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…

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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 

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The Glenn Shunt Operation

This week has been spent preparing for Hannah’s next operation – spending hours waiting in hospital for blood tests / chest x-rays / ECGs and meetings with her surgeon, anaesthetist and other doctors. And at home it has meant beginning to pack bags, trying to eat everything in the fridge, and writing shopping lists for our hospital stay.

Hannah having an ECG - she was very intrigued by the cords and stickers
Hannah having an ECG – she was very intrigued by the cords and stickers

But our preparations have been put on hold, as Hannah’s surgery has been delayed due to another more urgent case. And while we are disappointed, it does mean a bit more time at home enjoying Hannah in all her smiley, gurgley, loveliness before she spends a couple of weeks sad and sore recovering. It also gives me more time to explain what the plan and aims of this operation.

To recap, Hannah has a congenital heart condition called Tricuspid Atresia, where the right side of her heart did not develop properly in utero, resulting in restricted blood flow from the heart to the lungs. While Hannah’s heart cannot be repaired completely, there is a 3 step plan for surgery enabling her to grow and play like any other little girl.

On day 2 of life Hannah had the first of these 3 surgeries, the BT shunt. The operation involved insertion of a gortex tube to connect an artery near her shoulder directly to her aorta. The result was that enough blood now flows to Hannah’s lungs. However it was only a temporary procedure, intended to allow Hannah to grow a bit bigger until her body could better cope with the next operation. And so now that Hannah is 4 months old she is heading back to hospital.

Stage 2 is called a Bidirectional Cavo Pulmonary Connection (BCPC) or Glenn shunt. In this procedure, the BT shunt is removed and then the  major vein which brings non-oxygenated blood back from the body to the heart (called the superior vena cava) is attached directly to the pulmonary artery (which carries blood to the lungs). This causes blood to flow directly into the lungs, bypassing the heart altogether.

It looks something like the second diagram:

The three step surgery plan for Tricuspid Atresia. Source: Royal Children's Hospital Melbourne
The three step surgery plan for Tricuspid Atresia. Source: Royal Children’s Hospital Melbourne

The Glenn shunt has several intended benefits. It will lower the pressure placed on the left side of Hannah’s heart by reducing the amount of blood which is pumped through it. And it will also prevent blood that already been oxygenated from returning to the lungs, keeping the heart from doing unnecessary work.

But again, it is only a temporary procedure. When Hannah is older, at about 3 years of age, she will require a third operation, called a Fontan procedure, to create a more permanent re-plumbing of the blood flow around her heart, which you can see in the third diagram above.

During the operation, Hannah will be placed on a heart bypass machine that takes over the functioning of her heart and lungs to allow the surgeons to do their thing. Then her recovery is expected to take 7-10 days in hospital, dependent on if there are any complications and how she re-establishes feeding. When we get home she’ll be on reduced activity for several weeks, such as no tummy time, to allow her wound to heal and heart to strengthen.

Being such a big operation, there are a few of risks involved. It wasn’t an easy conversation to have with her surgeon about what could go potentially wrong. But as the Glenn shunt operation has been used for almost 30 years to treat babies with Tricuspid Atresia the surgeons have had lots of experience, the chance of something going wrong is very low and the long term prognosis is good.

We continue to be so thankful to God for the medical knowledge, skill and care that we have access to so close to home. Naturally we do feel nervous that the operation and Hannah’s subsequent recovery goes smoothly.  In recent weeks it feels like she has really developed in leaps and bounds – starting to giggle, almost rolling over and increasing in her awareness of the world around her. Knowing that soon she’ll be sedated, and then hurting and sad makes my heart ache. Some days I catch myself staring at her beautiful chest, tearing up knowing there will soon be a long scar trailing down it.

But, without this surgery we won’t be able to watch how Hannah grows into a little girl, teenager, young woman and adult as we so want to. And her scar won’t matter, because she is a beautiful girl wonderfully made by God. We know that he holds her safely in the palms of his hands. Only He knows the number of days he has ordained for us to enjoy with her on earth, and so we entrust her to Him. His faithfulness and sovereignty over our lives has been a great source of comfort and strength in recent months, a firm anchor in the midst of uncertainty. Thank you for continuing to keep us in your prayers. Please give thanks for …

  • Our recent family holiday, for the rest and relaxation we enjoyed
  • Hannah’s continued growth and development, and the joy it is to see her beginning to understand and engage with the world around her
  • A confirmed surgery date and our preparations so far

Please pray for …

  • Hannah’s surgery and recovery to go smoothly and be successful
  • Our trust to continue to be in Jesus Christ, our Lord and Saviour
  • Patience, comfort and relief from anxiety and uncertainty
Hannah's first trip to the beach
Hannah’s first trip to the beach

If you want to read more about Tricuspid Atresia, here are a couple of websites that have been recommended to us by our specialists:

We have this as a sure and steadfast anchor of the soul, a hope that enters into the inner place behind the curtain, where Jesus has gone as a forerunner on our behalf. – Hebrew 6:19-20a