Wow this day is just so unexpected. I know every visit is not like the last but it is just so unexpected when we you are almost traumatized by previous stays. Brinley is just..... gosh I dont even know a word big enough to describe her. Today she is pacemaker free and will soon have all her lines out so that we can hold her and she move a round. This time she is the oldest baby in here and it is very hard emotionally. To see these babies I cant help imagine them being our Brinley. An elderly couple just literally stopped by moment ago to ask about Brin. Eric explained that she just had her 3 open heart and they said she looked amazing and that their grand baby just had her first. I hope by seeing Brin it gives them something to look forward to. It is so true that God only gives what he knows you can handle. I never thought I would have to face anything to this magnitude but I am still here treading water and do what I have to for Brinley. It sounds selfish bc really it is not even necessarily something I will have to live with it is Brinley's heart. As her momma all I have to do is find the strength to stand each day and make sure she has the best possible life she deserves.
Wednesday, June 19, 2013
Monday, June 17, 2013
Watched a movie or heard a story and thought to yourself "man, I just don't think I would have the strength." That is my life right now, right this very second. Today I had a breakdown. I cried silently as long as I could but there are moments not matter how strong you are you just can not keep it in. Brinley telling me not to cry were the last words she spoke to me today and the first time I seen her 10 hrs later she was, well words cant describe. It is so hard to hold in the fact you just want to grab your baby and run away. To tell them to stop hurting her, to just let her be, when all they are doing is actually SAVING her life. Because of them she gets to LIVE. As a mom you would lay down your own life for your children. Please squeeze your babies extra tight tonight. I left my baby behind at hospital alone so that she may rest. The last thing I saw her do was try to pull her own ventilato
Wednesday, June 12, 2013
You know that feeling when you are on a roller coaster and you get buckled in and then you hear the chains clink and that sudden jolt and you start to move, that tightness in your belly, the lump in your throat waiting for just the right moment to scream, then your hands reach for that bar in front of you to hold on tight because you know you are anticipating all the up and downs, waiting for the moment to go over the edge? I have that feeling but I have nothing to hold on to and the screams are silent. I look that thrill ride everyday in the face and she laughs, plays and calls me Mom. I am so ready for a moment to just step off this ride and have that happy, excited feeling once again. Fighting tears all day but I know we are in good hands. God's hands.
Thursday, June 6, 2013
Looking back on these past 2 years I cant help but smile and cry. I have talked about our nurse practitioner many times and I will never ever forget all the words of encouragement she gave this scared, uncertain, 3rd time mom. The last time we visited she said "you know, this journey is a very scary one but it is not a bad one. Look at your baby now and tell me that you would change one single thing about her." I swear I want to bottle that woman up and every time I have an "I can't do this moment" I can reach in and take what I need from it to keep going. And going we have done. On June 17th Brinley will have her 3rd open heart surgery, the fontan procedure. In my mind I know that I am ready for this to be behind us but my heart wants to crumble every minute of everyday. How do you prepare? To sit in a tiny room with Dr's who tell you every thing that will be done and at the end remind you that with all surgeries there is a risk of death and then want you to sign your soul away to them saying you understanding and then take your baby away behind these big giant double doors and they expect you just to hold it together when you really want to scream and drop to your knees. But some how I will manage to stay on my feet and wait in a cold room with many other parents waiting on this beige phone in the corner of the room to ring and pray that they ask to "speak with the parents of Brinley Rodriguez" to tell us surgery has started, the Dr is currently augmenting her pulmonary artery, he is finishing up her fontan and she is stable and doing fine, the surgery is complete and it should be a little bit before we can see her but she is doing well. This surgery is expected to be 5 hours. I could say this will be the longest 5 hours of my life but that would be a lie. This past two years has seemed like an eternity. Brinley is everything I could have prayed and hoped for. She is my miracle.