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.