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…
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
It’s been a busy couple of days! Hannah was discharged from ICU and moved to the cardiac ward. Overall she’s doing well.
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!
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
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.
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.
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
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.
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.
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
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
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.
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 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
If you want to read more about Tricuspid Atresia, here are a couple of websites that have been recommended to us by our specialists:
The date has now been set for Hannah’s next surgery, which will be in mid August. To prepare we have more medical appointments booked and will find out in the next couple of weeks the plan for the operation and how long to expect Hannah’s recovery to be.
What has caught me off guard is how conflicted I feel about having a date to work towards. Not that it is a surprise – we’ve known since Hannah was 20 weeks old in utero that this progression of surgery would be needed to fix her heart, but for some reason I’ve been struggling to believe we’re heading back to Westmead again.
As I process it, I think things will be both easier and harder this time around.
Easier because we only have Hannah to focus on, instead of me recovering from giving birth and Gus having to look after us both.
Easier because we know the hospital now and can speak the ‘medical language’. We’re familiar with the place and know what ICU is like. We know to take forks with us to the parents hostel (so many knives but no forks!) and that Starbucks is the only place with real bacon on its panini’s (amongst other important things!).
Easier because we know her specialists better now and have confidence in them because of how well they’ve looked after Hannah in recent months.
But I think our time in hospital this time around will be harder too.
Harder because we don’t have the same adrenalin and excitement of Hannah being brand new.
Harder because we’re caught between knowing last time went so smoothly but also recognising there are always big risks with open heart surgery.
But most of all harder because we know our little one so much better now. Now we know how much fun and special it is having her home. Amongst other things, we know the snuffling noises she makes when she’s asleep in her bassinet next to our bed, that she prefers bath time with daddy, the hilarious face she makes when she’s concentrating (let the reader understand…), and that Incy Wincy Spider is her favourite. Her personality is becoming clearer by the day.
But what hasn’t changed is our Heavenly Father and his faithfulness. He continues to be sovereign over our lives and Hannah’s. And so whatever happens this time around I can continue to find comfort and strength in him knowing he has things under control.
Please give thanks for…
Hannah’s continued growth and development
The joy she brings to our lives
A decision about when Hannah’s next surgery will happen
Please pray for…
Good health for Hannah so that she is able to undergo the operation as planned
That we wouldn’t feel anxious but would trust God and his will
God is our refuge and strength, a very present help in trouble. – Psalm 46:1