Ruthie Lou has had very full days this weekend. I don't think she spent nearly any time in her bed! She spent quality time with her loved ones and heard great stories, got great advice and taught a few lessons herself. My favorite thing to do with her is to think of another blessing or miracle that Ruthie Lou has given me or the world. We have so many, I need to start writing them down. Some blessings are big, the important lessons in life, some are tiny, the small things we do everyday. Both big and small, all miracles and blessings she has brought on her journey have forever changed lives and my hope is that they continue to influence us for the rest of our own journeys here in earth.
We're going to Hospice today. We have been dreading this day and anxiously awaiting at the same time. We want so badly to be a family in our own setting, to do normal everyday things. We can't wait to take her for a walk, snuggle while resting watch a soccer game with her on the couch. Today, we getting to do those things.
It also marks the beginning of her transition. I wish that we had more time, but more time will still never be enough. We know so many of you wanted to meet her. We wanted her to meet so many more of you, all of you!! Those of you who did, were touched by an angel. And those who time didn't allow, an angel still touched your heart and trust me, she knows all about you. I talk to her all day about the amazing people in our life. Although my guess is, she already knows all about each and every one of you and that's why she fought so hard to be here.
I do know some of you are heartbroken having never met her but she will always be in our life, in our hearts and all around us. Look for her when she is gone, she will visit, she'll be the ladybug flying around you or landing in your garden (I will tell you that story later).
I may or may not be writing the next few days, I mostly do it when I have so much in my brain it won't settle until it's written down. But my request from you is to tell us the miracles and blessings Ruthie Lou has brought you, big and/or small. Please write it in our Guestbook for us to print and have always. If it is private please email me firstname.lastname@example.org
This is where the hard part begins, this is when we will need you most. Please continue to love us, please continue to pray. And if we cross your mind, please let us know, message us, text us. They do not bother us, we look at them when we need to be lifted up, you lift us up. We love you all so much.
I have been wanting to write so badly to tell you how beautiful our last few days have been. Writing has proven to be such an outlet for me, personally and also allows me to share with you this journey so that you may "meet" Ruthie Lou and be part of her life even if from afar.
Since Monday, we have had a roller coaster of emotions, moments of complete despair but also moments of complete joy, having the opportunity to share little miss Ruthie Lou with the loved ones in our life. Ruthie Lou herself, has had such wonderful days being passed between her mama and dad, grandparents, aunties, uncles & friends. Watching their expression as they stare lovingly at her and relish at how absolutely beautiful and perfect she is, it warms my heart completely. There was a moment tonight as we sat in her room telling stories, we went back and forth from laughing and crying and in a moment of pure laughter it occurred to me, this is what I want Ruthie Lou's life experience to be-full of laughter and lots and lots of love. Tears and laughter equally show her our true love and she has had so much of both since the moment she was born. I love sitting in the room holding Ruthie Lou and I could just sit there with her forever.
The week overall has been a blur, each day blending from one to the next. The amount of tremendous love, outpouring support, heartfelt messages & generous offers of help has been overwhelming to Chris and me. We are extraordinarily lucky to be surrounded by so many people who genuinely love us, even by people we have never met, it is amazing. Ruthie Lou has made such an impact in the last two weeks, she has taught so many people to show true love and compassion. In a moment, although I thought I already lived this way, Ruthie Lou has taught me to tell people I love them every single moment that I can, to value every moment and to not worry about the unimportant things in life, I hope that she has done the same thing for you. It is so unfortunate that we typically don't know our importance or how much we are loved until a tragedy strikes or someone passes away, I truly hope that this has changed you and that you have told the people in your life how much you love them and squeezed them a little tighter tonight.
It looks like we will be transferring to a Children's Hospice early next week. The location is absolutely beautiful and although it will mark the beginning of Ruthie Lou's transition, we are really looking forward to being a family outside of the hospital walls. Everyone at Kaiser has been so incredibly wonderful, we honestly will be very sad to leave them, overnight they have become our family, Ruthie Lou's family. But we really can't wait to do the normal stuff that families do, snuggling/napping with our baby, taking her outside to see the world and being able to sleep in her room with her.
Once again, I just can't say enough how much your messages, texts, and emails mean to us, they offer us such strength and support. Please continue to send them, even if we don't answer. We love you all so much and truly appreciate every single one of you, it's amazing how many people a newborn baby can bring together. Yet again another miracle of little miss Ruthie Lou, our precious sweet angel.
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.