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 

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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 

On the mend

No more delays – the surgery went ahead!!

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.

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Our little one in her big bed

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.

Her first bottle after fluid restrictions were decreased was very well received!
Hannah’s first small bottle after fluid restrictions were decreased was very well received!

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

More surgery, more friends

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.

Gus received a soggy card from Hannah for his first Fathers Day :)
Gus celebrated his first Fathers Day with a soggy card from Hannah 🙂

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.

Kat, Mick and Sophie
Kat, Mick and Sophie

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