Roller coaster

We were told that Ella's stay would be a marathon, not a sprint.
We were told that it would be a roller coaster so not to ride the lows to low or the highs to high.

It has been such a long journey. I felt that with her discharge from the hospital that the worry would maybe end, but I was wrong. She was very premature when she was born and continues with oxygen needs. Ella is going to have an echocardiogram tomorrow morning to look at her heart. They are looking to see if there is a cardiac reason for her oxygen needs. If there is, then she will stay on oxygen and come home at the end of the week. We will then be referred to Children's for a plan. But, from the sounds of it, simplified of course, Ella will likely have oxygen needs for 1-2 months and close follow up. If the echo is normal, then she will be tried off oxygen on Thursday as planned.

As time has passed, my expectations have been fluid. At first it was about survival of me and her. Then, a gradual progression of focusing on various medical aspects such as the form of oxygen she was receiving. The progression of weight gain. The transition into a crib and into clothes. Now the focus is on coming home. How she is coming home can also be adjusted. It is difficult, rough to envision what we have lying ahead of us or the unknown of what is ahead of us. It is best to focus on the present otherwise it really is too much to handle.

I think of all our friends that have gone through similar experiences and how healthy and happy their children are now. I look forward to being at a moment that I can breath and feel safe that she is okay.

I have been going through all this preparing and waiting for Ella. Now I just need her home.
I was hoping the only medical concerns she would be leaving with was a very mild case of torticollis and a small umbilical hernia. But, now lets hope and pray her echocardiogram is normal tomorrow and that her lungs just need to get stronger. The echocardiogram will be read at Children's so I probably will not hear back on the results until sometime on Wednesday.