Well my guess is that no one still reads this blog because I have been so terrible at updating. My laptop broke while I was in Minnesota and at night I just don't have the energy to sit at a computer to type ( and our office computer is a mac and I have absolutely no idea who to use it). So there is my excuse.. now let me catch you up on the last few months.
march through may was pretty mellow. We worked on growing and normal baby development stuff. She was hospitalized for 5 days for SVT, dehydration, rhino virus and adeno virus. Unfortunatly when Capri gets a cold her body just cant handle it so we almost always end up in the ER. Thankfully she was only in the ICU for one day and spent the rest on the main floor.
In June she went to the ER because she had 5 diapers that were full of blood. Blood that soaked through her diaper, her clothes and her blanket. I thought for sure she would be rushed to the ICU with some life threatening thing but the GI doctors were not concerned and after a day of blood work to rule out cancer they sent us home. This was also the day that we were supposed to finish our backyard and lay sod. I think Capri knew I didn't want to help ;) We were so lucky to have wonderful neighbors and friends spend their Saturday helping Mike and making our yard beautiful. After an emotionally exhausting day, coming home from the hospital to see a beautiful yard that we would finally be able to play in was absolutely perfect. We are so lucky to live in such a great town.
Fast forward a few weeks later (June 23rd) and we are back at the hospital for a planned surgery. This was so surreal because we have never been to the hospital on a planned visit. its always been E.R, ICU, life flight, emergency surgery. She was there to have a colonoscopy, endoscopy, bronchoscopy and echo. The bronchoscopy showed that her airway has a bone ( I think it was a bone .. maybe cartilage..I cant remember now) that is to short so when she swallows it doesn't protect her airway and she aspirates. Her ENT wants to wait 6 months and see if we see any improvements and if not we will talk about airway surgery. I haven't heard the results from GI but should know tomorrow if she has any allergy cells or celiac disease. Her echo showed that her tricuspid valve is leaking moderate to severe. Her open heart surgery was supposed to fix that so they are now talking about sending us back to Minnesota for a 2nd OHS. We should hear back from her surgeon on Monday what he suggests.
Home life has been pretty great. She is finally gaining weight ( 1 pound in the last 2 weeks) Insurance approved her formula so no more $1200 formula bills. We have had her off oxygen at night for about a month now but she has started dipping into the 70s the last 2 weeks so im not sure how much longer we will get to stay "tube free" .
We have made it 365 days since we found out about her diagnoses. Last year at this time I was just starting this blog. Scared to death that my baby was about to die. Mike and I laid in my hospital bed all night talking about where we wanted our family to be buried and how were we going to tell A and B that they weren't going to be able to bring home their baby. I started this blog to help me cope with the devastating news and a way to let my family know what was going on without having to repeat it 100 times. Now I have the beginning to a great story of our miracle baby's life. There are entries on this blog that I cant read yet because its too hard to relieve some of those days, but as she gets older I know I will be so grateful I wrote all of this down. So if anyone is still reading, thank you for staying by our side and caring for our beautiful daughter. I couldn't have made it through this year without you and I am so looking forward to having her second year be full of uneventful days and boring blog entries :)