Christmas & Other Updates

We had a wonderful Christmas at Ronald McDonald House (RMH).  It was definately different than any Christmas we had before, but Christmas was going to be different no matter what because we have Aubree with us this year.  We enjoyed video chatting with our families and opening presents together.  Aubree really did great ripping the paper on the presents and pulling items out of her stocking.  She really loved the old timey telephone with the pull along string, a baby kitchen for sitters, and the baby snacks in her stocking.  She especially like the baby cookies and ate them like a pro!  She has also had many Ritz crackers since then and gets excited when she sees them now.  We also took shifts (so that someone is always with Aubree upstairs since she can't come down) eating a very nice catered Christmas breakfast and dinner here at RMH.  It was a very special treat to have the normal Christmas fixings being so far from home.  Also, we made a nativity scene out of play doh to have a representation of the real reason we celebrate Christmas, and Deb and I made a couple Christmas treats to enjoy on Christmas day. 

While Christmas was a fun time of making new memories, we have especially enjoyed just soaking up all the time we can with our sweet Aubree.  We have been playing with her new Christmas toys and some old favorites, as well as reading lots of books, and helping her jump on the bed.  Lots of fun, simple times together!  We are trying to get as much play and quality time in as possible since we know she will not feel like playing (and definitely not as hard as she does now) for who knows how long after surgery. 

Aubree will be readmitted to CHOP on December 31st.  New Year's Eve in Philly!  All pre-op things will be taken care of this day and on January 1st before she is to have surgery on January 2nd. We can hardly wrap our minds around what it will be like for our precious baby to have to undergo such a major surgery.  While it is hard to comprehend, we are so thankful that no matter what happens during and after surgery, that Aubree is in God's hands.  When Aubree was born, she was gray as a ghost, not crying (and did not cry the entire time we were in the delivery room while she was receiving assistance), and struggling immensely from a respiratory standpoint.  God spared our sweet girl then, when He didn't have to, and for that we are so thankful.  God has allowed more joy in our lives in the last almost eight months with Aubree than we could have ever anticipated.  I have told people that we were happy before Aubree; we just didn't know how much happier we could be!  We praise God for our precious gift and trust in Him regarding Aubree.  He loves her so much more than we can (which is hard to imagine because we love this little girl to pieces!) and wants the best for Aubree, whatever that might be.  Of course, our hope and prayer is for this surgery to be successful for providing Aubree with the best quality of life possible with increased lung capacity to meet her respiratory needs long term.  We want our daughter with us and healthy as long as possible!  Thank you so much for the all of the prayers lifted on behalf of us and Aubree and her medical team.  Please continue to cover her and us in prayer in the days and weeks to come.  The peace we have throughout this process is a testament to all of the prayers of so many and the grace of God! 

Will you also please continue to pray for Madden, the other baby here at CHOP with Jeunes syndrome?  He had his first VEPTR surgery this morning.  He is out of surgery and in the PICU where he will stay for the next few days until he can be moved to the pulmonary floor.  Please pray for fast and full recovery for him!   His progress can be followed under Team Madman on facebook.  Also, please pray for another Jeunes baby who was born the day before Aubree.  His name is Will, and he and his family will be traveling to CHOP in mid-January for a consulation with the Thoracic Insufficiency Team.  These appointments are so helpful and informative, but also come with a lot of information to process and sometimes decisions to make.  Will's mom Mary has a blog that she updates about Will and their family here. 

Thank you to those of you who have sent us cards and packages of encouragement while we are here.  They really brighten our day!  Please enjoy the many pictures capturing some of our moments here in Philadelphia.