Creating this blog has been on my to do list for way too long- about a year I guess. And I just keep seeing it as this incredibly daunting task… how do I describe our life? How do I go back and tell the whole story? Do I want to go back and relive all of it? What photos should I put up? How do I let people know about my blog? When will I ever actually have time to keep it up> And for all those reasons, it just keeps staying on my list of things I should do rather than actually getting done…
But now here I am- doing it! I really want to keep a blog because I have been blown away by the concern, interest, compassion, friendship and love bestowed upon our family and I want to keep people more informed. And my Facebook posts are just getting a bit ridiculously long these days! There’s just too much to fit in a short update and too much that I only really want people who are actually interested to know about and not every random person I may have met once to be subjected to!
So it’s going to take me a while to get through the history so I plan to just cover things as I get time because I will never actually publish my first post if I try to cover all of it at once. For today I’ll give an overview and the details will just have to wait! I suppose a lot of my readers already know most of it anyway so no harm in diving into the present- which is, by the way, a way happier place to focus on anyway! Max and Addison are 9 months old. They are living at home and they are happy and we love having them home and starting to feel like a ‘real’ family! We are going out more- last week Max went to the eat bagels, to Starbucks and to the grocery store and Addie went out to eat and shopping. We’re getting a routine and feeling less overwhelmed. We still have lots of crises and drama but amidst it all, there is such great joy in our lives.
I am working on a month by month overview of the past 9 months but until that happens, the short version is that Max and Addison were born 9 weeks early and while they were in the NICU being preemies, we discovered through blood tests that they had a rare genetic disorder that caused them to dump important proteins including antibodies that fight infections into their urine. Once we knew this, we moved to the big hospital in the city where we had the most amazing team of doctors and nurses working hard to keep Max and Addie alive and healthy and happy. Both babies had central lines for IV meds that helped replace what their kidneys were losing. By April we realized they couldn’t come home as long as they had their kidneys because they were too vulnerable. So we made the difficult decision to begin the process of removing their kidneys. We started with taking out one and putting in a dialysis catheder for once their second kidney was gone. In late June, when they were 6 months old, their remaining kidney was removed and we began dialysis. Lots of drama ensued including a period of a couple of weeks when Addie was very sick. They fought, we prayed and God provided. 2 months later, Al and I were trained and we brought them home.
And now they are home on dialysis which is crazy and busy and scary and difficult but they are home. And happy. And so it’s ok. We’re hoping to transplant them each with one of our kidneys in 6-12 months but that’s a whole different post. Al is home with them every day and I’m working because bills don’t pay themselves. And we’re just figuring it out one day at a time. Our life isn’t like anyone else’s and of course we have days of feeling overwhelmed or sorry for ourselves… but on the whole, we just feel so blessed. Our babies are amazing treasures. They are miracles- constant reminders of what God can do through medicine. We love them more than you can imagine. They are amazing fighters, they are resilient like you wouldn’t believe and they are just so beautiful and such a blessing.
So this will be my place to share our journey with you. To go into more detail about dialysis and their histories, for people who are interested. To bombard you with photos. To share prayer requests. For those of you have been praying for us and encouraging us already, we cannot thank you enough. For those who are new to our journey, welcome aboard… it’s a crazy, scary, and fabulous ride!