Trusting God

I’m not generally an anxious person. I don’t find myself dwelling on things for too long, I like being busy and working to deadlines. But one of my continual life lessons being on this journey with Hannah has been learning to trust God more when I do feel anxious about her surgery and what might happen in the future. 

It’s humbling. Learning I’m not in control, I can’t fix Hannah myself, I can’t stop her pain and discomfort, and I can’t even decide when her surgery happens! There’s nothing like handing your child over for a risky, complex operation to make you feel helpless. 

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Hannah about to have her first heart surgery at 2 days old. The memory of them wheeling her away is still very clear in my mind.

The feeling of not being in control has been made so aware to me in recent weeks as we worked towards a date for her surgery, only to have it delayed a couple of days out. Now we could be in hospital for Christmas, or it could be delayed again. For Hannah’s last surgery we were delayed 5 times for a total of 5 weeks so this is a very real possibility. Along with the emotional adrenalin let down, being in church ministry the next couple of months are our busiest with lots of fun things on for Christmas and our youth camp in January. 

So why doesn’t God do things when I think is best? Surely it’s the right thing for surgery to go ahead as soon as possible! Surely my plans as Hannah’s mum are the best, right? 

I listened to a podcast recently where another mum spoke about feeling this way too, and even more so. She’s had three children, but sadly two died as babies from a genetic disorder. The interviewer asked her how she was about to trust God in the midst of such uncertainty and pain… 

“Trust doesn’t look like you never have anxiety about it. Trusting God is every time that anxiety rises up in you, you go to God with it. That really helped me because I think it’s unrealistic for us as mums to think we’re just going to live a totally worry-free, anxiety-free life, in regard to our children, so the real issue of trusting God is not that we never feel anxiety, it’s what we do with it. Do we simmer in it? 

Do we strategize to somehow fix it ourselves or do we come to God with it and say, “You must act. I’m fully depending on you to act on my child’s life, as well as to give me the peace I need to get through this day. Lord, you can probably expect that I’m going to be back here tomorrow. I’m just going to keep coming back to you to give me what I need and to work in my child’s life.” 

Her answer brought me to tears. I definitely feel the temptation to trust in my own planning or skills, as if organising multiple activities to keep Hannah occupied in hospital and turning up early to all her appointments and reading everything I can about her condition and the surgery will make everything go to plan. 

Sure those things might help, but there’s no certainty they will. Life doesn’t work the way we want it to just because that’s what we want. 

But what I can have certainty in is God. I can have certainty that putting my trust in God and knowing he is powerful and able to act in the best way possible for me, and for Hannah’s life, is what will sustain us long term. Things might not pan out the way I’d like them to, but I can trust that God knows better than I do about these things. He has the bigger perspective in mind, and there are multiple things he might be teaching us through this experience. Teaching us to recognise our own mortality. Teaching us to value what’s important in life. Teaching us to look to him when things are uncertain. Teaching us to be able to love others better when they go through tough circumstances. And teaching us to look forward to heaven, which we can have certainty in not because of ourselves but because of Christ’s death on the cross. 

I’ve been reminded of this recently from God’s word too, in our series on Isaiah at church. Isaiah is a book in the Old Testament where Judah had been conquered and taken off to exile in Babylon, with no idea what the future held. Isaiah told them that one day, a Messiah would come, who we know was talking about Jesus: 

Surely he took up our pain
    and bore our suffering,
yet we considered him punished by God,
    stricken by him, and afflicted.
But he was pierced for our transgressions,
    he was crushed for our iniquities;
the punishment that brought us peace was on him,
    and by his wounds we are healed.

Isaiah 53:4-5 

Jesus willingly suffered pain and death in my place, to bring me back into relationship with God. I don’t have a God who is distant or unknowable, he knows my experience intimately. That brings me peace and comfort no matter the circumstances I face. 

Learning to trust God more isn’t an easy process. I don’t think I have some special strength or ability to do it better than others. It’s a daily thing I need to remind myself to do – to take things to God in prayer, to remember what he has revealed to us in his word, and be encouraged by the support of others. And I’m sure it’s something I’ll have to keep learning to do until I get to meet Jesus face to face!  

Please pray for… 

  • Hannah’s surgery to go ahead in good time, before her oxygen levels drop to a critical level. 
  • For peace in trusting God daily with my own life and that of my children. 
  • Those other families currently in hospital, to have strength and perseverance in suffering and uncertainty. 

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 

1 Peter 5:10 

 

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Fontan explained

The third step in Hannah’s heart surgery plan is what’s called a Fontan procedure. The Heart Centre at Westmead, who Hannah is looked after by, explain it like this…

“The heart normally has two sides, each with a collecting chamber (atrium) and pumping chamber (ventricle). The right side of the heart collects blue (low oxygen) blood returning from the body. This blood is pumped to the lungs to collect oxygen. The left side of the heart collects pink (high oxygen) blood returning to the heart from the lungs and pumps it to the body.

In some hearts, one of the two ventricles may be underdeveloped. In this case the ventricle is considered to be functionally single (and usually receives a mixture of pink and blue blood). In general it is not possible to replace or rebuild an underdeveloped ventricle, so management is focused on making the best use of the parts of the heart that are there. The way this is done when the underdeveloped ventricle cannot be used as a pump is to create a ‘Fontan Circulation’, named after the person who devised the first version of the operations designed to achieve this.

The objective of a Fontan Circulation is to direct all the blue blood straight to the lungs, without going through the heart. The heart chambers (and single ventricle) are used to pump blood returning mainly from the lungs to the body. Once the Fontan Circulation is completed it allows close to normal levels of oxygen in the body to be achieved, improving well-being and considerably improving protection against certain complications such as stroke.”

It involves putting a goretex tube in to redirect her circulation like this…

Normal heart

For Hannah, this will be the most efficient way for the side of the heart that she has (the left) to function. It should give her back usual energy levels, and the best prognosis at living a long life. It’s not an easy operation, it lasts more than 5 hours, but it is one with really good outcomes and they do it fairly regularly for a range of congenital heart conditions.

We have met with Hannah’s surgeon and are now waiting to see when the surgery goes ahead. We expect she’ll be in hospital for 2-3 weeks, first a couple of days in ICU and then time on the ward. One of the common after affects of this open heart surgery is fluid retention around the lungs and abdomen, which can influence how long it takes kids to recover.

From chatting to our surgeon, this is a harder surgery to do and recover from than the two Hannah has had already. But she is a good candidate for it, generally healthy and her recoveries for the last two have been smooth which all bodes well.

In all this we are keeping a realistic expectation that it could be delayed (due to no ICU bed or another child deteriorating faster than Hannah). Thanks for continuing to pray and support us during the waiting!

You can read more about the Fontan here or here.

Please pray for…

  • Her surgeon, cardiologist and cardiac care team who are overseeing the surgery, for wisdom and energy for them in these long complex operations.
  • That we would take our anxiety to God in prayer, knowing he is in control and his timing is right.
  • For wisdom loving Hannah and helping her understand and process what’s going on and why, especially as she recovers.

Trust in him at all times, you people; pour out your hearts to him, for God is our refuge. – Psalm 62:8

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

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