Our beautiful daughter was born 11 weeks premature at 1lb 4oz and 12.5 inches long.
She was born at 5:40pm at Strong Memorial Hospital in Rochester, NY. Because she was a micropremie she was taken immediately to, NICU and we were unable to see her until about 3:00am. It was the longest time I have ever had to wait. After I was discharged, we traveled daily to spend time with, get to know, love, and cherish our daughter. Once or twice a week we took the two year old with us, Caitlyn. She only got to see her sister twice but she was well aware of her presence and nicknamed her "Nina.” When she was born the doctors told us it looked like she had a genetic disorder called Crouzons, plates in her skull were fused together. We were assured this was not life threatening but she would require surgery at about nine months corrected age and again at 2-3 years old. She also had three holes in her heart and two of them closed before her death. Included in her complications was a diaphragmatic eventration. This became problematic because she also developed BPD Bronchopulminary Dysplasia. This is a problem for babies who need to be on a ventilator for extensive amounts of time.
As each milestone came and went, we celebrated Kristiana getting closer to coming home. At about three pounds she moved from an isolete to a crib, this was so exciting, to see her in a crib with a mobile over her to enjoy. This also allowed us access to her without having to ask the nurses to get her for us. She was extubated for a short time and this really gave us hope. Things took a severe turn for the worse. She was struggling to breathe and keep her oxygen levels up and was reintubated two weeks later. After an echocardiogram we were told her heart was not working well and the remaining hole in her heart was allowing blood flow to go backwards through her system. There was still a shred of hope. She was placed on steroids to see if this would improve her lungs that would allow her heart to work less strenuously. She was given a repeat echo that showed no improvement, the worst news we could have been given.
The last three weeks of her life I lived at a Ronald McDonald House so I could be with her, know her, love her, and let her know and love me. Pat had to return to work, so he was traveling daily after work to spend time with her. Even though most of the time I could not hold her, I spent hours with her, placing my hands on her, reading to her, talking to her about us, her sister, her grandparents, aunts, uncles, cousins, her house, her room, anything I could just to let her hear my voice and feel as much comfort as I could provide. There were times I was able to lay my head down next to her and almost fall asleep with her.
Pat and I held her and rocked her at the end,the nurses watched with tears as we comforted our beautiful Kristiana for the last time.
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