In late December 2005 Libertys breathing started getting worse, I wished with all my heart that it would only be a minor cold and that it would blink by. I didn't want her to endure another hospital stay, I didn't want her to experience poke after poke, sleepless nights, and fear. I could no longer keep her comfortable at home, she was admitted to the hospital. That is when she got put on continious oxygen and is currently still on it. This stay was much different than the first, Liberty found a friend in every nurse, volunteer, and doctor that stepped into her hospital door. She was grins and giggles non stop, she thought it was absolutely great that so many people oohed and ahhed over her. Her happiness made it easier to make the hospital our temporary home. Spending months in a pediatric intensive care unit is emotionally draining. You will see pain, suffering, heart break, children pass on, and somehow with all that happening around you, you have to hold onto your hope and strength for your own child. You have to make sure you keep your head and heart together so you can be your childs rock.
During this time is when Libby said her first word. I left her in the PICU with the nurses to go get myself lunch one day. When I got back she was at the front desk greeting people. The nurses told me she asked everyone that went by "Momma?". My heart was jumping with excitement but my mind thought they are crazy, my baby doesn't even utter a sound (having had a paralyzed vocal cord for so long). I asked Mike about it, he said yes I've heard her ask for you a couple times when you are not in the room. Then later that night I heard the best thing I could ever hear, my baby saying momma.
Liberty was diagnosed with RSV, after many weeks of respiratory therapy they could not understand why she wasn't showing signs of improvement. Upon a closer look they realized Libertys fake piece from her heart to lung had completely disappeared. How she was alive was beyond anything the cardiologist had ever seen. Her scar tissue somehow helped with the blood flow to keep her alive. The surgeon stressed to us greatly that it was very unlikely Libby would survive. He assumed once he opened her up there would be no way for him to hook up the bypass, he said if this indeed were true Liberty would pass away immediately. Then we had to experience the worse thing I think we go through, handing our baby and her life over to those wonderful strangers. They rolled our sweet baby down the hall, she sat in the crib smiling, giggling, playing, the doctors were absolutely amazed with her. God held our babies hand and she survived the miraculous surgery. Within a couple of days Liberty was up and about, enjoying life, like nothing in the world could ever bring her spirits down.
We had a few bumps with the recovery, damaged left lung issues, wound infections, but on Libertys 1st birthday, March 2, 2006 we brought Lib home once again. She was on C-PAP at home with no sedation and no nurse. They usually do not let a baby leave the picu directly on C-PAP but they knew we did 99% of her medical care in the room, and that we would be fine at home. It was a rough road with the C-PAP, Mike and I got maybe 1 hour of sleep per night and that was in ten minute increments, but having our pride and joy at home was more than worth it. We could never feel bad for ourselves, we know that we are blessed to have Libby with us. We know we are absolutely blessed that she can walk, talk, play, sing. I watch Liberty when she's sleeping, I have to reassure myself often that her little chest is rising and falling, and with every single breath I see I thank God for letting me keep my Angel. She makes everyday brighter. She's the sunshine in my life.
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