Last night and tonight I have so blessed to have gotten to chance to spend the evening with Clara. I work all day and head to the hospital about 4:00, so I can be there by 5:00. I am so tired, but so excited to see her the 1 hour drive goes by fast. Leaving of course is tough. I usually leave about 9:00 and get home about 10:00. Then the guilt sets in that I have missed saying Goodnight to Madeline and tucking her in. I don't think out of her 6 years of life I have missed to many bed time moments. Since I have been back to school, the reality is I have too. I find comfort in knowing that it won't be for long. They keep on going back and forth with the date, February 3, or 10th. A Monday for sure.

This evening was a little tough at the hospital. The medical supply company met me in Clara's room to give me some medical equipment and to show me how to use it. This was only the portable stuff. The in home equipment will brought to us at home soon, where we will have to learn that as well. Funny thing is that I have known it was coming. I set the time for us to meet, and really knew exactly what was coming. However none the less it was overwhelming. As much as I know we need it and have to have it. Inside I was screaming I don't want it. It's easy to use everything there in the NICU, but to think this all has to be with us everywhere I go is just so much. It literally fills up the bottom our stroller and then some. I know that just like doing her first trach change the anxiety before hand is the worse. It's crazy that after all we have been through, sometimes it all just feels out of my realm. Almost surreal. If that makes sense.

So after that was over the ENT resident came to discuss Clara's Bronc that happened today at 1:00. It seems the stunosis is worse than before before. The scar tissue has grown. It is narrowed above her vocal cords and below. I was shocked that was even possible, but it is. I asked about the vocal cords, if they were damaged. She said no but that they look closed because there is so much scar tissue below them. So she believes she will not be able to make any sound (talking, crying, babbling) with the trach until she has reconstruction surgery which will be maybe 18 months, 24 months? This was a blow to me because I held out hope that we would eventually hear her. And I am just going to say it...it makes me sad that we will miss that. Noise....just such an everyday thing that we take for granted but something so precious to me. I know she is drinking from a bottle and that is HUGE! But I also wanted just a day of her noise.

Even after everything we have been through and everything we have to be thankful for, I still feel loss. I guess that surprises me sometimes.

I have been told that Clara is the queen of the NICU. She has been there the longest. A few 25 weekers that came right before her have already gone home. So now it's our turn. ..... still waiting for the exact day. Soon they tell us.