Thursday, December 20, 2012

Staying in Philly and Fun Times at CHOP

Because of Aubree's extended inpatient stay at CHOP, we will be unable to come home before she has her surgery on January 2nd.  Just the driving time from here to home is 20+ hours and that is without stops for food, sleeping, and generally baby needs.  It took us about 2 1/2 days to get here and it would take about the same to get home.  If we were to go home, we would hardly get to spend a day or two there before it was time for us to turn and come back to CHOP for Aubree to be admitted for pre-op on December 31st.  Also, if there was any kind of severe weather like snow or ice, it could potentially keep us from making it back in time for Aubree's surgery.  We cannot miss this surgery date!  While we would love to be home for Aubree's first Christmas and have her around the tree opening presents, we would much rather stay here for her to have surgery so that she will be around for many more Christmases to come!  We will be staying at the Ronald McDonald House here in Philadelphia until Aubree has to be admitted again.  Derrick's parents have been staying there during this time and say that the volunteers there are very nice and make it as homey and fun as possible.  Please pray for us as it is difficult being away from home for so long.  Anticipated recovery period in the hospital after surgery is 10 days to 2 weeks barring any complications, making it mid- to late Janauary by the time we are able to go home. 

While staying in the hospital is not ideal, there have been some fun experiences.  The pulmonary floor in the hospital has 2 wonderful child life specialists who try to make the hospital experience more fun for patients.  They brought in new toys and books for Aubree to play with.  They have also brought in activities for Aubree to do, such as finger (and feet!)painting.  She was covered from head to toe in paint and had so much fun.  It literally just dissolved off of her in the bath, so cleanup was a breeze!  They also brought in a sugar cookie in the shape of a  gingerbread man for her to decorate.  She tried to eat the cookie like a big girl and did have a few crumbs of cookie and some icing!  She loved it! Aubree also liked playing with the sprinkles!  The child life specialist also brought Aubree the cutest Build-A-Bear that was donated through Bears for Smiles which donates Build-A-Bears to kids at CHOP during Christmas time.  So sweet!

Another highlight of the trip was meeting Madden, who is Aubree's age and has Jeunes syndrome, and his mom Mandy.  Like I mentioned before, it is great to talk with a family on a very similar road since ours can be so different.  We also got the two babies together for a photo.  We normally do not expose Aubree to any outside people except medical professionals and close family, but made an exception because Madden is also on strict germ prevention for the same reasons as Aubree.  Neither one of them is sick and haven't been exposed to anything.  Also, they can both look back at these pictures and know that they are not the only ones going through surgeries or that have such a rare disorder.  And they are both so stinkin' cute, we had to get their picture together :)  

Again, we appreciate all of the love from all of our family and friends during this time.  It is comforting knowing we have such a great support system back home and in our hometowns.  Please continue to pray for us and especially Aubree.  She is truly our joy and still smiles and laughs through all of her time in the hospital.  This keeps us smiling and keeps us going! 


  1. Love these pictures. What a cutie. I'm so glad you got o meet Madden and his Mommy too. PLEASE tell me if there is anything you need during your extended stay. Love you!

  2. You guys are so great! Aubree is blessed to have you guys watching over her. I know you will have a great Christmas together with your little miracle!

  3. Aubree is such a sweet little girl and so brave. We are praying for her everyday. Joey and Debra Hill

  4. I love to see Aubree smile! She sure is blessed with some awesome parents and grandparents! Missing you guys and praying that you can get discharged soon.

  5. Such a sweetheart you have in wonderful Aubree! And how blessed she is to have you two as parents. Glad to see that you have someone in little Madden and his mom to share with. There's nothing like someone who is going through exactly the same thing as you are to help ease the concerns and support each other.
    Although we miss you terribly, we are so grateful that the Lord sent you there so little miss Aubree can receive the medical attention she needs.
    Give the little miss a hug and kiss from us, and give each other a hug as well. And be sure to tell Derrick's parents how grateful we are to them for taking such good care of ya'll!
    Love to you!
    Merry Christmas!
    Lisa Floyd