The day we found out Ruthie Lou was a girl, my sister named her "her angel" and the moment she was born and whisked away, she immediately became OUR angel.
I wish there was an easy way to say this-Ruthie Lou is not coming home, not to our home at least. God, Higher Power, the Universe has sent us an angel to unconditionally love, care for and protect unselfishly but only for a moment. There is nothing in my being, in my soul or in my heart more gut-wrenchingly painful than experiencing the news of the last day or the choices we have to make in the days to come.
I wish there was a second opinion, a glimmer of hope or the miracle we prayed so hard to be true, but we have come to understand that Ruthie Lou herself, is the miracle we prayed for. Ruthie Lou scientifically should not have been able to survive her pregnancy and it is a true miracle that she did. There is no part of science able to explain how her precious little body was strong enough to develop and go undetected that she is so very sick. I don't want to go into details, they really don't matter.
I don't want to make her a "case study" to scour the Internet over, we have already done that and it is so very sad. Her chromosomal abnormality is not hereditary, not passed on from our genes, not something we did or didn't do. But as a result, she cannot survive on her own or unassisted from machines. Had we not been admitted to the hospital as a "cooling baby", which we now realize is unrelated to her current state, she absolutely would not have survived at home and we would have never known why. That said, she is not a case study, she is my baby, my sweet precious innocent little angel who CHOSE US to make good decisions for her, even when it kills us inside.
We have been faced with the absolutely horrifying and devastating decision of what to do and what is best for our baby. How do we honor our child that we love so much with grace and dignity and selflessly make decisions for her while we are dying inside but the decisions must be made?
I don't know anyone who has had to do this, I am glad nobody I know has had to do this, but I certainly wish we could talk to somebody who did. I wish there was a manual, an easy answer, something that we could walk away from feeling like we made a good choice. But even the good choice for Ruthie Lou will never ever be easy for us.
It is really challenging to look at any of this with understanding. But we have been able to find some blessings at the way things have happened. It has been a blessing is that she has been here in the NICU, safe, loved and comfortable. We hold her every chance we can, change her diapers, feed her my milk, take every part in her care that we can while trying to sedate her seizures that still to this point are uncontrolled. We have been blessed to have this time with her uninterrupted and alone that we wouldn't otherwise have had, to show her we love her, to tell her we love her, to kiss her, to get to know her personality and to stare at her absolutely perfect and beautiful little body, to be a family together for this moment.
So, as you have all been so graciously praying for Ruthie Lou's homecoming and health, please now pray for her to have comfort. We are unsure if we will be transitioning to hospice or keeping her here in the NICU where we/she is familiar, but she will not be coming home to our house, she wouldn't survive the trip. She will however, be moving on to the heaven that you believe in, to return where angels rest, to be healthy and free from pain.
Until then, we will be here, loving her, holding her, kissing her and giving her the dignity and grace to transition comfortably. Thank you for your strength, your love, your support, your understanding of this amazingly difficult and unspeakable time.
Please continue to hold us up, as excruciating as this is, we have not even approached the most difficult time yet and will absolutely need you to be there for us. I don't know how people survive this devastation, but somehow we will and we will need you to help us every step of the way.
I am mama of three beautiful babes; two sons whom I have the privilege of raising and my daughter who lived for 33 sacred days.