Surgery - anti-reflux procedure and gastronomy tube insertion

So it's all happening! Sarah-Hope had her anti-reflux procedure and gastronomy tube insertion on Friday, 27 January 2012. The operation was a success and since she's been home she's already taking much bigger feeds and they are going much faster than with the nasogastric tube. With this comes the major progression... from 8 feeds a day to 7, yahoo! While this is now the official feeding schedule, the truth is that we mostly only managed to give her 7 feeds a day anyway by making the terrible mistake of thinking we would take a short nap before the midnight feed... or 6am feed... or 9am feed... and then sleeping through our alarm clocks and snooze alarms repeatedly... waking up in a panic an hour or two later trying to work out how to fit all her feeds in! But, despite her parents, she is growing... and we had our first smile!

Sarah-Hope will be having heart surgery on Monday, 13 February. Its a fairly simply procedure to close her arterial duct as this is allowing too much blood into the lungs which adds to Sarah-Hope's breathlessness. Looking forward to some progress with oral feeding once this is done. She will also have multiple platelet transfusions before and after the surgery, as was done last time...  and we hope that unlike last time, she will not develop a sugar addiction from the nurses putting sucrose on her dummy! We didn't realise this... and Sarah-Hope went cold-turkey on us trying to shake her newfound love for sugar. Eventually, thinking all the crying may be an indication that she could still be in pain from her surgery, Rich drove back to NICU to have her checked out. A nurse offered her some sucrose... she sucked that dummy so hard it created a vacuum and a red ring around her mouth, but she was totally satisfied! And so Rich came home with a syringe of the magic stuff and we weaned her off over a couple of days...”

Update - celebrating 50 days of life!

How is Sarah-Hope doing?

On Saturday we celebrated the fact that she'd been alive for 50 days! The clinic sister says she is thriving... meaning she's "growing, weeing and poohing", and is beautifully alert. Awesome. She continues to be an outstanding communicator (neighbours don't believe there is anything wrong with her lungs!!), and we're trying to become better listeners (before our ear drums burst)!

How is the parenting going?

So we picked up our first parenting book... fascinating stuff. They speak about a flexible routine. This, or so we thought, gave us licence to be flexible in our routine... when we want to feed her, put her down to sleep etc. We didn't realise that the flexibility is actually about her! So the routine is for us, flexibility is for her... crucial distinction!

What's happening medically?

Sarah-Hope has been diagnosed with Thromobocytopenia Absent Radius (TAR), a very rare condition. Knowing this helps her doctors in terms of managing her, as they are able to draw on academic literature regarding treatment. The research indicates that we can expect her condition to improve as time goes by, which is great.

What can we expect in the next few weeks in terms of her treatment?

- almost weekly platelet transfusions. This is in order to keep Sarah-Hope's platelets at healthier levels so that she is less at risk of bruising and bleeding. The paediatrician has also suggested that given her vulnerability, we stop beating her on the back in order to wind her... a softer rub would be more appropriate:)

- a procedure to insert a PEG (tube directly into her stomach), which will replace the nasogastric tube. This is a longer term arrangement until Sarah-Hope develops the respiratory capacity to feed orally, is much easier to manage, and less irritating for her than the nasogastric tube. The super cool thing is that you can put meds and food into the stomach MUCH FASTER than through the nasogastric tube... highly appealing particularly around the midnight and 3am feeds!

Reflecting on Sarah-Hope's first few weeks at home

We had a wonderful Christmas and New Year’s at home with Sarah-Hope. Having not done any reading on the practical realities of parenting, we were in hysterics trying our hand at this without nursing support a few metres away… we had a lot of fun! Most of our family and friends were away during this time but we did enjoy a short visit everyday from whoever had been assigned to bring us a meal (these continued for 3 months after Sarah-Hope’s birth… and people made such an effort to feed us that we only had a handful of meal duplications in all that time! We’re still blown away by the amazing support we received). But the best thing about being home was having the privacy and time alone with her to enjoy Sarah-Hope, get to know her and explore her little body.

We decided to let everyone know what we did about Sarah-Hope’s physical condition in the first communication after her birth – hopefully in such a way which demonstrated our love for her and protected her dignity. But we could not try to protect people from the pain of her physical difficulties. This was more difficult for me than Rich – having to accept the reality of Sarah-Hope’s challenges for her, us and everyone around her. Months before, the pastoral counsellor had suggested that I draw from the bible story of Mary, the mother of Jesus. When Jesus was taken to the temple to be presented to the Lord, a righteous and devout man called Simeon declared great things about Him which his parents marvelled at. Then, Simeon said to his mother, Mary, “This child is destined to cause the falling and rising of many in Israel, and to be a sign that will be spoken against, so that the thoughts of many hearts will be revealed. And a sword will pierce your own soul too” (Luke 2:34-35). The ‘piercing of my own soul’ was something that I could identify with, the pain a mother experiences as their child suffers. I prayed that I might continue to learn much from the story of Mary, who “hid in her heart” the things said about Jesus,  who recognized her role although she was also put in her place occasionally (when Jesus said “what mother, brother, sisters?”), having the grace to work hard, but to also step back and watch God’s story unfold.

On a number of occasions in those first few weeks at home Rich and I would find each other weeping over Sarah-Hope’s body and how difficult life might be for her. It was an important part of our own grieving and the acceptance process that we needed to go through. But based on the experience we had had up until this point, we knew that this painful journey would also be accompanied by beauty.  And since we had known God navigate us through many difficulties in the last few months, we could be sure we’d find grace for future challenges as they arose.

One interesting challenge that arose was revisiting the “trusting in God, not in outcomes” approach that had guided us through the pregnancy after the birth. Now with a real, live baby in front of us, your parental responsibilities and the “sense of control over their lives” are greater. We realised the temptation to now put our hope in outcomes – for instance, we could put our hope in the fact that Sarah-Hope looked alert. But we had to remind ourselves that we should not put our hope in her intellectual potential and what that could open up for her future… but in God. Still. And always.

Sarah-Hope's first week at home

Sarah-Hope's first week at home   has been absolutely hilarious... she is just surviving being parented by   us.

First night…Rich on duty for the   midnight feed which usually gets started at around 11.30pm... Comes to bed at   2am!

Leigh: "Rich, what have you been   doing?!"

Rich: "Changing her nappy….I   haven't got this parenting thing down yet…it actually took 1.5 hours, 3   nappies and about a kilogram of cotton wool!"

We've had a couple of trips to   NICU at night for help with the feeding tube, making sure it stays in its   place as we wouldn't want to be throwing milk down into her lung!   This can be a bit of a nuisance... but, on the other hand, we   are VERY grateful for it as it gives us the advantage of getting food   into her even when she's sleeping / exhausted from drinking from the bottle   for few minutes. Also, we don't have to fight to get her medication into   her... we can just 'drop it down the tube'. Of course, this should be done in   accordance with the medicine schedule that we were given when we were   discharged from the hospital.

Rich: "Hi, this is Richard,   Sarah-Hope's dad... yes; it’s going very well at home... oh the only thing is   that we didn't give Sarah-Hope her medication at 3pm... or at 6pm. Can we just   add them to her 9pm meds and put it all down her tube now?" When we left NICU,   we recorded the staff on video saying "call us any time of the day if you need   anything, have any questions...” I don't think they expected to hear from us   as much as they have! But great to have nurses we can call 24 hours a   day.

We've been quite busy organising   our space for the new addition to our lives. You know a father's love for   his daughter when, in an instant, he's prepared to give up   his "man-cave" for her. And it doesn't stop there. One of the things we   learnt from the nurses at NICU was creating a nest for your baby, which they   do with rolled up towels covered with receiving blankets. Rich has taken this   on... building nests for Sarah-Hope in the moses basket, the papoose, the car   seat etc to ensure her ultimate comfort and support. I had to really put my   foot down when I saw Rich putting our best bath towels into Sarah-Hope's   nests! The next day, I couldn't figure out why I only had about 2 towelling   nappies (when I thought we had about 15?). You guessed it - all her nappies   were being used as nesting material. So towelling nappy donations are very   welcome, we still need plenty!

Thanks for my very first nest at home, Dad

Sarah-Hope’s first Christmas stocking thanks to Granny Christmas

Cuddle time

Caught napping

Bonding with mom

Update letter - Sarah-Hope is home for Christmas!

Dear friends and family

We trust this email finds you well?

We never imagined that we'd be celebrating Christmas this year at home with our daughter but we had the absolute joy of bringing her home yesterday!

We had an amazing hospital experience and received such compassionate care. Since we didn't prepare to bring a baby home, it's been quite helpful having a couple of weeks to learn about changing nappies and bathing babies with 24 hour nursing support right there... and get our heads around the fact that OH MY, WE ARE ACTUALLY PARENTS!

Up until now, Sarah-Hope was in the neonatal intensive care unit where she was monitored and assessed in order to get a better overall picture of her health. The most significant features at this stage are:

1. The small size of her lungs, which manage to maintain oxygen saturation beautifully but have to work about 2.5 times as hard as a typical newborn. This diminishes the energy she has left for other activities such as feeding (she has a feeding tube as a result). Also, a chest infection at this stage is a serious risk for her.

2. A very low blood platelet count which means she bruises easily and could be at risk of spontaneous bleeding or at worst haemorrhaging.

The good news is that her lungs will grow as she does and her platelets can stabilise in later years. In the meantime, since she is still vulnerable, we'll be taking precautions such as limiting her exposure to sick people, avoiding crowded situations, asking visitors to wash/sanitise their hands, and 'handling her with care'. We're really going to have to restrain ourselves as we're so looking forward to introducing our darling Sarah-Hope to you all (she's so sweet! See picture attached!) but will have to take it slow.

We want to thank you so much all for your love and support and for celebrating Sarah-Hope's life with us. By the way, you may have noticed it was first name 'Sarah' and second name 'Hope' before she was born... her father didn't want people to 'lose the Hope' so officially registered her as 'Sarah-Hope' so that HOPE remains! Our prayer for you this Christmas is the same as for our daughter: "We pray also that the eyes of your heart would be enlightened in order that you know the HOPE to which he has called you" (Ephesians 1:18a).

In His arms,

Richard, Leigh and Sarah-Hope

P.S. Once again, apologies for not being able to respond to your messages (which we love!)... If you'd like to receive updates, please contact Carol, who can send you little bits of news every few days - Carol is still our main point of contact for now. Darlene can be contacted with regard to providing help / meeting needs.

On our way home for Christmas

Thanks for setting up my nursery Aunty Carol and granny

Reflecting on the birth experience

Reflecting on the birth experience is humbling – what a God ordained day! The lead up to the birth, complete unity in our marriage regarding the decisions about the birth and care plan, the team of doctors which came together around us, the timing of the birth and God helping us with our work and leave in such a way that we could fully give ourselves to the moment and have space to see where things would go, the compassionate response and staff at the hospital, and then the unexpected outcome!

Serene would be a good way to describe how I was that day. I was at peace and interested to see what God would ordain for Sarah-Hope’s life (and ours!). Rich was buoyant and excited to meet his daughter. We could still feel her kicking away so we were pretty sure we would get a chance to meet her alive which is what we had hoped for.  

How did we feel that she was here to stay? At the actual birth, Rich got the first opportunity to hold her after she had been checked out (I was still being stitched up). He describes that moment as one where a heavenly love for Sarah-Hope literally invaded his heart. He was totally captivated. Receiving God’s love for Sarah-Hope was a tangible experience of how perfect love drives out fear – all the worries we had about what we would do if we she survived seemed to disappear. Love was stronger.

There were still ups and downs. A few days later when her platelet count was found to be very low (an infection was suspected – and many babies born with hydrops die from infection), we weren’t sure what to think and remained guarded as her medical condition was being monitored. But we felt full of purpose – we had started our family and it was the most fulfilling experience of our lives. No one expected Sarah-Hope to come out “ready to go” – and while this amazed doctors (especially those who had tracked her condition throughout the pregnancy), for us there was such a sense of God in our midst. He released us from the burdensome decisions about life support – He had given her life. The presence, peace and grace of God that we knew at that time was enthralling. Yes, there was pain and we still had a long road ahead, but God was with us and we felt thrilled to be on this adventure with Him. We had fallen into the hands of God!

Update - 11 days old

Sarah-Hope is a delight... The only tube left is her feeding tube, which is going to be with us for quite a while as her oral feeding ability is constrained by her respiratory function (but lungs do grow!). BUT exciting news is that her doctor says he'd like her to be home by Christmas! Hoping Santa visits Sarah-Hope in a big way cos we didn't plan for this:)