Monday, August 5, 2013

New every morning! Those Mercies sure sweep me up!

Since being home I was struggling with Exhaustion and the internal battle of having what it takes to walk this road all over again with our children. The hospital stay made me AWARE, too aware for my heart and minds capacity. I have learned to live in the moment, for the sake of protecting my mind and heart. If I think to far ahead it is to much to carry. 

If I stay in today, sometimes breath by breath I am a much more loving, compassionate and aware of others. In the medical world you can't live that way, everyone wants to remind you what's going on. For example, every nurse we had was baffled and wanted to talk about how on earth Genevieve was so functional as a "heart baby". How has she been at home with no machines or oxygen up into this point and then they insert a story with how there experiences with babies with a similar defect lived in the hospital. Or ultimately had a transplant or died. Yep, they are that Honest, I mean come on people, help a Mommas heart out! I know from experience in this world that Heart babies are some of the sickest and fussiest, that there quality of life is limited at best and that there parents live a VERY medically driven life. 

Well this is when I get to tell them about all of you praying and Believing for Genevieve and when I get to tell them about the promises I know whispered to my heart over her life. That she will live and that she will be "a woman of the people". To me she has become that, in her short little 5 months, she loves people, she would rather stare into someones eyes than watch any toy. Darling little heart winner indeed! 

So at home I struggled through and yesterday was exceptionally rough, Genevieve was unhappy, fussy and throwing up (which are all signs of shunt issues). So after figuring out the logistics we headed up to Children's Emergency Department and got her checked out. They did a shunt series, which x-rays and ct scans and everything looked good. Then they did a shunt Tap, which is where they take fluid out of the shunt to test for infection. They admitted us to wait on that culture growing and give her IV fluids and make sure she was not continuing to vomit. 

On the good side, she did well overnight and the cultures thus far have come back negative. The Neuro and Cardiology team are summing it up to post op drug rejecting, or a virus, that came and went fast. I am hoping and praying that is the case. We were up every hour snuggling, so sleep deprivation is in full effect again.

Somewhere in the process, between time with Mike on the way to the ER (so sad but true, where valuable time gets found in our lives), friends praying for me, a chat with a heart friend (who laughs with me at Hospital life, cause she currently is living here), and the perspective that Genevieve is Alive and that is in itself ENOUGH to Celebrate and remember daily. I have found breakthrough this morning in my heart. Time with people I love usually does that! You think I would know that about myself, still learning myself and learning to Believe in who I am in some ways too (whole other topic)!

I woke up with this verse on my heart and mind. I love it because it is true. When I can feel consumed by the overwhelming world of medical life, I am met just in time By God's intimate love, compassion and Amazing Faithfulness to help me again and again.

"Because of the Lord’s great love we are not consumed,
  for his compassions or mercies never fail.
23 They are new every morning;great is your faithfulness" Lamentation 3:23

Keep those prayers coming as this month is FULL of appointments and Dr.'s and we need time to prep in our house and mentally for this upcoming stint of me being away from home with Veve! Love to you all!