Our Saving Grace

So much has happened since I last posted. Evangeline is now on an NG Tube. This is a tube that goes through her nose and into her stomach. It may be early to celebrate, but she seems to be doing very well on it. Before the tube, she was drinking every hour and a half day and night, not finishing most of her bottles. Now, she is only eating every hour and a half during the day, and we are all able to sleep some at night. She is also doing much better with finishing her bottles.

I debated for a long time about whether or not to take pictures of her. I decided that I, as a mother, would remember this anyways, and I need to document how she looked, and how we felt about all of this, and, if for nothing else, for her later. How amazing will it be to be a teenager, being able to look back at all she has accomplished? It will be a miracle. I can't wait to share this with her when she gets older.

Today we went out in public with the feeding tube for the first time. We went to the bank first, then lunch, then the boardwalk. I found out today that Most people assume its because she is so little that she has the tube. This is not so. I hate to get into details with perfect strangers, but they asked, so I have to tell them. Most don't really get "it". I even had someone tell me that she will grow out of it and that I needed to have faith.

I thought this would upset me, but rather, I secretly smile and know that yes, she will be OK, amazing even, even though she will have this for the rest of her life. There is no talking to some people, and it does no good to try to reexplain what I just told them. They can have their own ideas. We don't know them anyways.

I found that most people are very interested and really do care. I don't know if it is because we live in the south, or if people everywhere would genuinely care about her condition. I had hoped it would be like this, instead of just getting whispers and weird looks from people. At least now I can educate people about the importance of Newborn Screening and LCHAD.

I am so excited about this new phase in our little family's life. We may finally be able to get some much needed rest. I am so grateful to modern medicine. If she had been born even 50 years ago, she would not have survived. This little tube is going to change our lives. Already she is sleeping better. For example, last night she went to bed at 2. Tonight, she went to sleep at 11:30. Hopefully tomorrow night it will be 8!! We are hoping to be on a better "sleep and eating" schedule, instead of simply an "eating" schedule. We are tremendously blessed. I love my baby and I think she is so beautiful and so strong. I couldn't be more proud to be her mother.