Sunday, April 13, 2014

Days gone by

Days have gone by, months have past, miles driven and tears wiped away, one day soon you will be home.

To our new blog followers and to the ones that follow, just a reminder, I just write, so things may jump around and not totally sound right but again I am writing a blog not a book.

As Rizza mentioned in her last post, baby Aria has passed. She is now an angel, now Marissa's new friend. We went to pay our respects to her family on Friday. It was great to see them, so positive and happy that she is not suffering and in the place God wants her to be. Since we have been at the hospital, about 5 babies have passed away. A few times we just noticed a family crying and mourning in a room, then the next day the room is cleaned out and soon after a new family, a new baby arrives. Sometimes we do not even find out until later, like Aria on Facebook or Jordan on Instagram. God bless both your families.

We do want to thank, and send out a hug to the staff, nurses and Drs. at the hospital. They are people too and have to experience the loss of life, especially when you are helping to care for these beautiful babies to stay alive. They have feelings too, but the next day they have to come back to work and be professional and continue to work as if nothing had happened. Our hospital family is, and always will be in our hearts and thoughts even after Maia goes home. She has been taken care of, raised and kept alive by these great, wonderful, caring people.

Nurse Angela sent us this great pre Easter pic of Maia (yes she has permission)

With that in mind, Easter is just a week away. We have celebrated almost all the major holidays with Maia and whatever hospital staff was on duty. We also go out and celebrate outside of the hospital with friends and family, we just have to schedule everything around our first priority, Maia. As we said before, we will not go a day without seeing our baby girl. I am not complaining, I am reflecting on how no matter where you are, or who you are with, as long as you are celebrating and having a good time that is what it's about. 

We had our regular meeting this past Thursday and all went well. We talked about how Maia has to get over this infection and go through her antibiotics, which takes 14 days. After, if everything is good, including all her blood culture results, then we can get ready for the second surgery, the Glenn. As long as it has been it feels like it came up quick. To be talking about the Glenn, then thinking about her coming home, it is all surreal. We all are still working and hoping that she will come home without her trach, but if she does we're prepared, ready and confident we can do her trach care. 

UCSF Child Life Department gave us tickets to the Giants game for today. We had a great time, and loved that even parking was covered. Thank you.
A video of Marcus hitting the ball, this will be his last time as he is now too tall... A pic taken by me, of Marcus, mommy and Nino 
Marcus, mommy and Nino

For those who saw our video of our adventure with Maia, did you see the alternate ending?  For those who have not seen the video, watch it until the very end, you will love it.... 


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