Gillian was in the hospital for 93 days. I was not able to meet her other than our brief seeing each other at delivery until she was 2 ½ days old. I was so sick and unstable that I wasn’t allowed out of bed. I waited as patiently as possible. And I handled myself quite well until the NICU let Craig hold Gillian and I couldn’t go watch, that was meltdown #1 of many. I was allowed to be upset in the NICU until I was discharged from the hospital then Craig told me Gillian needed our strength and that I couldn’t be upset when I was at her bedside. I had an hour drive to and from the hospital so I would either be upset the whole way there or the whole way home. It would depend on how Gillian’s day was going whether I needed to be upset at all. Gillian was intubated for her first 33 days of life. While she was in the hospital she was treated for so much that I’m not sure what everything is anymore but the list I was given when she was discharged was: extremely low birth weight (a given in my opinion), chronic lung disease, respitory distress syndrome, possible sepsis, R/O NEC, metabolic alkalosis, apnea of prematurity, gastro esophageal reflux, ventricular septal defect, hypotension, anemia, IVH grade 1, at risk of retinopathy of prematurity, MRSA colonization, and metabolic acidosis. Gillian also received 7 blood transfusions while in the hospital. We had our good days and not good days. I always called ahead so when I walked in the NICU nothing would come out of nowhere at me…not a fan of medical surprises unless they are good ones. We followed the nurse’s advice about pretty much everything because it was our hope to make it out of the NICU as smoothly as possible. Rule #1 - only parents were allowed to hold her because the more people Gillian was exposed to the more that could infect her. We were offered to move her spot in the NICU when a window spot opened up but we figured the spot she was in, she was doing well why tempt luck. Looking back it is funny how superstitious we had become but anything we thought would help the situation we were willing to try. The very depressing part of being a long term in the NICU is watching people that come in after you leave before you…at first I didn’t notice and then I noticed but thought one day that will be us and by the end it would just irritate me. Not that I want to see a child or their parents suffer but I definitely felt by day 75 that I wanted my daughter home with me. I regret that I didn't wait for Craig to come home to help bring Gillian home. June 24, 2006 the doctor came in and examined Gillian and she looked at me and asked me if I wanted to take Gillian home the next day. Craig was downstate for work and he wouldn’t be home until Monday. I told the doctor that we were ready. Craig was unable to be there for our walk out of the NICU. I was so scared if she stayed in the hospital until Monday that something would happen and they wouldn’t let me take her home. I brought my Mom and Craig’s Mom with me to pick Gillian up on June 25th, it took 3 hours for them to get all the paperwork and show me how everything worked so she could leave the hospital. I cried so much during those 3 hours…everyone was crying, other parents, nurses, both Moms; it was a long time coming to get our girl home:)
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