Lucas updates

Monday update: the family are preparing for Lucas' 4 hr heart cathetarisation on Thursday. The pulmonary hyptension has taken such a terrible toll on Lucas and his lungs and they are unable to ween him off the nitric oxide. Their most harrowing hours are in the nights when his O2 saturation percentage has gone down to the 20s (a healthy saturation is in the late 90s-100%), yet in the day, Lucas is playing, standing up in his crib and giving so much in return, that it's hard for them to digest the severity of his illness and reconcile the two extremes. This is going to be an exceptionally difficult time for the family as they prepare for Thursday's surgery which will be both exploratory/diagnostic and will aim to treat Lucas. Please keep writing on their blog and reaching out to them with your messages of support and suggestions as to what's worked for PH for your own experience. Each of our Children's Hospitals have unique approaches that can be shared. MK and Blake check on the blog regularly and it is a great source of comfort to them.

Saturday: Spoke to MK. Pls link to their blog for information and to leave comments. How can any parent bear the thought of being told the worst possible outcome?.. it is too heartbreaking to imagine. Many of us in the community have found ourselves with these impossible, harrowing dilemnas before and as such we have enormous empathy and respect for the Weindorf family and what they are going through.

MK and I have shared a rare journey, Lucas being born a week after Reuben also by csection and when you read her account of the first days and weeks of Lucas' life, the unfurling of events and diagnosis, the emotions, the pain, it is so incredibly similar to our own experience. You feel at the time that you're suffering so uniquely, only to discover but a few days later, another family is experiencing the same. And those experiences one day give way to the wonderment of your baby growing and experiencing life and joy. I long for those days again for the Weindorf family, that Lucas' inner strength will pull him through. In none of our experiences of CHARGE have the paths ever followed exactly what the Drs in their wisdom and knowledge may have predicted. Each of our babies is as precious and unique as the prints upon their fingers.

Please continue to think of them and leave your comments on their blog. It will mean so much to them right now, your thoughts and prayers.

http://mkweindorf.blogspot.com/