We’re home!

I haven’t even started writing this post and I’m already teary! I wasn’t expecting to be writing about bringing my precious little girl home for several weeks, but here we are – I’m writing from our lounge room!

After having a fairly smooth night “rooming in” and confirming Hannah had gained weight, her specialists were happy for us to be discharged and bring her home. What an amazing answer to prayer!

Let loose!
Let loose!

Initially Hannah’s cardiologist expected her to be in hospital for 4-6 weeks, however, Hannah ended up at home much quicker than we expected. There are so many variables and so many small things that could have gone wrong along the way that she could have easily been in hospital weeks longer. Fortunately she went to full term and was a good sized baby, she was able to be operated on quickly, she responded to and recovered from the operation well and she learnt to feed and began put on weight almost straight away.

For each of these factors we give great thanks to our Heavenly Father. He enabled the doctors and nurses to care for our little girl so capably, to identify what was wrong and complete the first stage of her heart’s repair so well. We are in awe of the great standard of medical care we enjoy in this country, and the effort that goes into caring for these vulnerable little ones. He also sustained Hannah and helped her progress so well so quickly, along with keeping us calm and confident in her recovery. It has been wonderful to see the changes in her that have occurred so far, as she grows and gets more alert day by day.

Daddy and Hannah settling in to her new room
Daddy and Hannah settling in to her new room

So where to next? Gus and I are really enjoying being home and getting used to looking after Hannah here. She has had her first bath here and overall is sleeping and feeding well. We pray that continues!

Over the coming weeks we will have a number of checkups to see how Hannah progresses. We will have occasional visits to our local hospital to check on her oxygen levels, and we have appointments booked with her cardiologist, surgeon and a local paediatrician.

The checkups will indicate to her cardiologist when her second operation needs to happen, which he suggested will be when she’s around six months old. The next operation is called a Glenn Shunt, which replaces the current synthetic shunt with a vein from her leg.

But as I mentioned in my last post, our aim is to treat Hannah like any other kid, and focus on her reaching the development milestones like starting to recognise our faces, learning to smile, learning to crawl etc.

We’d love you to help us as we navigate being first time parents.

Please give thanks for …

  • The opportunity to bring Hannah home so much earlier than expected
  • Hannah’s excellent care in ICU and all the doctors and nurses who looked after her
  • God’s provision of so many friends and family to support us over the last few weeks and months

Please pray for …

  • Gus and I adjusting to being parents, that we would loving and patient with each other
  • Hannah’s growth over the next six months and the preparation for her next surgery
  • Hannah’s life, that she would grow to be a woman who trusts in Jesus as her Lord and Saviour

He is the Maker of heaven and earth, the sea, and everything in them— he remains faithful forever. Psalm 146:6

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 2 Corinthians 1:3-4 

Preparing for Home

Over the last week Hannah’s recovery from surgery has gone really well, with minimal complications along the way. It’s been wonderful to see her tubes come out and monitors be slowly taken off, and much easier to give her cuddles!

Hannah's new high dependency unit bed
Hannah’s high dependency unit bed

To our surprise, the doctors have started talking about getting her home soon – within the next few days! We had been expecting to be in hospital for another couple of weeks, so Gus had to go out and pick up the car capsule and pram which we had on lay-by till the end of the month!

But before the Grace Centre are happy to send Hannah home they encourage new parents to “room in” for a night or two. This involves Gus and I staying in a parents room (like a small motel room) within the Grace Centre overnight, with Hannah! It then seems like we’re on our own looking after her, but the nurses are close by if we have any problems / questions. It also means we and the doctors feel more confident about us taking her home! Even though Hannah has had some amazing nurses, one thing I’ve found hard this past week is that a nurse knows more about my baby than I do because even though I spend most of my awake time by her bedside I’m not there 24 hours a day. So I’m really thankful for the program of rooming in with Hannah and being able to take over responsibility for her care from the nurses.

Off we go to "room in" for the night!
Off to “room in” for the night!

Another milestone to reach before we are able to take Hannah home is meeting with her specialists and learning how best to care for her at home. That has involved learning how to prepare her medication (dissolved aspirin to act as a blood thinner to avoid clots blocking the shunt), completion of her newborn hearing test, meeting an occupational therapist who videoed Hannah’s movements to be reviewed again in 3 months time, and meeting a cardiac consultant to talk about postoperative care of Hannah’s BT shunt.

Before these meetings I had endless questions running through my head. But what stood out from speaking to the specialists was their encouragement to treat Hannah like any other newborn. When I mentioned to her cardiologist that sometimes I forget she has a heart problem he said “That’s good to forget and treat her normally. Just don’t forget your appointments here!”.  We do need to remember that she is slightly more susceptible to getting sick than other babies, but overall it won’t be helpful for Hannah or us if we wrap her in bubble wrap and become super overprotective.

Like any parents of a newborn, Gus and I are both excited and a little terrified about taking our little girl home. We’re expecting not much sleep and lots of staring at Hannah and each other in awe over the next few months!

Please give thanks for…

  • Hannah’s speedy recovery from surgery
  • The opportunity to “room in” at the hospital and practise looking after Hannah within the supportive environment of the Grace Centre
  • How God has answered our prayers over the past few weeks

Please pray for…

  • Gus and I as we learn how to care for Hannah and be Godly parents
  • Our transition to being at home together
  • Other families in the Grace Centre as they too get closer to bringing their baby’s home, and patience for those for whom this is still a long time away

Taste and see that the Lord is good; blessed is the one who takes refuge in him. Psalm 34:8

Walking this road together

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It’s now been a week since my contractions began in earnest and we started preparing for Hannah’s arrival. It has been a surprise to see some of the support God has provided us.

One of those supports are the Leites. Mike and Emily and their kids are another Moore College family, as Mike is currently in fourth year.

At the end of last year at the same ultrasound practice they received a similar antenatal congenital heart disease diagnosis to us for their third child and were transferred to the same obstetrician and high risk midwife here at Westmead.

Their daughter Evelyn was born hours before Hannah last Tuesday morning and after birth her diagnosis of Transposition of the Great Arteries (TGA) was confirmed. That’s where the pulmonary artery and the aorta are connected to the wrong sides of the heart. It requires an “Arterial Switch Operation” to correct the circulation. This is open heart surgery where the baby’s heart is put on cardiac bypass.

When Gus arrived at the Grace Centre with Hannah very early last Wednesday morning he asked if Evelyn was in the ward, only to find she was in the next bed over! And on Thursday morning Evelyn was operated on directly before Hannah by the same cardiothoracic surgeon. They also have the same cardiologist.

The uniqueness of our sharing our experience with others that we know is not lost on me. It is lovely to see their familiar faces around, to be able to pray for them and Evelyn, and chat in our new NICU language. I wouldn’t wish this experience on any other family, but it has been a great blessing from God to us, and I hope to them too. Seeing their trust in God during such a stressful time has been a great encouragement to Gus and I.

Our two families now have a very special bond, and I hope that Hannah and Evelyn grow up as friends who spent their first weeks of life overcoming great obstacles together.

Please pray for Evelyn, Mike and Emily and give thanks for Evelyn’s progress so far. Evelyn has been moved to the cardiac recovery ward and is doing well. She’s expected to be here for another week recovering.

Please also give thanks for God’s kindness to all of us, and pray that we and the Leite’s would continue to trust in his goodness and sovereignty.

The Lord is my rock, my fortress, and my deliverer,
my God, my mountain where I seek refuge,
my shield and the horn of my salvation, my stronghold.
I call upon the Lord, who is worthy to be praised. – Psalm 18:2-3a

Looking After Hannah

ICU can seem such a sterile, foreign and intense ward, with nurses and doctors always overseeing every detail of our child’s life, and yet in that we’ve also had the joy of being able to help look after Hannah.

No two days in the Grace Centre are the same – but I still thought I’d tell you a bit about what usually happens over the course of a day and the sort of routine we are slowly getting used to.

Hannah

Cares

Every 4 hours Hannah’s nurse completes her ‘cares’ routine. We’ve been able to help with gently cleaning her eyes and mouth with cotton wool buds, moisturising her mouth,  changing her nappy (which is complicated by all of her tubes!) and repositioning her so she doesn’t lie in the one spot for too long.

Doctors Rounds

Each morning the specialists and doctors make their rounds to visit each of the babies. We try to get there for these times and are encouraged to ask questions and clarify information that we’re not sure about. Hannah also has some regular tests including echocardiograms and x-rays to see how her shunt is settling.

Hannah having one of her echo's
Hannah having one of her echo’s

Feeding

Yesterday Hannah’s ventilation tube was removed and she was slowly brought off the sedation medication and morphine. As these heavy drugs leave her system she’s slowly waking up and beginning to get very hungry!

Feeding is pretty tiring for our little girl, so every 2-3 hours she is fed either through her nasal gastric tube or if she’s awake enough and wants to from a bottle.

Part of my expressing kit
Part of my expressing kit

Hannah’s new love of milk means I have to get busy! There’s a comfortable expressing room (which I affectionately call the milking yard) where four mums can express at a time. We each have kits that fit into the pumps and a storeroom with procedures for labelling and storing milk and cleaning our equipment. Even as I transition to breastfeeding over the next few days Hannah will still need a top up so I will be expressing for a while to come. So far I’ve found it a bit hard to get used to, but it’s worthwhile when I see Hannah enjoying it!

Cuddles

There’s no doubt these are our favourite times of the day! Before Hannah’s operation both Gus and I got to have some cuddles with Hannah which were lovely. But when she came back from surgery we had to wait a couple of days as it was logistically too hard to get her out of bed – she had a ventilation tube, nasal gastric feeding tube, jugular line in her neck, femoral line in her groin, cannulas in two hands and one foot, a catheter, monitors on her chest for blood pressure, and a chest drain. But now that they’re gradually being removed she’s able to be moved a bit more freely.

Daddy enjoying skin to skin time
Daddy enjoying skin to skin time

Yesterday afternoon we were encouraged to enjoy some skin to skin time with Hannah, which is an important bonding time. Between Gus and I we were able to enjoy 5 continual hours of time with her lying on our chests – which the nurses think is a record! We were both very content to stay put and enjoy holding our little one for as long as we could. Hopefully in coming days as Hannah is able to have more bottle/breast feeds we will get to spend more time cuddling her!

Looking Forward

The last couple of days have been very positive in terms of Hannah’s recovery from the surgery and progression to feeding and sleeping well. That is such a beautiful answered prayer for which we are so thankful for. The resilience and adaptability of newborns is phenomenal, seeing how quickly she has bounced back from such serious surgery has been amazing.

But, we also don’t want to get our hopes up too early – and know that there is a long road ahead to being allowed to bring Hannah home.

Please give thanks…

  • For Hannah’s positive progress over the last couple of days
  • That we can stay close by enough to Hannah to visit quickly but also get rest, and for the support we have from our church family allowing Gus to take time off so readily
  • For the opportunities we have had to meet other parents and have good conversations with the staff here

Please pray for…

  • Hannah’s transition to higher volume feeds and less pain medication
  • Our trust to remain in Jesus and in God’s sovereignty over our lives, and that we would continue to read our Bibles and pray regularly
  • Other parents in the Grace Centre and Paediatric ICU – that those who feel helpless, lost or overwhelmed would know God’s comfort and sustenance

Hannah’s BT Shunt Operation

It’s only Friday? Hannah’s first day felt like it lasted for much longer than 24 hours, but I guess that’s what happens when you’re born so early in the morning!!

On Wednesday we spent lots of time with Hannah getting used to life in the Grace Centre (Newborn Intensive Care Unit). Despite her many cords we have both able to cuddle her, learnt to change her nappy and how to soothe her. She has a nurse with her 24 hours a day and we’ve enjoyed getting to know them too – they do an amazing job for these little ones!

Our precious girl
Our precious girl

Wonderfully, I was encouraged to give breastfeeding a go on Wednesday night which I hadn’t expected at all! But as her oxygen levels were good and she has a strong sucking reflex it was a possibility. Hannah and I both need some practice, but it was such a beautiful experience and one I had prepared not to have for several weeks at least.

Late Thursday morning we were told Hannah had been placed on the surgery list for the day, though it was very unlikely to happen. But, as we’re learning, you never know how a day or couple of hours can pan out in the NICU! Just as we decided to go have lunch news came through that Hannah would be leaving for theatre within the hour. Once we got over the initial shock, preparation started to gather momentum as we helped washed and prepare her body, met the anaesthetist and someone from the surgical team and signed consent forms.

Hannah's bed in the Grace Centre (before her operation)
Hannah’s bed in the Grace Centre (before her operation)

(Before you read on, you might find reading my earlier post about how hearts work and what tricuspid atresia is here helpful.)

The first stage in repairing Hannah’s heart is called a Blalock-Taussig (BT) Shunt. It involves inserting a Gore-Tex tube between an artery near the arm and the aorta to detour blood to the lungs. It’s necessary in babies like Hannah whose right side of the heart has not developed. However it’s only a temporary measure designed to last several months until the baby is able to undergo open heart surgery. To insert the tube surgeons make an incision between two ribs on the right side of the body. I am continually amazed by the knowledge and skill the medical professionals have, and the access we have to such good healthcare in our own city. We have so much to be thankful to God for.

Hannah’s operation went well and she now has a 4mm wide shunt starting just below her collar bone and progressing down to her heart. She came back from the operation sedated with even more tubes for ventilation, feeding and pain management, inserted through her neck, groin and nose. She also had a drain clearing the incision on her side. What a trooper!

As Hannah wakes up over the next few days please pray for a stable recovery. First, Hannah needs to recover from the operation itself and come off ventilation and feeding support. Then the shunt will need to start doing its job taking over from the ductus arteriosus which will naturally close in the next few days (it’s currently being kept open by medication). In order to grow with Hannah the shunt size lets too much blood through at the moment, so she is also on medication to limit the flow until it stabilises.

Overnight and today her progress has been steady, and scans of the shunt and her incision have been positive. She’s slowly coming out of sedation, occasionally showing her displeasure at the prodding and poking with a very cute scrunchy face. The next few days are expected to be fairly quiet as they monitor her and slowly reduce her sedation.

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Cuddles on Thursday morning before Hannah’s operation

On reflection I’m thankful that we didn’t have much time to dwell on the surgery before it happened. It meant we both enjoyed long cuddles yesterday morning with Hannah without counting down the minutes. The intensity of my emotions surprised me as we helped prepare her little body and said goodbye as she went into theatre. A mix of feeling fiercely protective of my little girl, while being utterly helpless. Again the nurses and doctors were wonderful and very supportive, and mercifully the couple of hours she was in theatre went quickly. I also found listening to music peaceful, particularly resonating with the words of “I heard the voice of Jesus say”:

I heard the voice of Jesus say,
“Come unto Me and rest;
Lay down, thou weary one, lay down,
Thy head upon My breast.”
I came to Jesus as I was,
Weary and worn and sad;
I found in Him a resting-place,
And He has made me glad.

Please give thanks for…

  • Hannah’s first days of life and the joy of meeting our daughter
  • My smooth recovery from labour
  • The skill and wisdom of the medical staff looking after Hannah and completing the surgery
  • Hannah’s initial positive recovery from surgery

Please pray for…

  • Hannah’s next couple of days, her continued recovery from surgery and her heart’s transition to reliance on the shunt
  • Continued good sleep and lots of energy for Gus and myself
  • Our trust in Jesus to remain firm no matter how Hannah’s recovery progresses

When I thought, “My foot slips,”
    your steadfast love, O Lord, held me up.
When the cares of my heart are many,
    your consolations cheer my soul. 

Psalm 94:18-19

She’s arrived! 

Praise God for the safe delivery of Hannah Fleur very early this morning, 12:15am, 8th April 2015 weighing 3.56kg (7 pounds 14 ounces in the old system). We are absolutely smitten!

After feeling pre-labour tightenings for several days my labour started properly on Tuesday morning. We headed to hospital at lunchtime, but needed my waters broken at about 8pm and some hormones with an epidural after that to encourage the last progression of labour. What the human body is able to do is astounding.

With a room full of medical professionals Hannah was born and immediately started crying. I couldn’t have anticipated how much of a relief that sound was to hear – a sign of a good set of lungs!!

She was placed on my chest briefly while Gus cut her umbilical cord, and then the NICU team put her on the special resus trolley and started preparations for her trip to WCH.

 During that time Gus was able to have a cuddle with his precious daughter and before they left for the Grace Centre my bed and hers were wheeled together so that I could stroke her face for a couple of minutes.

 Once at the Grace Centre Hannah had an ultrasound that confirmed her diagnosis of Tricuspid Atresia.

I spent a few hours in the maternity ward and then got to go down to the Grace Centre via wheelchair this morning with Gus to meet with the NICU and cardiac specialists. As expected, Hannah will need surgery sometime in the next week.

Please give thanks to God with us for Hannah’s arrival and the many answered prayers along the way. We had wonderful midwives and a great obstetrician and so felt well supported throughout.

Please continue to pray for wisdom for us and the doctors looking after Hannah. Pray that Hannah would grow strong and healthy to cope with the surgery well.

We chose Hannah’s name because…

Hannah means grace or God’s undeserved favour in Hebrew. In the Old Testament Hannah is the prophet Samuel’s mother, and she trusts in God despite much uncertainty in life. In 1 Samuel 2:1 she prays:

“There is none holy like the LORD: for there is none besides you; there is no rock like our God.”

Our prayer is that our daughter would also grow up holding fast to this truth.

Fleur was Gus’s much loved sister who passed away almost 12 months ago. We miss her very much, and know she would’ve loved to meet her niece as she adored babies.

Thank you for your prayers and love for our expanding family.