Wednesday, January 18, 2017

The New Heart

The Progress of Joy

This journey is unreal. I am humbled constantly by the support and encouragement of friends, family, and even strangers. Today I had to take Louisa to her cardiology appointment by myself, which can be a challenge. We had to get an x-ray first and then go to the other side of the hospital campus with the images to our cardiologist. I was feeling a bit anxious about having her by myself but as I waited with her I was offered such grace and mercy by complete strangers. 

This journey has been refining. This child is OUR child there is no doubt in my mind. She is stubborn and strong willed. She is sensitive and sweet (when she wants to be). Her smile is perfectly timed. She recognizes my face and that brings this momma a lot of joy. 

This journey is hard. We have been through the ringer. Louisa has been through the ringer. We had an appointment with a GI doctor last week. The GI doc thought she may have a dairy allergy and we started her on a specialty formula. The first 3 days were bliss. She was less fussy and seemed to tolerate the formula better but then the bliss ended in 2 nights straight of 3 hours of sleep and a screaming baby. I get up so much in the night that we brought her back in our room and she sleeps in the bassinet. Side note: She is 13 lbs 7 oz so she "fits" in the bassinet but barely. Every now and then when she starts to stir I will just see little feet or tiny arms kick high in the air over the bassinet. 
This journey has been promising. Louisa's new heart allows her so much more energy and strength. I believe she is learning quicker too. This picture was taken at one of the thousand doctor appointments we have had and she is SO close to rolling over. We are working on arm strength so hopefully soon she will be moving and grooving. 

This journey has been dark. In the nature of honesty I sometimes feel insecure about her feeding tube. Prior to surgery I had an excuse as to why she refused to eat and now that she still refuses to eat consistently without explanation I have to just accept it. Every time I look at that tube I feel like I am failing my child. Every time I am forced to syringe feed her I feel like I am depriving her of thriving. I recognize this is an issue of pride but I sometimes just can't shake the feeling of failure. I sometimes cry. Sometimes I cry and beg Mike to explain why this journey has been so difficult. I sometimes cry and apologize for not being able to fix any of it. 

This journey is OUR journey. This season is a season. It will not last forever and I have to keep that perspective. This journey is tough sometimes but even in the darkest moments we are given small glimpses of light and hope. 
Thank you for reading this. Thank you for walking through this journey with us. Thank you for praying and thank you for loving us. 

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