My request!

I am so very tired so I am hoping this won't be to long. Lily is doing well, besides our little set back of projectile vommiting and loss of weight our main concern is doing well, which would be her heart. The doctors said hopefully it will stay that way for the next couple of years to give it a little break before its next beating. I do believe I offended the doctors when I asked this morning for a G.I specialist. They told me they will bring one up to see her if I really felt it was nessacary, which I do. They don't believe she needs to see one because they feel they won't say anything more then what we already know, which is nothing really as of right now. They have elimanated a few things but still have yet to find the cause of this problem, and I will not except Heart babies just throw up, and I will not except "we dont know why, but we might just have to accept this." There has to be a reason this is happening and until I have a reason I will not rest.

We are rapidly approaching a month in the hospital again, where has the time gone? It is sad that this little thing is holding us up, but in all reality, it isn't such a little thing. This all is so frusterating, watching all of this and not being able to do anything more then be there. I was told a few days ago that I was not allowed to hold her durring her feeds or right after. Seeing her feeds go over 2 hours of time and then we have an hour off, when exactly am I suppose to hold her. I asked the doctor specificly that, because if she is that sensitive we have bigger issues to deal with . They go down on her calorie intake and then back up. We were at 28cal a week ago, then switched her formula, went back down to 24cal, they went up to 26 cal today and she has thrown up 3 times already. The doctors told me we have 2 choices because she needs her extra calories, we can either give her large quanites and lower calories or small quanites and higher calories....she tolerates neither. They have her still on the 3 medications for her belly, Zantac,Previcid,Regnal, you would think all those would help but it hasn't.

She isn't bottle feeding anymore, we have a speech therapist working with her daily along with an ocupational therapist and physical therapist twice weekly. She has little to no head control, she sleeps like she has frog legs and her shoulders roll all the way back causing her chest to push out....that was caused from her open heart surgeries. They want me working with her, but that is proving to be hard with the schedule I maintain while down there. I get there around Midnight or 1am, and then go to bed around 4am, wake up around 10am after being up and down between that time. Since she is a step down baby now, which is good progress, we no longer get 1 on 1 care, not even 2 on 1, we are now on 3 on 1....so it makes it hard for the nurse to get in her room to calm her down. I can do pretty much everything but rounds. I know the moniters, the pumps, I can push meds, I can change NG tubes, along with weigh diapers and monitering spit up.....I log it on the board and the nurse charts it....helps her out and lets me feel like I am actually getting to take care of my daughter instead of leaving her care to strangers.

She has quite the personality these days, she has started to coo, and she smiles now. She melts your heart with that smile, she also has her pouty lip that breaks your heart. She has me wrapped around that tiny little finger of hers and I love every minute of it, the only thing better would be having her home again. All in due time, they are thinking maybe next monday we might head home, but we heard that 2 weeks ago, and a week ago, so I will believe it when i get handed the discharge papers and care insructions.

Well that is about it for now, when I have any new updates I will surely put them out. Thank you for all your continous prayers.

Much Love,

Jenna