Paisley Hope's Arrival

We are a family of 4 that has learned so much about patience and peace.. We had our first son Parker and then we had Paisley Hope which was born at 31 weeks. I knew that something was wrong with her around 29 weeks. She was such an active baby and she went from being so active to nothing. I would go to the hospital and they would send me home drinking orange juice. The sugar in the juice would get her to moving for sure. I was so insistant that something was wrong with her and everything on their monitors checked out fine. So I was sitting at work the morning after I had stayed at the hospital the night before and I said I will eat these hot grits and if that doesn't do the trick I'm gonna go right back down there. So I called my doctor and told him that something was wrong I could just feel it. So he met me at the hospital and we did an ultra sound and she was already in distress, w/in 30 minutes I had a baby girl. Not expecting all of this to happen the sweet little thing didn't even have a name for 2- days. We have learned so much about life through this journey..We spent 5 weeks in the NICU and then headed home with an Apnea monitor which was really scarey. There would be so many times she would just decide to quit breathing which then scared the life out of us. This alarm is so loud that is sounds like a smoke detector going off in your ear. We had been so anxious to go home but then when the time actually come we weren't so sure that we were ready.I couldn't even hold her for 2 weeks..At the time it just didn't seem fair, I was seperated from her at birth and then the first time I laid eyes on her in the NICU she was on a venalator and the doctors told me they didn't have a crystal ball and they could not tell me if she would make it..Oh how aweful those words were. That was when I hit my knees and began begging god to please spare this little life.So were home and I just knew something was not right. I had noticed she had a few developmental delays. Off to Children's Hosp. we go..The Dr.'s never suspected anything was wrong w/ her but said a mothers instinct doesn't lie.So we do an MRI and it showed an excessive amount of white matter on the brain that is know as leukomalasia (I know the spelling is all wrong).. Total shocker for all of us including the doctors.So know we always have double pneumonia so we're transported to UAB and at this point we're told the swollowing study indicates we are asperating on thin liquids.We have to have a G-Tube placed along w/ fondo surgery.We come home on a feeding tube and told we may have something known as Leukodystrophy. The Dr. said whatever you do don't google it. So I couldn't get home quick enough to get a hold of my computer and we regreted it to this day. We did not have a diagnosis so why look into it like I did. About 8 mths later our Leukodystrophy panel came back negative (thank god).We are seeing several therapist and they seemed to think she needed SMO's (ankle braces).We have made countless trips to B-Ham and could not tell you how many different types of docs we've seen. We have been transported by ambulance numerous times.So we do a repeat MRI last week and it showed that the brain damage is not progressing. (Praise God) We also were told we didn't have to bolus feed her during the day we only have to put her on the pump at night because she passed her swollowing study.She went so long w/out eating that I'm having such a hard time trying to get her to eat.We are working w/ someone weekly and I'm seeing so much progress. We still don't have a diagnosis, but you know I'm so thankful for every Dr.,nurse, therapist and every trip we've had to make becuase not only has it helped Paisley Hope but it's brought us so much closer to god. Though having to resign from my job, I am still so thankful. I had 10 years in so at least I can freeze it..Our little man Parker has been so sweet and patient threw this journey with us.We had never left him before he was our life so this was a huge adjustment for him as well.This baby has been prayed for in so many places and I'm so thankful for each prayer that has been sent up for her. She is just a living testimony and as my pastor referred to her as "our little angel here on earth"..