Thursday, February 13, 2014

new friends

Hey princess, mommy is pretty dang proud of you today.  Capri is continuing to get better.  She drank about half of her feeds through a bottle today and had the rest through her feeding tube.  The doctors are very pleased with her progress and want to watch her over the next two weeks to try and finish getting her lungs to heal.  She also needs to still pass a swallow test before she can have real food or drink out of a bottle that doesn't have a slow flow nipple.  Her ENT doctors want to go down and look at her erosion to see how it is healing but the cardiologist doesn't want them to because it will put strain on her already very fragile heart.  She is taking lots of steps in the right direction and I am so happy that we are finally starting to discuss go home dates. 

I spent the morning with some moms who live in Rochester making valentines cookies.  It was nice to feel somewhat normal and be around other people.  I don't feel alone out here anymore.  I have my friends who keep me fed and bring me treats.  One who is even going to color my hair for me tomorrow.  Then I have my heart mom friends.  I have met the most wonderful mom Amanda.  Her son has the same heart problem that Capri has and went in for surgery on Tuesday.  He is showing Capri up and is already off the ventilator.  Im sure he is going to be up and playing tomorrow and will probably beat us out of the hospital.. He has such amazing parents and I am so happy for them.  There is another ebsteins mom that is handing over her son tomorrow morning for surgery with Dr. Dearani.  His is a very complex case just like Capri so if you could send little Nathan good vibes tomorrow to have a successful surgery I sure would appreciate it. I am so grateful to have met all of these other heart moms during our journey.  I have amazing friends and bar nun the best best friend you could ever ask for but people who haven't been through the trauma of almost losing there child don't understand to the full extent of what it feels like to go through this.  Having these other moms who I barely know give me this sense of comfort to know that everything is gonna be alright and I'm not alone.  I love all of them!

I have to check out of the Ronald McDonald house on Sunday because they are doing renovations and shutting down half of the center.  I will be moving into the best western.  I am sad to leave all of the families and all of the wonderful amenities but I am a little excited to be able to go back to a place that has a gym so I can continue to run at night.  I am hoping that it will be a short stay and Capri and I can get back to our family soon.