Another step closer to Fontan

A couple of weeks ago Hannah’s heart catheter went ahead smoothly, so smoothly we didn’t have to stay overnight in hospital! She was first up that morning, which meant a super early start, but Hannah seemed to enjoy the novelty of getting up before Daddy and the twins were awake. She even said to me “why don’t we stay at the hospital tonight? We haven’t done that before!” I hadn’t even told her we probably would be staying overnight, but that excitement at trying something new did put me at ease. We had read her book earlier in the week, so Hannah now has some knowledge and language to use about her “special heart” which needs extra help from the doctors to help her grow big and strong.

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Hannah keeping busy while we waited for it to be her turn

The waiting in hospital is never easy, especially when you have a hungry 3 year old (she fasted from midnight). But Hannah did really well, and the waiting room was set up to keep her occupied. Her Godmother Nat had also put together some great activities which kept her distracted from her tummy grumbles haha. And each step of the way things being new helped, she loved lying down in the bed and being wheeled around.

The procedure took a couple of hours, and while I waited I read a really challenging book – “Devoted” by Tim Challies, stories of men throughout history and their Godly mums. I was challenged to think about my approach to being a mum, and whether I truly trust God for whatever lies ahead for all of my kids. It was a timely read!

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Even Hannah’s pillow got a hospital band!

After a couple of hours she was back in recovery and on the ward, and her intrigue about the monitors and cords she was attached to quickly turned to frustration at not being able to move around. She had to lie flat for 4 hours to make sure the blood flow resumed normally, particularly to her leg after they went in via the femoral artery in her groin. To stop the bleeding, that had a small pressure balloon on it, which they slowly released air from over the afternoon.

While I was waiting with her I had time to reflect on how much harder the bigger surgery will be with helping her through recovery. So it was timely that a clinical nurse consultant came to visit to talk to me about that very thing! Turns out the heart centre has a team who work together to help families and the kids prepare for the Fontan surgery. I’m not sure exactly what this will look like yet – but it involves the physios, OT and psychologists / social workers. Helping us prepare Hannah for what will be days lying down! Eeeek. And for the mental and emotional side of things too. I’m so thankful that they have thought through these things and that they’re not just concerned with the physical aspects of the surgery and recovery.

But most of Hannah’s frustration at lying down dissipated when she was allowed to sit up and her dinner arrived. I want to bottle up her excitement at having dinner in bed, as it’s the only thing she’s told people about since! “Did you know, I got to eat dinner IN BED!” and “Daddy will think this is SO funny, that I got to eat dinner in bed!” Ahhh to be three. And then it was home time! She spent a week on limited activity, but wasn’t bothered by the bruising on her neck or groin which have most faded now.

Her catheter surgeon was happy with how the catheter went, they were able to collect all the information they needed, and her heart seems suitable for the big surgery to go ahead. And after meeting with the surgeon who operated on her when she was a baby, the plans for her Fontan are in place. It is tentatively scheduled for the end of this year, but we understand it can be pushed back multiple times.

IMG_6349The other thing we brought home was some extra Heart Beads to add to Hannah’s long string. There’s one for the catheter, plus the blood test, hospital admission, having the monitors on, the echocardiogram etc and even one because it was a “very brave day” haha. Hannah doesn’t really understand these yet, but I think they’ll be a helpful way to explain her journey to her when she’s older. I’ve written about them previously here.

With us, please…

  • Give thanks that Hannah’s heart catheter went smoothly and she has mostly positive memories of being in hospital.
  • Pray for wisdom for her surgeon and the heart centre team in planning her big surgery, and for us in helping Hannah process what having a special heart means.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. – Romans 15:13

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Heart Catheter

In the next week or two, Hannah is scheduled to have a heart catheter done. It’s a test that’s a precursor to the bigger surgery which collects more information about her heart from the inside. She’ll be under general anaesthetic and in hospital overnight to monitor things afterwards.

Here’s an explanation of a heart catheter from the Heart Centre for Children:

“The catheter is a fine, hollow, flexible tube, which is usually introduced into the artery and/or vein on either or both sides of the groin. Sometimes other entry sites are used, such as the arm or neck veins. The catheters are introduced through one to two millimetre needle holes.

The catheter is guided by the doctor carrying out the procedure, using sophisticated x-ray equipment. The end of the catheter is passed into the heart chambers and main arteries and veins. Blood pressure measurements and oxygen levels are measured at these points to help determine heart function.

A special fluid, containing iodine, is injected via the catheter to outline the heart chambers and blood vessels more clearly. This is called an angiogram. This is recorded on special equipment and retained on a CD. This information can be critical when deciding how best to treat abnormalities of the heart.

In some cases, special catheters with sausage shapedballoons attached, can be used to enlarge narrowings. Sometimes various plugs or coils are introduced through the catheters to close off abnormal connections between blood vessels or holes in the partition between the heart chambers. Most abnormalities, however, will still need surgery to be repaired.”

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Isn’t that an amazing? The sorts of things doctors are able to continues to astound me. It’s obviously not something that has zero risk, but should be pretty straightforward. Hannah will be in hospital overnight for monitoring afterwards. Then once the results of the test are back we’ll meet with her surgeon to discuss when the bigger surgery (called the Fontan) will be scheduled.

As with other surgeries she’s had, this one could be postponed right up to the last minute.  That is one of the harder parts of this journey, preparing mentally and physically for something and then having the adrenalin let down when it gets delayed. But, when those things happen I try to remember it’s because another child is sicker than Hannah, and needs surgery or the bed in hospital more urgently than her. I stop and pray for that child and their family, whoever they might be, which I find gives me a better perspective and compassion for that family’s experience.

Please pray for…

  • Hannah’s catheter surgery to go smoothly and collect information the surgeons need to treat her condition effectively.
  • Energy preparing and looking after her, and patience waiting if it is delayed.
  • Other families currently in hospital, for perseverance and peace in our Heavenly Father’s love.
(Image from: https://kidshealth.org/en/parents/cardiac-catheter.html)

 

Psalm 23

Recently I’ve been writing a picture book for Hannah about her heart journey. It’ll be the way we share with Hannah a little about her surgeries as a baby and why she gets so tired now.

It’s been harder than I expected, as I process my own emotions and memories of the experience, and think about how to love her in the words and photos I choose.

But seeing how far she’s come fills me with so much thankfulness and joy. Most of the book focuses on the skills she’s learnt and the things she enjoys, because of the help the doctors have given her to grow big and strong.

One thing I’ve chosen to include at the end is a paraphrase of Psalm 23 from Hannah’s favourite kids Bible, the Jesus Storybook Bible. Here it is…

God is my Shepherd
And I am his little lamb.
He feeds me
He guides me
He looks after me.
I have everything I need.
Inside, my heart is very quiet.
As quiet as lying still in soft green grass
In a meadow
By a little stream.
Even when I walk through
the dark scary, lonely places
I won’t be afraid
Because me Shepherd knows where I am.
He is here with me
He keeps me safe
He rescues me
He makes me strong
And brave.
He is getting wonderful things ready for me
Especially for me
Everything I ever dreamed of!
He fills my heart of full of happiness
I can’t hold it all inside.
Wherever I go I know
God’s Never Stopping
Never Giving Up
Unbreaking
Always and Forever
Love
Will go, too!

You can read the usual version of Psalm 23 here.

Please pray for…

  • Hannah’s upcoming specialist appointments with new doctors she hasn’t met before.
  • Patience loving each other, particularly when Hannah gets tired quickly and probably feels a bit miserable but doesn’t know why.
  • Hannah’s and our hope and comfort to be in Jesus, the Good Shepherd who sustains and protects us all.

Round 3 kicks off

Earlier this week we met with Hannah’s cardiologist for her routine 6 monthly checkup. Since 2016 each time we’ve seen him it’s been a case of checking her stats, having a echocardiogram (ultrasound of her heart), and then saying see you in 6 months!

But we have recently noticed Hannah getting more breathless after riding her bike or running around, and going purpley-blue quicker when she’s cold (both clues to her oxygen levels dropping), so we’d wondered if this time he’d say it was time to start planning her third surgery, the second part of the Fontan.

What her cardiologist identified is that her stats have now dropped to the mid 70s (for comparison, a normal heart is rarely below 95% oxygen). For Hannah, it’s been about a 5% drop in the last 6 months. Which means she needs to have the next stage of surgery. The plumbing inside all looks good though, her other organs are doing well and she’s generally in good health, so it’s not an urgent thing.

The next step is planning for her to have a day procedure called a heart catheter. That’s when a small tube is inserted into her upper leg, and another from her shoulder, which will be used to check her heart from the inside and make sure she’s a suitable candidate for the bigger surgery. Once that’s done we’ll meet with her surgeon and start planning more specifically. This all takes time, so we’re not looking at surgery being till the end of this year or start of 2019. We also know that once the surgery is scheduled, it can easily be postponed right up to the last minute if here are more urgent cases. Last time Hannah had surgery it was postponed 5 times for a total of 5 weeks.

We’re so thankful for the stability she and we have had over the last 2 years. Life has been quite busy in other ways during that time, including welcoming the twins, so it’s been a relief not to have to worry about her heart too. But we’ve always known that one day we’d be heading back to Westmead for Hannah to have open heart surgery again. And that time has sort of arrived.

Please give thanks and pray for…

  • Our beautiful girl and how she’s grown and developed over the last couple of years. She’s a smart, funny, cheeky and inquisitive thing and we are so blessed to be her parents.
  • The medical care we have access to so close to home, and for wisdom for Hannah’s care team working out the next steps.
  • Strength and patience for us in the uncertainty ahead, trusting in our Lord who knows every day of our lives already.
  • Wisdom loving and looking after Hannah, especially in terms of when and how to tell her about her heart condition and what’s ahead. (I plan to write more about this soon)

Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?Can any one of you by worrying add a single hour to your life?

Matthew 6:25-27

Sweetheart Month

Happy 2018!

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.

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Our family of 5 at the twins 1st birthday in January 

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…

CHD Facts

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

A busy few months ahead!

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.

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Hannah’s most recent heart scan

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.

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The twins gender reveal

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.

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Only a couple of weeks to go! 

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.”

Isaiah 9:6-7

 

 

 

 

 

Happy Birthday Hannah!

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.

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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.

Gus Sarah HannahHannah’s godfather Eduard prayed a beautiful prayer that helped focus the day on what is most important to us.

Dear Lord,

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.

Amen

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