Yes, we finally made it home. After a week+ at Children’s Hospital, we were honorably discharged this morning.
When I heard we were able to leave I immediately had a sense of relief followed by an overwhelming feeling of anxiety.
How do I care for our 2.5 month old baby with an incision that is almost the entire width of her stomach?
How do I administer 6 different medications throughout the day without getting them mixed up?
How do I tell if she is in pain versus being hungry?
My world completely changed.
So here I am. Sitting in my own bed, enjoying the feeling of something other than a teeny tiny couch in a hospital room and thinking about the next 3 months.
The next 3 months will be appointments at Children’s to check Bea’s incision and progress as we navigate our way through this disease. We will be monitoring her closely while she is home and then by the 3 month mark we will know whether her Kasai surgery was a success (which it will be).
I’m not going to lie, these next 3 months will be critical for our family. She has a small fever – we call Childrens. She has flu-like symptoms – we call Childrens, if her stool is a weird color – we call Childrens. We will be on the look out for many odd things but we are extremely confident Beazy will live many years before needing a transplant.
As I end this blog post I want to mention 4 things.
#1 – the people at Children’s are incredible. I can’t say this enough. And if any of you are reading this Jordan, Bea, and I will forever be indebted to you. The kindness you showed us kept a smile on our faces when we faced the hardest week of our lives. Julie, Billy, Ashley, Macy, Stephanie, Happy Patty, Amanda, Jen, Darrell, Angela, Sarah, Megan, Dr Alonso, Dr Kohli, Dr Campbell, Dr Raffe, Dr Ryckman, Dr Myron, Mark, Vicki, Dr Miethke, and the many many others who visited with our Queen Bea – we will never forget what you did for us this past week.
#3 – those of you that have reached out to my family, we can’t thank you enough. The messages from friends I haven’t heard from in years, the thoughtful flowers and gifts sent to the hospital, the offering of meals, the texts, calls, messages are SO appreciated. I truly can’t stress it enough. Not only did your kindness mean a lot but those that have reached out to my parents….I thank you from the bottom of my heart.
#3 – this blog will continue with updates on Beazy but I also want to keep using it as an outlet for things fashion and baby. This blog is a hobby for me and I want it to continue so please check back – I promised myself I wouldn’t let this turn into the “Biliary Atresia: This is Bea’s Story” type of blog. 🙂
#4 – And finally, hug your loved ones a little tighter. Always try to have a positive attitude. Give thanks for your health and the health of your family.
And trust that God always has a plan.