The morning was again full of hope and promise. Our attending doctor still likes her respiratory numbers, likes her other organ numbers (especially end organ numbers), likes her feeding numbers, likes her heart numbers, and still wants to proceed to get that breathing tube out. Emerson was scheduled for an echo in the morning, and that would dictate the next steps. Our prayers is that the echo is the same at the very least, and a little better at the very best. So, we hoped and we waited for hours for that result to come back.
Andrea and myself are in the room with Em when she comes back. Em is sleeping, Andrea is writing in our blog, and I am doing a crossword (I am not very good with those, or just words in general). Our doc pops in and tells us the echo is essentially the same. Okay. We have learned in hospitals, especially critical states, and Dr. Mayman from Sunrise telling us, that same is good. So okay, we will take same.
Because it is not worse, she still wants to push for getting that tube out. They have backed off the vent but also backed off heavy meds. By far the saddest part we are seeing now is that Em is starting to feel it, and will cry. It is THE most heart breaking thing ever. It hurts our hearts that we just can't pick her up and comfort her.
Our doc and the surgery team were meeting today at some point to discuss potential outcomes. One option is still to wean her off vent, let the heart medication do its work, and see what happens. And wait for heart transplant. Another option is to go into surgery for a PA Band. This band helps the function, the heart could technically still get better with it, or it can hold over the heart until a transplant. I asked Dr. Mayman about it, and he said they discussed this option, but it is fairly new for dilated cardiomyopathy and Loma Linda has done more of them.
We have been told that we will know the direction tomorrow morning at some point.
The more I look into her diagnosis, the crazier it is. Just the numbers themselves of babies with dilated cardiomyopathy is crazy. Like 0.000012 chance of just getting cardiomyopathy, forget the dilated part. Usually when this is diagnosed, other (end organs) are starting to shut down because it is so hard to diagnose. Routine checks with the heart (listening to the heart) won't dictate anything, and the heart won't be checked on unless there is a family history. So, parents in our position usually do not fare well with their babies. The nurses have told us the same thing as well. For some reason, this sickness pushed Emerson over the edge and this was able to get caught a bit earlier than usual. This could very well save her life.
I can't stress enough the importance of family in our lives. Family has been nothing short of amazing. I want to give a special shout out to my sister Kelsee. She literally stayed with us a week straight. She was there from the very beginning, with the first tough days of bad, bad news, and to her stabilizing. She was able to talk with the nurses and doctors and be apart of rounds and to help us out medically. I wish I could keep her around the whole time we are here, but I know we can't. I just want everyone to know how much we appreciate and love her. ( and yes, the rest of the family as well)
I still am trying to figure out the direction God is going to use this in our lives. Because believe me, whatever happens, and I know my wife would agree, this is going to be something we are going to advocate the rest of our lives. Someway, somehow, we are going to get involved with children and cardiomyopathy. I don't know how, but I know we are going to help others going through this same thing. Because the road is long, the road is hard, so many tears, so many thoughts, so much crying, so much anguish, so many fears, so many worries...we now know.
We fight as one. God please help us.
Continuing to pray for you Brandon and family. The whole Faith family thinks of you everyday in this battle. God's blessings!
ReplyDeleteHi Brandon and Andrea,
ReplyDeleteI worked with Jordan for the short time we were both at the Rancho Santa Fe Community Center, I adore her, and we've been keeping up with each other through facebook! ;) Anyways first let me say you ALL are in our prayers. I have 2 heart warriors. Not the diagnosis or CHD that your sweet little one has, but a CHD none the less. I never thought i would be in the group of CHD but here we are with 2! (It's a group no one wants to be in) I know the stress, questions, uncertainty, sleepless nights, endless time spent in the pumping room (for andrea :)), countless hours researching, endless amounts of questions for the doctors, nurses,& the whole team, the grief, the heartache, the loneliness, angry, hurt, and so much more. I did almost 3 years of going through this alone (besides my husband) and finally finding Mended Little Hearts whom i met moms and families just like ours. I can't begin to tell you the relief that rushed over me knowing "we are not the only ones", there are others in our shoes and who have walked this path. They have become my right arm, my strength, my guidance, my family. I am praying, when you feel comfortable and ready, that you too will reach out and become connected as a part of this big, incredible, super loving family of MLH. I cannot describe the weight that was lifted and the overall loving feeling that has filled our hearts since finding this support group. I am now a Co-coordinator for our area and have become an advocate for not only my kiddos but for our local hospital as well. To say God works in mysterious ways is an understatement, no way would i ever dream of working with our local hospital and now here i am a Co-Chair for an advisory Council. amazing. I hope i've brought some comfort and not made you feel belittled or worse, I hope i've shed some light and offered guidance. I truly know to some extent what you are going through. I pray for Peace and guidance as you 3 travel this journey. I pray for comfort. I pray that God shows Himself to you throughout this journey as well. I pray you feel His presence in the midst of your pain. and I pray for sweet Emerson that she not be in pain and answers to come, just as the sun rises.
CHD sucks, but you're not alone. <3 Lydia, Heart mom to 2.