It was a quiet weekend for all the Davys. We took time out on Saturday afternoon to hang out with friends at their lovely home in Mt. Eden (thanks Jae, Jo, Emily & Claudia!) which we all enjoyed, and a highlight for Francis was getting to watch the 2nd France - NZ rugby test game that evening with Jae and mates. On the Sunday afternoon we took the girls to a playground by the beach to enjoy the crisp but beautiful winters day. The playground was packed with busy little bodies and as I stood and watched, a stranger asked me if my kids were there. I said 'yes', then she asked, 'How many kids do you have?'. It was a simple question, but the first time I had been asked since Sam was born. It really caught in my throat as I said for the first time, '3!'.... then I walked off, unsure quite what I felt and not wanting to continue the conversation with a stranger to explain that 2 were there but 1 was missing.
Samuel had a quiet weekend too. He filled his nappy with meconium on two occasions but we're yet to see whether that has any significance concerning the muscular action in his bowels. Otherwise, he was generally more settled, perhaps due to the individualised intravenous nutrition with increased fats that has been ordered for him, or the antibiotics that they put him on to deal with the suspected infection through his urinary tract as a result of the catheter. His creatinine is up again to over 100, having dropped down to 56 last week, so we're hoping that number will come down once he's had the ductus valve operation which should reduce the amount fluid in the lungs and therefore the need for diaretics which affect his kidney function (but help him breathe better).
The highpoint of today was meeting up with a couple, who have a 3-yr old called Aria who has lived and grown up solely on TPN since birth. We heard about Aria from about 4 independent sources and were keen to meet up with her parents Hamish & Anita to learn from their experience. Aria is a beautiful little girl who has surprised doctors with her tenacity and ability to thrive despite her medical problems and it was such an encouragement for us to meet another couple who have been down this road before us and were able to share some of their journey with us (check out Arial's website at www.aria.org.nz). They are anticipating a multi-organ transplant in the USA sometime in the coming year. Although Aria and Samuel have different medical conditions and challenges, they both share problems with their digestive system and therefore need to receive all their nutrition via TPN (intravenous nutrition). It was so helpful talking through the day-to-day reality of administering TPN and how it has become completely normal for them all. It was lovely to meet another couple who share not only the same challenges but also the same faith in God that has sustained them, and which we know will also sustain us through what is ahead.
Hamish and Anita prayed for Samuel and after they left we felt greatly strengthened by their practical advice on how to get through these challenging early days of hospital life, how life on TPN has enabled Aria to develop and thrive as any other child, and their encouragment of how having Aria has been a great blessing to them and many others around them. While Aria & Samuel's progress may be surprising the medics, we were reminded afresh today that their lives are being sustained by the same powerful God who is sustaining each of our lives. Every morning we all wake dependent on Him to give us life for the day ahead, just as Aria and Samuel are dependent on Him for every moment of their lives. Whether we have each other for 5 weeks, 5 years, or 50 years, all we can do is love each other for the time we've been given.
After they left, Francis got to have cuddles with Samuel and I have a great photo of both the men in my life sound asleep on the lazyboy! It's such an ordeal getting all his leads arranged so he can be moved for a hold, that only one of us gets to hold him each day, and I got the last hold (Friday).... so it's my turn tomorrow (yes, I keep track of it!!!).
Best wishes, Shirl & Francis