Hello everyone, I just wanted to send out an update on Lily and the family. The boys are doing ok....you know that this is starting to ware on them, they want mommy to come home and they want Lily to come home also. They dont understand why she has to stay at the Hospital so long and why the doctors can't fix her and make her better. I wish I could just magically make them understand what is going on....because it doesnt matter how much I try to help them understand I just cant seem to break it down into the kid terms they need to hear. The stress is so unbearing some days that I think we all could use a fun vacation but there is no time for such indulgents. That would be a luxery in our life now and we dont have time for those at the moment. Now about Lily, she is as well as she can be, her heart is doing fine, I talked with the cardiologist today and he said from the echo they did today her heart looks the same as it did after surgery....we just have to keep a very close eye on it. I asked him when he thought she would have to have another surgery...just for kicks...because I already know that answer...but he told me that they are hoping not for a few years. They are hosping that her heart will have time to gather some strength and try to heal to the best of its abilites before another open heart surgery but we have no guarantee's of when it will happen again. We just have to sit by and wait and watch he said. Not what any parent wants to hear but that is our life and it is what is to be expected. Now about her tummy....it hasnt gotten any better yet. She is still throwing up a few times a day and they have her on 3 different medications for it, Zantaic, Prevacit*, and Raeginal*(sorry for the horrific spelling but I haven't had the chance to write them down yet). They have also changed her formula again from Pregistamil to Nutramagin....all I can think of is how much it is going to cost us to buy those, WIC will pick up some of it but not as much as she will need....the inusurance will also write us a script for it but we will still have to buy some cans of it and from what I have seen, it is VERY pricey formula...My stress level is at an all time high, my milk production is slowly dying out....I want it to stay but all at the same time i want it to go...I am so exhausted as it is that I can barely rememeber to pump more then twice a day. I have been taking suplement to help it come back in but it doesn't seem to be helping....but then again if you don't remember to eat more then once a day doesn't seem to help much either. I made myself stay home a few nights back because I knew I was no longer safe to drive but even being that tired I could not sleep. I have begun to fear my dreams, they are all sad and depressing and I chose not to dream right now, so chosing not to dream means lack of sleep and restless sleep when you finally do close your eyes. The doctors have given me meds to help with my anxiety but I can't afford to take it and something happen and be so groggy that I cant wake myself up. I hate being terrified like this, but once again, I try to remind my self that such is my life and in time I will get use to all of it. I have good days and bad days, I have days where my tears are my constant compainion, and then I have days where I am in acceptance of life. I just want to hold Lily tight and make this world dissolve....I want to make sure she is safe and out of harms way but how do you do that when the battle lies within her body and you as a parent know, no matter how many kisses you give, how many hugs and I loves you, you can never make it better and never make it go away. As a mother your instinct is to nurture, to take care of your family and make things better.....what do you do when you cant do that.......Im sorry for my rambling....back to Lily, they are talking that if the Nutramagin doesnt work they will switch her to Neocate and if that doesnt work they will try Soy....and if that doesnt work then we will have to insert her NG lower, it will go from her stomach into her intestines......so we will skip the stomach all together so she CANT throw up....tell me...would that be getting to the route of the problems? no!!!!!! we would not figure out what was causing it...we would just be stopping it by skirting around it...yeah that makes SO MUCH SENSE!!!!!! (Rolling my eyes over here.....hope you picked up on my sarcasm). Then I hear the....well she is gaining weight even though she is throwing up so we might just have to accept it and send her home.....oh that makes me angry when they tell me that....under no terms will I accept my child throwing up after every feeding.....if it was spit up that is one thing but THROWING UP is a whole different situration...UGH...the doctors are frusterating...and they have made me angry once or twice to the point where I have actualy lost my temper in their presensce.... I have had the eyebrows lifted at me and the quizical expressions such as....where did that come from....or the...I didnt know she had it in her, type of expressions. I am known as an even tempered parent and laid back....well I am...up until you tell me that you are about to give up on the situation and admit defeat.....THERE HAS TO BE A REASON SHE IS THROWING UP....FIGURE IT OUT......I dont' think they liked when I said that.....UGH....frustration.....well....I will keep doing my research...and if anyone has 2 cents to throw into this and has an idea you want me to ask the doctor...by all means....PLEASE LET ME KNOW....I am grasping at straws right now...and I am willing for them to try any test to figure this out. OK....I need to run right now....as soon I have any new news to update I will. THank you to everyone who continues to pray for my sweet little girl....it means the world to me...I thank you from the bottom of my heart and no words can every explain enough how much all the support we have been given means to us. Sending our love, our hugs, our thanks and our prayers.Jenna and Lilyana!
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