'How to'

The life of raising a CDH baby is far from easy. It's challenging and there is no 'how to' book to help us because CDH hasn't had enough research studies. There are so many unknowns and with unknowns brings fears. We do the best we can with the information that is available and make the best decisions we can. While normal parents with normal babies are celebrating babies first steps and looking forward to potty training and school, CDH parents are looking forward to the day their babies get the repair surgery and celebrating when they successfully get excubated. They struggle daily with feedings and jump with joy when their babies actually take a few sips from the bottle or eat a few spoon fulls of solids by mouth. Disscouragement and dissappointment are always nagging at us. While your just wishing your kids could or would pick up their rooms or not drag toys through the house, we're just wishing our babies could play with those toys and would do anything to have toys strung through the house. It's supposed to get better with time, that what they tell us. I read blogs and updates on other CHERUBS and take as much encouragement about the future Liam might be able to have from them. I look at how other CHERUBS have grown and what they are able to do now and I just pray Liam will be able to do them as well. Today I tried to feed Liam solids again. We went with sweet potatoes. Im trying very hard not to be discouraged that he doesn't like food in his mouth or gags and throws up. Its a daily challenge. Ive tried feeding him with the bottle and he refusses. Feedings are not easy on either of us. Liam gets overwhelmed, stiff and cries and I try hard not to be dissapointed. I have to thank God for G-tubes. The future is unknown for us so I try just focus on today.