Two Kid Adjustment

Bryan and I are adjusting to life with two kids at home. My friend, Virginia, has been staying with us the past week to help out. We are so grateful for her help. Tomorrow is my first day alone with the girls. I’m a bit nervous. I have a whole new respect for all of our friends that already have two kids.



Jillian is doing well being home. Are biggest issue is trying to make sure that she eats and gains weight. So far she is steadily gaining weight, but she is slightly below what she should be gaining which is a half ounce per day. The weight gain issue is so important since one of the common complications of CDH is “failure to thrive.” Basically, Jillian needs to follow the growth curve for her age and weight or we have to start discussing the possibilities of having her on a feeding tube again. Before we left the NICU the doctors were asking Bryan and I if we felt more comfortable having her on a feeding tube that went in through her nose or one that went in through her stomach. We said, “neither.” I have a hard enough time trying to put a bandage on Katelyn. I can’t even imagine what our lives would be like if I had to daily administer food through a feeding tube. I was reminded of this possibility again when a woman called our house telling me that her son is a CDH survivor. We didn’t talk extremely long, but I learned that she lives just a few miles away. Unfortunately, her son has had many complications that resulted from CDH including still being on a feeding tube at the age of 11.


Since Jillian’s return home, we have been busy with doctor’s appointments and in-home nurse visits. Last week we met with the surgeon and Jillian’s pediatrician. We have a nurse that comes to make house visits twice a week and an occupational therapist that comes once a week to check on her. At the appointment with the surgeon last week, he commented that after viewing x-rays showing Jillian’s lung development on Day 2 after birth he felt that she had a “slim to none” chance at survival. (This was the person that initially gave us the most hope that she could survive). Needless to say she is doing remarkably well. A few of Jillian’s nurses at the NICU even commented that they thought she would have to stay in the hospital until early July.


It is hard to even explain how glad we are that she is home. She loves being held. I think we are making up for lost time. We are doing our best to care of her which also means avoiding crowds and germs as much as possible. (No outings with her to restaurants or stores. Some relatives have been meeting her on our front porch to avoid getting germs in the house). More than anything I just want her to have a happy and healthy childhood and adulthood. I don’t want her to have any limitations. I don’t want her life to be plagued by doctor’s visits and meetings with specialists. I want her to be able to play on the playground with other children and as an adult be surprised that she had once been such a sick baby.