Reminded

The emotions are hitting hard. Despite a positive visit with Kelsie's CF doctor and reports of a healthy baby with excellent weight gain, Nathan and I have still been overwhelmed with emotion as we are reminded that our sweet baby has Cystic Fibrosis. Since her diagnosis, we have been on a roller coaster of emotions . From the joy and excitement a new baby brings to the sadness and fear of this devastating illness, we have bounced back and forth as we have tried to process this news. I think recently there have been days where we have almost let ourselves forget. I have settled into a routine giving enzymes and meds and chest PT and that is becoming our new normal. And as we look at her and see health and normalcy we almost forget that the diagnosis is real and what it could mean for her future. But in actuality, I know we never forget it, we just choose to ignore it. That maybe if we just don't think about it, it will somehow go away.  I mean, we are doing everything they have told us to do, so that must mean she won't get sick or be hospitalized or have lung damage, right? She is going to have a normal childhood and be a picture of health just like I always imagined...this CF thing is just something that we have to manage daily but as long as we do everything right, she will be fine!? Or is that thought process just my optimism overshadowing the realism of what this illness could do to her? Deep down, I know what it all means, and I know I will have to accept it but, right now, I don't want to.

You may wonder why all of a sudden I'm feeling so sad especially after getting good news about her weight. Well, I talked with her doctor last night about the labs and she informed me that the levels assessing her nutritional status were slightly abnormal suggesting some malabsorption and malnutrition. I had told the doctor that her stools were slowly becoming more frequent and occasionally has the greasy appearance they once had.  So even before we found out her lab results, they increased her enzyme dose to 1.5 cap based on that information alone. (And as she grows she will need more enzymes anyway because the dose depends on her weight.) Her sodium was also just barely low, and her chest Xray showed some slight bronchial thickening and hyperinflation. The doctor emphasized that she was not concerned about any of the results, saw no need to do anything differently right now, and was still extremely pleased with how well Kelsie is doing. Still, it reminded me that no matter how great things look from the outside, CF is still affecting her on the inside. I also know that it is my job to look for subtle changes and be on constant lookout for any changes to suggest concern. Especially now as she is growing so quickly, this continuous assessment and reevaluation is vital to ensure she is getting the best nutrition she can. This all means I tend to be quite controlling of her care and have a hard time letting others help. The thought of letting someone else keep her, and figure out how to give her enzymes, and all her meds, and her chest PT, and make sure she is getting enough milk, but not overfed as to cause her to spit up and lose her enzymes is all very daunting. Please pray for my strength.