Watch & Wait...

You know the feeling when you click "send" on an email and the second it says "sent"...you wish you wouldn't have clicked the mouse? It kinda compares to the feeling I had tonight...trying to explain some of the concerns I have to Charly's Charge Nurse. It's been almost 7 weeks since my sweet little Charly-Bell came into this world. She has been through so much...infection(s), sepsis, pneumonia, PDA Issues (heart), Chronic lung disease, bowel scares, brain bleeds (with permanent brain damage), and so on.

Although I don't live or die by her monitors, I am still very aware, and sometimes scared of what is happening to her and how she is being cared for. I sometimes find myself playing "papa bear" instead of "mama bear" - if you know what I mean? I try very hard to express my concerns kindly and appropriately, and somehow...I walk away feeling like I am the "trouble parent". I won't go into details, but I have seen a few things that bother me, and instead of sitting around stewing about it - I ask questions, and seek for clarification. I know that many times it's not about who is right or wrong, but how the "task" is eventually being taken care of. I also know that I am wrong a great deal of time, and I don't have the "world at a glance" perspective when it comes to medical care. I am so thankful that medical technology, and medical skill have advanced enough to help my sweet baby get through all that she has been through. She really and truly is a miracle baby.

This picture was taken on July 29th, when Charly was only 12 days old. We have come so far since then, and In some ways these LONG 7 weeks seem shorter when I see her progress. She is a very determined lady, and I am growing more and more protective of her. I feel so strongly that I have been assigned to be her advocate. I try so hard to keep a peaceful mind and spirit, but it's much more difficult than I could ever explain.
Here is Charly again on August 9th. Can you see the difference? Her eyes are no longer sealed shut, and she has her sweet little finger in her mouth (you also get a sense of how small she is by looking at the clothes pin...notice the comparison to the size vs. the size of her head?).

This is Charly as of tonight. She is growing, and has some pretty good days. I grow scared of the "roller coaster" and what each day will bring - which sometimes adds to my overall concerns. She is such a sweet little baby and I can feel her little spirit so strongly. She can't speak up for herself, so I have to play her interpreter.

Right now we are playing the "watch and wait" game. Charly is gaining weight. She has been put on a new conventional ventilator (which I was beginning to feel would never happen), she doesn't have any infections at the moment, she is slowing increasing her feedings (they still have no idea what's wrong...if anything at all with her bowels), and her brain swelling has stopped all of a sudden. We have many celebrations, and a few setbacks here and there.

With everything that has happened, and is happening, I am so grateful for each moment that I have with her! I feel better thinking about everything she has made it through, and continue to have hope and concern for my little Charly-Bell!