Why we turned Lily's machines off....

(posted at night on 1/10/13)..Why we turned our baby Lily Grace's machines off on 8/29/12: 

Several people have asked me why Lily did not make it so I thought I would just share why.. We didn't have a choice. They kept trying to take her off of the ECMO (heart & lung machine) and each time she would last off the support for a shorter & shorter time. The first time she came off they said she was the ideal patient.. then after they removed chest tubes and said we could come back in her room she crashed right in front of my eyes..

They called me to say we could come back to see her but I was alone because I was pumping for Lily so I decided to come back by myself for a few minutes to spend time with her.. I walked in the room and she turned blue as I walked in... I asked if she was okay and I just knew by the look on the nurses face that she wasn't doing good.. The nurse later told me that she was fine through the surgery to completely take her off life support.. She was fine until I walked in the room. So as I stood there I saw my baby crash and people started running in her room to save her- her chest was open because of surgery and it had a thin plastic covering but you could see her heart pumping.. so they had to reach in her chest and do compression's until the surgeon could get back..

It was horrible., we thought we lost her then.. She was doing perfect and then... they even sent a chaplain to our waiting area.. no one knew if she would make it. Well she did thank goodness but they had to put her back on life support again. the next time they tried she did well again and then all of a sudden as I stood there talking to Lily ..I saw her heart slowly stop beating right in front of my eyes.. she looked at me the whole time too..,all of a sudden they called for help... "Get the board.. crash cart., Etc".. Chest compression's again and she looked at them the whole time... She was such a puzzle..

Thank goodness she made it again., the problem was the first time off life support she made it ten hours then the next maybe 6-8.. Each time it was less and less time that her body could make it.. she stopped producing urine at the end.. They asked me the Tuesday before she passed (2 days before).. They tried to remove life support and she couldn't tolerate it but for maybe 30 minutes., they told me that she was not going to make it and asked if I wanted to turn machines off..

I couldn't do it.. She was looking at me.. she wasn't in pain so they gave me another option to try one last time that Thursday... they would let her body rest from That Monday to that Thursday and try one more time to take her off machines if I agreed to let her pass if it didn't work that Thursday.. so I said yes... and prayed & prayed., well going into Wednesday morning she started to have bleeding in her belly.. She wasn't responding to meds as much.. so we made the decision to let them turn the machines off that Wednesday.. the doctors thought it was best rather than waiting one more day.. We said if she got worse or if she was hurting.. No matter how much it hurt us.. we would do the right thing for Lily and let her go..

We never gave up through my pregnancy or any minute afterward.. her body just couldn't survive for some reason., on her last day with us God blessed us with Lily being alert all day.,,she was awake and looking at us all day., it was the hardest thing we have ever done.. When we were ready I told them that I'm ready to hold Lily.. and that meant that I wanted to hold her while she passed away.. it was time to turn machines off., so after singing to her and spending every minute with her.. surrounded by 30 family and friends.. Lily became an angel in my arms after only 15 minutes being off the machines..

I can still see her looking at me while she was passing away.. Her last breaths., I can see it all like it just happened., I so wish and prayed that she would stay with us but fit some reason she had to leave..

Tomorrow my Lily would be 5 months old.. instead.. she is turning 5 months old in heaven. ♥ ♥ ...when she left me.. My heart shattered and she took a part of my heart with her..

Forever loved. Always missed.. Never forgotten.. our sweet Lily Grace!! 8/11/12 - 8/29/12 ♥