A Courageous Heart

Well busy week for Sophia and family! We did lots of physical therapy on the mats and in our tumble chair. We worked more on our bottle. Family has also been working very hard on getting their check offs and training completed for Sophia's care.

Wednesday was a surprisingly busy day. Sophia had to go down for an ECHO and a VCUG on her kidneys. We haven't had a busy day of screens like that in a while. Sophie did awesome on her field trip to the labs. She held mommy's hand on the way down and back and just looked around. I had to wait around until Friday night to hear the results of the labs. I must say I have really great news. The ECHO results came back and ONE of Sophia's holes in her heart has CLOSED!!! Closed...YAY! I was so happy I cried and then Sophia and I did a baby happy dance. AAAHH wonderful news. Her heart is on the mend. Her PFO closed on its own, but we still have the PDA and slight elevated pressures. Overall, they said they were pleased with the ECHO and that Sophia is on the right track. I just love hearing good news. Its a wonderful change in pace. She is such a fighter and everyday she amazes me by overcoming the odds. The VCUG results can not be official read to me until the renal doctor writes his orders. They did say it did some some slight reflux into her kidneys. I am assuming since it has taken three days for them to write for anything that perhaps it isn't that bad?!?! We hope so right. They have also adjusted Sophia's vent settings again. They lowered her rate by two again. I think they are going slower on her adjustments now because we are looking to start vent training. So far, she is tolerating the home vent and lower settings like a champ! Sophie bug is one amazing little lady. So proud to be her momma!

 The next two weeks are going to be really really busy for Sophia and family. Hopefully this weekend all of the trach check offs will be complete. Monday we are scheduled to have our 8 hr vent class and the rest of the week is scheduled for individual 8 hr vent check off days. We are making progress and moving forward! After all of the vent check offs our complete then it is on to individual shift training. Each person has to complete an 8hr and 24hr day with Sophia. During that time, the nurses do not help with anything. So it is practice just as if we were home. Im so ready, are you:) Oh and this is exciting news also, our double-wide red wagon is here!! Which is a sign home is on the horizon. Remember the red wagon is what I have to pack all of Sophia's travel gear in. They have also asked that we bring her car seat up for a car seat study. That car seat has been in our car and ready for Sophia since we originally drove to the hospital December 27 at 5:30 am. 95 days later and they are finally ready for it. 95 days later... I can just cry now thinking about that dearly desired drive home from the hospital. Can you imagine it. Deep breaths....I just can't wait to take that journey home with my husband and sweet little girl. It is going to be a dream come true.