Thursday, October 18, 2012


Lots of stuff going on since the last time Cecilia was in the hospital.  She has had diarrhea since her Cath that seemed to get better, then get worse.  I would say it is pretty severe now.  About a week ago Sophia had 2 days of diarrhea, so it seems to be a bug that just took a long time to reach her.  She seems like she is in a lot of pain randomly, and gets inconsolable.  She started vomiting and our home care nurse was concerned.  After she called Cecilia's Cardio NP, we were told that we had to bring her back to the hospital and get her on IV fluids to prevent dehydration.   Unfortunately there is nothing to cure a gastric virus, so she cant come home until she is ready and able to eat formula again.  I am bummed and frustrated, especially since I take so many precautions to keep her from getting sick.  For the most part she is content, but she gets herself so worked up sometimes it is hard to watch your baby go through it.  I'm sorry I can't fix you Cecilia.  I promise life is going to get day. 

I guess I hesitate to ask for help because I feel like I have so much to prove all the time.  There has been a few back to back deaths in the heart world recently, and I am certainly more depressed than I can handle.  Cecilia going back to the hospital again so soon (last admission, not current) brings a lot pain in my heart for frustrations and events I dont want to talk about publicly.  I asked my mom for help and she came and made my kids dinner, let me vent, and got me a relaxing drink.  I'm sad that my baby is never going to be fixed.  I'm sad that she has lived in a hospital more than at home.  I'm sad that I am so worried and so stressed that I am not the same mom to my other kids.  I'm sad that my husband and I argue so much about things relating to Cecilia's health care and can't compromise.  I'm sad that the ONLY thing I can do for her is make sure she has the best care I can get for her.  I'm sad that anytime you put a grip on her she panics in fear that someone is going to stab her for an IV or drain blood.   This list can just go on and on and mostly I feel too vulnerable and misunderstood and alone to even talk about these feelings.  There has been 3 times in her 3 months of life that it really felt like I was losing her... moments in the NICU, the event after her G-tube surgery, and just before her Cath.  Her heart looked the best it ever has a week ago, and I still can't relax.   I feel hopeless.  I feel like I need to do something more but there isn't much else I can do that I haven't already been doing to make her have the best chance.

With that said, even though it sounds our lives are very gloomy, it isn't.  Here is some pics of our recent Halloween crafting, and some pics of Cecilia in between the last and present hospitalization.  I know I am biased, but I think she is really pretty ♥

A broken, 1/2 heart


back to being mostly tube fed

feeling worse and worse... the day we had to go back to UMMC.  Hoping she can be better and come home tomorrow.  Karl has to go back to work!  But I need him to stay home while she is hospitalized.  I just get 100x worse stressed when I am away from her.  I need to be with her.  Karl is with Cecilia as I write this, because he needed a break from the kids and being stuck at home.