Feeding Frenzy

When I first started doing my research about HLHS and all of the complications that came with it, never in my wildest dreams did I expect for us to be home after just three weeks in the hospital. If anything, it made me even more anxious because I have read stories of people who were home before they were ready only to have tragic results. I hold Isabelle every chance I get, and know how fortunate we are in our circumstances. I also knew about the many trials and tribulations other parents had with feeding. Again, did not expect what we are currently dealing with or my reaction to it.
I feel like no one gets it, how important this is and how frustrating it is to do everything you are told only to have her lose another 10 grams. There are no words to describe this feeling of utter powerlessness over her weight and I am beyond overwhelmed at this point. We are adding in the extra calories, undressing her, tapping the bottle to keep her swallowing, feeding her when she is hungry, feeding her when she isn’t, the list goes on and on. The whole situation is making me crazy and I am getting more isolated in my misery every day.
This panic, in my opinion, is justified. I want her to be strong enough for her next hurdle and that isn’t going to happen if she doesn’t gain consistently. The next hurdle is going to provide some circulatory stability and hopefully allow us to be around people. So far we have had to miss a family barbecue and back to school shopping trips.
I was able to go for a nice long walk yesterday, but I wish the positive effect of the exercise stayed with me for longer than an hour.
I just wish I could figure this out, this feeding dilemma. I wish I could have some effect on her health other than shoving medicines down her throat and tricking her into taking them. I have never felt so powerless in my life over the well being of my children. I know people mean well when they tell me that this is a test and God doesnt give us more than we can handle. I’m sick of being tested, but smile anyway in spite of my overwhelming desire to smack them.
I don’t know what else to do, and I feel like I can’t leave my house, or do anything that helps. All I do is pump, fill bottles, watch her only eat half, and write down all of our stats so we can prove to Children’s that we are following directions. We have two appointments at Childrens tomorrow- one with the cardiologist, and the other with the nutritionist. I don’t even want to know what they have to say right now. I am so frustrated with everything.
To make matters more interesting, Adeline is constantly trying to get our attention. So on top of the feeding issues, we have a toddler who doesn’t understand that bouncing on the couch around us while we hold the baby isn’t a good idea.
I need to get out of the house before someone commits me. My mother keeps asking me what she can do to help. I don’t even know where to begin. I just feel more hopeless about this every day and there is nothing I can do about it.