Home At Last
They are finally home! Shannon had reflux for the first 6 months after she came home. My husband took care of Shannon at night while I took care of Catie. I went back to work (full time!) in August and my sister watched the girls during the day. After 2 months at home I weaned Catie of the Apnea monitor. It never alarmed for low heart rate. It was always lose leads. Catie slept with me in bed for 4 months because she ate every 2 hours and not very much at each feeding. Catie became symptomatic of the shunt being blocked at the end of August and I took her back to the emergency room and they transferred her to Syracuse where her neurosurgeon discovered her other ventricle was enlarging. He replaced the shunt and put another catheter into the other ventricle. She recouperated from the surgery and started eating better. She went from eating 1 ounce every 2 hours to 3-4 ounces every 3 hours. She started to sleep in her crib (sometimes).
Shannon was sleeping almost through the nights in her crib. Since she had reflux, we placed her on a pillow in her crib so she was elevated. Since I was up every 2 hours through the night I always checked on her. We took it out when she started rolling over to her belly. In January I took Shannon off her cisapride. Both girls developed BPD and had Albuteral mist treatments 3-4 times a day. Catie also had an Albuteral inhaler treatment. It seemed like every time you turned around they were coughing. Both girls had mild ROP with no surgery. Shannon was not seeing anything. It wasn't until January when we moved to a new house that she started to follow things (shadows). It took a while but her eyesight developed and now sees great!
We were told that Catie would probably end up with Cerebal Palsy. With the grade of IVH, the doctors were not very optimistic about her life. She has proved them wrong. She is such a social outgoing baby. She smiles and laughs all the time.
Both girls have seen an Occupational Therapist from UCP since they came home. They both started seeing a physical therapist. Since Shannon couldn't see for the first 11 months of her life, she is way behind in development. She has very high muscle tone in her legs. She won't bend them for you. She is very defensive when it comes to her hands/arms. Up until 13 months they gagged any time you put something with texture into their mouths. They are very quiet babies, who only cry when they are hungry, tired, or sick. They also see a therapist from the Blind Association. Catie has an eye that turns in slightly, and Shannon has a very bad nystagmus (eye jiggling).
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