Sweetheart Month

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.

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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.

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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…

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Can you tell which one is which? From left top to bottom: 1. Something red, 2. Heart shape, 3. My inspiration and, right top to bottom: 4. Love is… 1 Cor 13:4-7, 5. Breakfast and 6. A selfie!

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 

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Merry Christmas! 

“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.

Hannah’s first Christmas tree (you can tell she’s not crawling yet by how low some of the ornaments are!)

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

Answered prayer

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.

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Feeling very pregnant and very excited!

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!

Home from hospital, Hannah's begun enjoying solids. Her current favourites are pear, banana, and Lebanese pickled turnip (!)
Home from hospital and into solids. Her current favourites are pear, banana, and Lebanese pickled turnip (!)

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.

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Story time with my mother in law, Hannah’s grandma Lorraine

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

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:

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And one short length (which is actually upside down in order):

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  • 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
 
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Did you know CHW is a registered art gallery? This is one of my favourites
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One nurse had a fun way to keep a sad little boy in PICU entertained
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Having an MRI must be scary for kids, hopefully being able to practice helps
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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