Thankful to Be Back Home

Sorry for such a delay in updates!  It is much harder to find time to do a blog post now that Aubree is basically back to her normal self of super active and not knocked out in the hospital bed on pain meds. :)

We are so very thankful, elated, and relieved to be home!  We had absolutely wonderful weather driving back home, and Aubree was a trooper the whole time.  We kept her on her Motrin schedule for pain, which seemed to manage it great.  Our house was spic and span thanks to my sweet sister Amber and friend Bailey who came and gave the house a good scrubdown before we got back.  Another sweet friend Sarah bought groceries to fill our pantry and fridge so that we would have some things to eat once we got home and not have to immediately go to the store.  Thank you all so much for making our homecoming stress free!  Amber also had a big pot of homemade vegetable beef soup warm and on the stove for us.  While the restaurant and convenience foods we ate while Aubree was in the hospital served their purpose, we were so happy to eat home cooked foods again after having to eat out so much. 

Speaking of food, Aubree has really taken to eating real food.  Anytime she sees us eating, she will fuss at us until she gets a bite.  She has had chicken and dumplings broth, noodles out of a pasta dish, tiny bits of steak, couscous, biscuits, cheese, homemade pizza crust, and frozen yogurt.  She is still loving Ritz crackers, apples, yogurt, baby cereal puffs, and some baby foods.  We are so thankful she likes eating real foods since bottles have never really been her favorite since she developed bad reflux (the reflux has been resolved for a while now). 

I would say Aubree is 95% back to her old self.  She is dancing to music that her toys play (this really is hilarious, and I have got to get it on video), jumping in her jumper, sitting up independently, and laughing at things she thinks are funny.  Last week on Friday, we discontinued all pain meds, and she is doing great.  All of her steri-strips came off after her first bath once she got home and her incision looks great.  It looks better that what I had anticipated.  Concerning feeding, Aubree probably takes about 1/2 or more of her bottles by mouth and the rest down the gtube.  Sometimes, she just wants real food and doesn't want the bottle.  Can't say I blame her! 

Aubree starts back up with PT this week, had her weekly weight checks and assessments from home health last week, and had a checkup with the pulmonologist.  The pulmonologist back home is wanting to be extra cautious about her not tiring out from a respiratory standpoint and wants her on cpap a little bit more and at a reduced pressure of 6 during the day than what we were discharged with.  It won't hurt anything, so we are fine with that for now. 

Also, we have asked you all to pray for Aubree's two Jeunes buddies who are her age, Madden and Will.  Madden, who had his VEPTR surgery around the time Aubree did, just had a successful extubation to cpap this week.  Praise the Lord for this!  Madden has struggled with a cold and a few other issues post op, and this extubation is a huge step in the right direction for him to get to go home to Florida.  I know him and his mom are ready to be back home because they have been at CHOP or Ronald McDonald House since October.  Please keep them in your prayers!  Will, who came for evaluation for VEPTR, got a good report of wait and reevaluate.  He is currently compensating for his smaller chest, so the doctors are going to see him back in 6 months to see how he is doing.  Please pray for him as well, for his chest to grow and for him to keep compensating well!  Will you also pray for two other Jeunes babies, Lauren in Texas and Zoey in British Columbia, Canada, as their families have important appointments coming up and big decisions to make regarding future medical intervention. 

Thank you all again for all of the sweet words of encouragement and prayer throughout this journey.  We are so thankful for you all and know that you all crying out to God on our and Aubree's behalf has made a tremendous difference.  The peace we have felt from God throughout even the rockiest of times throughout this process has been like nothing I have ever experienced before.  Thank you Lord for comfort in times of need!  We also attribute all of the healing taking place in Aubree to God's work in her life.  Thank you Lord! 

Here are some pictures of Aubree now that we are home sweet home!