Thursday, August 16, 2012

Home may be closer than I thought


The newest plan is Cecilia will get the g-tube, planning on next week.  The surgeon they want to do it is out of town or something, but I should know all of the exact timing details for this surgery after Monday.  So, most likely Cecilia will come home a couple weeks after this g-tube, as long as she is stable.  I feel like the doctors on her team all have conflicting opinions regarding her going home.  I feel like the Cardio's and some of the PICU are more positive about the idea of Cecilia coming home.   Well, her surgeon is definitely not so much fond of the idea of home because she is very fragile until the next surgery, and that I have 5 kids...  He spoke about the amount of children I have in his explanation and reasoning, which upset me.  Well that brings me back to all of the people who are quick to judge how "full my hands are" that they overlook how full my heart is!  Well, duh it will be hard to take care of Cecilia.  That is why I have done everything I can possibly do to educate myself on her heart defect... what families experiences are with it- so I am aware of the good, and most importantly the bad.  I've been so proud of myself for all of the research and dedication I've put into being as best informed as I possibly can...I don't understand the intentions of that conversation, but I totally felt judged.  There I found myself again doubting my decision in this hospital and couldn't help but wonder if I would be judged based on the size of my family somewhere else... especially now that lately in support groups, babies with the same condition born much later than Cecilia and had the same exact surgery went home 2 weeks later...If she does come home, I will probably harass the interstage NP  because I will worry about everything!  I think that is a good thing though, and could save her life in case something were badly wrong.  He said he was going to look into home nursing which would be awesome if we could get help like that.   

If she comes home we will be given a pulse ox that will use to check her oxygen saturation's.  I will make daily logs of her vitals like weight(they will also give us a baby scale to use at home), sats, ect.  And I put those in a binder that they gave me, and bring it in for her weekly check ups.  Before she would even come I would learn CPR from the hospital, and also take over her care at the hospital for 48 hours prior to discharge (to make sure I can properly give her her medicine and stuff).

Last night I did not sleep well, have been praying for babies in critical condition Hayden, who passed away today :(, and Albie.  Also babies in cath today, Jonas and Evan.  (I LOVE Evan's mamas blog, btw) Please pray for them!!!  My heart is broken for Hayden's family.  He just rocked his Glenn and last week I was admiring his beautiful smile on my Facebook timeline...

I am so scared that Cecilia will die, and even worse if she did and never knew any kind of "normal" life outside of the hospital, with her family that loves her.  I wish there was a cure for these heart defects.  And I am incredibly sad about a lot of things, but I am most certainly a stronger person and a better person for Cecilia being in my life.  I will never look back at my "old life" and feel that I was better off before I knew CHD, despite all of the added pain in my own heart since. 

I am going to try my best not to think too much about the home word, because the direction of her plans just keep changing.  Last week I was saying goodbye to some of our favorite nurses, expecting to be at baby rehab before they would be back to work this week...here is a picture of Cecilia with our favorite nurse, who we met Cecilia's first night @ the PICU.  It was the first night we laughed, and we finally felt like she was safe.  Whether Cecilia goes home, or rehab, or what, we will miss our favorite nurses.