Sunday, November 28, 2010

Back a little closer to home...

So we're back in the CCU! Since we've been gone they've upgraded the rooms with new all-in-one computers and televisions. We are back in the same room we were after Aurelia came back from her first PICC line, when her airway first collapsed and the NEC watch sent us back to the CICU. I don't mind this case of deja vu if it means we get to come back to the CCU instead of leaving for some place a little more urgent.

In sadder news one of our housemates, a wonderfully nice family from New Jersey, lost their CHD baby, Luawn, last night. She had a defect very similar to Aurelia's and unfortunately developed a secondary problem that resulted in her heart's ventricles never fully relaxing. As a result her heart couldn't fill itself with enough oxygenated blood between beats. Her folks got the call around two o'clock a.m. and when they arrived they removed all the tubes from Luawn's body and she rested peacefully in her mother's arms until she passed away.

It's a tough reminder about the dangers of a CHD when you see so many of these babies that fight just as hard as Aurelia lose their battles. We can only hope that what afflicts Aurelia cannot match her own determination and strength. When combined with the skill of this amazing medical team we have faith that our girl will give this fight all the will she can in order to live a full and healthy life.

Still, things over here are much better for our little A. She's off oxygen and the high flow and is only on a room air canula. She had a little gas this evening and so was a bit fussy, but our awesome nurse Laura (who has been nothing short of magical) takes such good care of her that with only a burp and some anti-gas medication our little girl is sleeping soundly.

we hope that the news about the NEC watch continues to be good and that after the treatment course ends Tuesday we'll get good news about a surgery schedule for Aurelia's hernia, nissen, and g-tube.

One last note - Grandma Dittrich left today for Connecticut after a two week stay and her help was invaluable. She took great care of Madison and Jillian, and poured out love on Aurelia. Madison is voicing all the words Grandma taught her and loved taking walks around the city with her Grandma. They read so many wonderful books together down in the play room and it was the first time in some time that all the wash was up to date and the room here at the house was clean.

We will all miss her much! Grandma and Grandpa DeAlessio arrive some time today barring any misfortune on the roadways, and we hope they make it here safe, sound, and in a timely fashion!


  1. Wow. I am so glad things are calming down again for you guys. I swear, every time I start thinking your stay at CHOP will be wrapping up soon something new pops up! It must be incredibly hard on you and Jillian (and Madison... and Aurelia most of all!). No one could ever prepare you for this but you and Jillian are doing a great job of loving Aurelia and also staying informed so you can be the best advocate you can be. I can only imagine how tired you both are. Hang in there and don't hesitate to call on us for help. PS I like the new theme!

  2. So glad to hear good news-your words seem so much lighter too. Will still keep all of you in our prayers and thoughts!