It’s the middle of the night as I type these words 3:52 am to be exact. I have just finished setting up a tube feed for Declan and also pumped more breast milk for the numerous feeds to come, I am in my dear friends cozy home, being showered with love and kindness just north of Toronto.
Declan was released 2 days ago from sick kids as we await his possible liver transplant. I am feeling good, and so very happy that we are on the road to getting our sweet little man healthy.
For those of you that don’t know Declan has Biliary Atresia, which is a rare liver disease that affects his ability to drain and filter specific toxins from the body. The main one is bile, it builds up in his liver and spills over to his blood stream. That’s why Declan is still so yellow, or jaundiced.
If Declan doesn’t receive a new liver he will not live past the age of 18 months. Don’t dispare though friends both Tim and I are blood type matches and potential live donors for our sweet boy.
Declan has a number of complications attached to his condition but amazingly enough he continues to surprise his endless list of doctors, nurses, physio and occupational therapists with his strength, weight and demeanors.
Declan is meeting all his milestones on time, some of them as early as weeks ahead, when they expect him to have delayed growth, muscle tone and head control he exhibits steady weight gain, amazing tone and head control everyone is in awe. God is good.
His growth is something we have struggled with, but with some very hard work we have managed to keep him above expected growth patterns and more importantly on his mommas milk. I fortify his NG (nasal gastric) tube feeds with a specialized formula to help his absorb more fat and increase calories, but the base is EBM (expressed breast milk). I am completely dedicated to keeping up with the breastfeeding and Declan still “nipple feeds” when ever he wants, which I am so pleased about. My hope post surgery is to go back to exclusive breast feeding alone.
Tim and I are currently discussing who the donor should be and then next week should hold a number of answers for us. LRD (living related donors) need a major workup of tests to determine a potential match, which we hope will start next week. We intend to stay in Toronto till we find out who is a better match donor wise and hopefully know his transplant date.
All of this is a bit scary and overwhelming but we are getting through it one tiny step at a time, some days are moment to moment. We are running on strenght not of our own and have been blessed by loved ones generosity, a dear friend has had Sydney all week as she was sick and cant be around Declan and Tims mom and dad have been nursing him back to health as he was really sick with the flu. One of my best friends has opened her house to Declan and I, even as she prepares for the arrival of there sweet babe next week- can you believe that?
I am learning new roles daily, and all the challenges that accompany that. I am bone tired and emotionally exhausted but very optimistic about Declan’s transplant and future as a “normal” healthy kid.
I will never again take health for granted. I will circle myself in love and optimism, I will turn my face and ears from useless banter and toxic thoughts, and I will continue to be present with my sweet family for little else matters. Be present, let your current “now” be good enough, show grace and mercy daily and above all else think positively and love fiercely.
Thank you all for your continued support in prayer and love, we are blessed with your light during this at times darker path.
Will continue to update when I can.