Last year on February 2nd, we brought our little girl home from the hospital after 4 months in the hospital. I was so excited and nervous to bring her home. I was excited to finally all be together at home, but was overwhelmed with the lack of sleep and continuous work. She came home with oxygen, the apnea monitor and 3 medications (Iron, Lasix and Prevacid). It seemed impossible to be able to care for 2 high needs babies plus all of the equipment. I can still remember all of the details so vividly.
Kylin came home and suddenly decided that she didn't have to eat. She would take 15 cc from a bottle and then quit and just refuse it. It was so frustrating and it was such a helpless feeling to not be able to convince her that she needed to eat. After a day and a half at home with us, Kyle had to go out of town for his National Guard drill weekend. I was at home all alone with these two babies and I panicked!!! He made a few phone calls and sent an email out to his rugby club asking if anyone could lend a hand over the weekend, because he had no choice but to leave. At 10pm (2 hours after he left), a very nice man from Kyle's rugby club called and said "I can come over and cuddle some babies." I was a little nervous, because I hadn't met this man in person before, just heard about him in conversations. How could I refuse! He came over and snuggled with Kylin on the couch and I had Preston in bed at the time. He said why don't you go and try to nap and I will sit here with her. Ugh, I can't leave her with a stranger, but I was just exhausted and so I went to my bedroom and crashed!!! He sat in the same position with her for 3 hours and snuggled and sang to her so that I could take a rest. How nice! The next day, 2 women I work with came and helped all day and then Aunt Kari came to the rescue and so did my friend Angie. I never would have survived those first 3 days alone without their help. Over the course of the weekend, Kylin continued to refuse to eat, so by Monday I told the pediatrician that I was not taking her home and trying anymore "tricks" to get her to eat. I was so nervous that she would "starve" and I felt helpless. Thankfully my pediatrician agreed, and Kylin was re-admitted to the hospital after 5 days at home.
Going home (the first time)
1 year later at home (I need a nap)
Going home as a family of 4!
View from the backseat full of babies!
This year, we are working to eat more by mouth, but we have the g-tube to assist since we aren't quite there yet. Kylin has come so far in the past year, but eating still isn't her game yet. We will keep working at it!
Happy 1 year anniversary coming home day Kylin!!!
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