Together in NZ
31 December 2022
Hi Everyone,
We are writing our final update on this page.
Two weeks after Lumi's sudden and unexpected passing we all boarded the flights to New Zealand that were meant to transport Lumi, together with her medical team, to Starship hospital.
Lumi was in a relatively stable condition at the time of her cardiac arrest. Just the week prior, we'd received the unbelievably positive news that the right side of her heart had grown in response to the surgery she'd had on day one of life. This had potentially huge ramifications for her diagnosis and long-term prognosis. She still needed major surgery, but for the first time there was the possibility that she'd one day have a fully, rather than partially, functioning heart.
We were so excited about the future: we had, thanks to you all, the funds to bring Lumi safely to NZ, to tackle those surgeries head-on and hopefully build a life with a stable and healthy baby. This made her sudden death so much harder to accept.
The autopsy and hospital investigation were both inconclusive. She became very upset while having an IV line put in (this was for a planned catheter procedure, which was meant to gather diagnostic information for the Starship team who were preparing to receive her). I was sent back to the hospital room to calm her down, and did everything I could, but she became more and more distressed until she suddenly stopped breathing. The ICU team spent 90 minutes trying to resuscitate her, but each time she chose to go. After numerous attempts, they stopped.
It was a total shock for us, and for her doctors in Estonia. We are still chasing answers, but we may simply have to accept that Lumi was a very fragile baby, and that we'll never know exactly why she went when, and how, she did.
We've settled in West Auckland and for now, Lumi's ashes are with us as we try to rebuild our lives in New Zealand. I am so grateful to be back home, among family, friends and a supportive community.
What you have all done for us - there are no words.
When Lumi died, we were able to book last minute flights for my sister Katie, and father Geoff to return to Estonia. They were there when we sat with Lumi for the final time before her cremation. They made it possible for us to pack everything up and take those flights to NZ. Their presence made those first days and weeks manageable for our older daughter, Nora. We were able to arrive in New Zealand with the financial burden of the trip and relocation greatly eased, and this absolutely saved us.
Not a day goes by when we don't think with gratitude about every donation we received and how much it's affected our lives. And despite the outcome, Lumi did experience those messages of love and support, and the incredible generosity we received from you all. This shone a light on her last days, and we're so grateful!
We've made a pledge that as soon as we are able, we'll offer the same support to families like ours on Givealittle and through the organisation Heart Kids.
With love,
Jenny, Mihkel and Nora
