray for…

  • Patience and trust in God for us when Hannah’s recovery doesn’t go as smoothly as we’d like
  • Continued wisdom for the medical team looking after Hannah
  • Good sleep for us all 

(Jesus said) Come to me all who labor and are heavy laden, and I will give you rest. – Matthew 11:28 

On the mend

No more delays – the surgery went ahead!!

Hannah was delayed a couple of hours, but surgery started around lunchtime and we were able to see her in the early evening. Her surgeon is happy with how things went and her Glenn Shunt circulation is now in place.

We are doing well, feeling exhausted but relieved. When we took her in I did ok until the anaesthetist came to take Hannah to theatre. We decided Gus would go with Hannah, so while he donned some scrubs I had a quick cuddle with my little lady. Then we prayed together and off they went. I felt a little awkward bawling in the middle of the post-operative ward for kids who have just come out of day surgery, but thankfully a lovely retired nurse/older volunteer came to chat and provide tissues till Gus came back.

During Hannah’s surgery, we tried to keep occupied by going to the local shopping centre. It worked pretty well – I even managed to get my hair cut, something I haven’t done since before Hannah was born! The hospital sent us with a pager that gave us a 40 min window to get back to the hospital for when she’d be on her way to PICU.

Our little one in her big bed

Seeing our little girl with all the tubes, monitors and the operation incision is hard, because Hannah is generally so smiley and happy. I had also forgotten how overwhelming all the different noises and smells of the hospital can be. But slowly slowly Hannah came out of sedation over 24 hours. She has been a bit agitated, a combination of the massive headache she has from the bypass machine and change in her hearts circulation, as well as all the tubes and wires that are currently attached. But maybe the biggest thing is she’s missing her milk. Most of those things will sort themselves out over the next few days.

Her breathing tube came out first meaning we were able to have a cuddle. The chest drains and most of the other tubes and wires came out later ready for the move from PICU to the cardiac ward. It’s a lovely bit of progress towards heading home! But we will take each minute/hour/day as they come.

Her first bottle after fluid restrictions were decreased was very well received!
Hannah’s first small bottle after fluid restrictions were decreased was very well received!

Our friends Kat, Mick and Sophie have also had a big couple of days. Sophie was operated on the day before Hannah, and it also went well. She’s out of ICU which is wonderful. Please continue to pray that she’d heal and recover smoothly.

Please give thanks for…

  • Hannah and Sophie’s surgery going ahead successfully and her recovery so far
  • The medical team looking after her, their skill, wisdom and care
  • Our hope of new life in Jesus

Please pray for…

  • Hannah and Sophie’s continued recovery
  • Lots of energy and good sleep for Gus and I
  • Comfort for other families in PICU, there are children here with trauma and terminal illnesses as well as others recovering from surgery

For what we preach is not ourselves, but Jesus Christ as Lord, and ourselves as your servants for Jesus’ sake. For God, who said, “Let light shine out of darkness,” made his light shine in our hearts to give us the light of the knowledge of God’s glory displayed in the face of Christ. But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. – 1 Corinthians 4:5-7

More surgery, more friends

The last few weeks at home have been wonderful – Hannah is now sitting up by herself for short periods and becoming very interested in food! Once we’re home from hospital we will see what she thinks of solids. She has also remained in good health.

Gus received a soggy card from Hannah for his first Fathers Day :)
Gus celebrated his first Fathers Day with a soggy card from Hannah 🙂

We are now very close to Hannah’s next operation going ahead. It has been delayed once more, but her surgeon has said that it will not be moved again which is a relief.

Thank you for continuing to support us with love and prayer. I can’t explain how encouraging it is to read your comments or texts or emails or chat when we see you in person. God has been so kind in providing us with you all. Thank you.

As you continue to pray for us, can I be bold and ask you to add another family to your prayers this week?

In God’s providence there will be another Moore Theological College family spending time at CHW with us. In July, Kat and Mick welcomed beautiful little Sophie into their family. Sophie has down syndrome and two holes in her heart (approximately 50% children with down syndrome also have a heart condition, which you can read more about here). She is scheduled to have her operation around the same time as Hannah, by the same surgeon.

Kat, Mick and Sophie
Kat, Mick and Sophie

Knowing another child being operated on at the same time is a pretty unique thing to happen once. For it to happen twice is quite unbelievable (read about our other college friends who’s daughter Evelyn was operated on before Hannah last time here). But just as with everything else in our lives, we believe God is sovereign and that this timing isn’t a mistake or coincidence.

Kat and Mick share the trust we have in Jesus, and we are so thankful to God for his kindness in providing us with each other for encouragement and support.

Hopefully when I write next we will be looking after our little one in PICU (paediatric intensive care unit) following her surgery. In the mean time, thank you for continuing to pray for us.

Please give thanks for …

  • Kat, Mick and baby Sophie – for their family and life in Jesus Christ
  • Hannah’s continued good health and development
  • Our friends and family and the way the love and care for us

Please pray for …

  • Hannah and Sophie’s operations to go ahead smoothly and in God’s timing
  • Our trust to continue to be in Jesus and not ourselves
  • Good sleep the night before the operation and that Hannah would not get distressed during her four hours of fasting before the operation

 And we know that for those who love God all things work together for good, for those who are called according to his purpose. – Romans 8:28

Waiting waiting waiting

Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble. – Matthew 6:34

Only a few weeks ago, I thought we might be home by now. But I am a slow learner! Hannah’s operation has now been delayed 3 times, most recently on Thursday afternoon. It is now scheduled for mid-September, several weeks away.

The surgery lists are fickle – there have been other babies and children needing their surgery more urgently than Hannah. That in itself is a blessing, Hannah has been well and her oxygen levels have remained good, meaning her shunt is doing its job. Sometimes I think it could be easy for us to feel resentful of the other children and families who have taken Hannah’s place, or of the system itself. The continual changes do use up lots of emotional energy, and I can’t help but be apprehensive when ‘no caller ID’ pops up on my phone as that’s usually the hospital calling. But we’re thankful that God has provided the system that we have, and for those who have the unenviable task of managing all the different patients.

The longer passage from Matthew’s gospel that the verse above comes from was part of my daily devotional several weeks ago, and since then I have tried to keep it front of mind.  I think it rings true for how we’re currently feeling – there’s no use worrying about what might happen and when, what’s more important is to trust that God is Lord over all of it. That is of great comfort.

As I had already started packing last week I thought I would share some of the items which make our hospital stay a little easier…


Lite n’ Easy meals: these worked well last time, can be stored easily at the hospital and means that we have regular meals which is important in ICU where it’s hard to keep track of time!

My Bible and devotional book: Stott’s three section plan for the year in “Through the Bible, Through the Year” started last week, and so far I have found it helpful to have a set passage and commentary to read each day.

Coffee supplies: we couldn’t go away without the Aeropress, hand grinder and some good beans! This is Gus’s forte and it’s nice to have a routine each morning.

A snuggle rug: when Hannah first comes out of surgery I will be expressing and she will be fed through a nasal gastric tube again. I plan to share the snuggle rug between Hannah and I so that we can enjoy each other’s scent. Something to help before we’re able to have cuddles.

Pink hair towel: a creature comfort to use alongside the hospital towels.

Black and white bag: I lost one set of tubes for the expressing pump last time (whoops!), and so using a distinctive bag helps make sure I keep track of my set and labels for storing Hannah’s milk.

Lip balm and moisturisers: to help with the dry air of the airconditioning.

A portable battery charger: prolongs our phones on during the day.

Please give thanks for …

  • The extra time that we’re able to spend with Hannah before her surgery
  • Hannah’s good health and development
  • Our friends and family and their ongoing love and support

Please pray for …

  • The operation to go ahead at the right time
  • Hannah to continue to be healthy
  • Our trust to be in God’s will for us and Hannah and not our own

This is the day that the Lord has made;
    let us rejoice and be glad in it. – Psalm 118:24