Mixed Emotions Part Deux

Review: In case you are just joining us, or need a refresher, our baby girl, Evie, has a rare metabolic condition called LCHAD. This condition is one that causes The Papoose to not be able to digest certain fats. Meaning, we #1 Must monitor her diet very well, to ensure that she gets the correct amount of the right fats that she can have and #2 make sure that she eats very often, as her body has no real fat reserve that she can get her energy from. So feeding her often ensures that she has the right Blood Sugar and energy levels that a growing baby should have. So, she is on Portagen for her formula, as breastmilk is too fatty, and when she gets older she will have probably no more than 5-10 grams of total fat for the day. She also has reflux. This means that occasionally, when her stomach is too full, she will vomit. So when she vomits, she loses what she has already eaten. This is bad for an LCHADer because she isn't getting the right amount of nutrition for the day that helps to keep her Blood Sugar up.

Problem: Because of this, we have been feeding her very regularly. Ranging from every hour to every 2-2.5 hrs. depending on her tolerance for the day. We just received a pump that goes with her feeding tube that we can use at night that lets us all 3 sleep. About a week ago, she vomited in her sleep and it got into her lungs, meaning she almost drowned in her own vomit (aspirated). Because of this I have been very, very, cautious when using the pump. We dropped the recommended amount down so that she isn't getting as full, and won't feel the need to vomit. This, of course, means that she isn't getting the adequate nutrition that her Dietitian says she needs as a 5 mo. old preemie.

Solution: So, as a result of all this, we have requested an Extended Care nurse come to the house and watch her at night, while we all sleep. I am torn. I believe that this is the best thing for all of us involved, however, at the same time, I also feel like a very inadequate mother for not being able to care for my own child the way she needs to be cared for. The nurse will be able to monitor her throughout the night and we can slowly increase the amount of formula she receives on the pump. My mind can be set at ease, knowing that a trained professional is in the room with her keeping her in the raised position and making sure that if she does vomit, she stays safe. On the flip side, I am a SAHM (Stay at home Mom) and should be able to care for her. I am feeling guilty. I shouldn't have to have someone come and look after my child. Is she going to be a glorified babysitter? Is this how other parents in my shoes would react? I feel like I could keep going on like this. Sleeping very little and handling it. After all, Like my wonderful hubby says "I went to handling school." However, again, on the other side, everyone keeps telling me I need my rest. I am wondering why I need rest. I don't work, I hardly keep up with the house, and I barely remember to take out the dogs. I can take care of her, just nothing else. Is that really a bad thing? I'm not convinced that even if I do get more sleep that I would be able to keep up with the laundry anyways. I am so completely against this in so many ways. Shes our child, We can take care of her. Or not. I don't know. I've been this long without sleep, whats a few more months? Although, I AM terribly excited about this. The prospect of getting sleep seems so marvelous. Does that make me selfish? I hate feeling selfish. I have been called that by a few people, and ever since then, I really try to not be that way. Things are so confusing right now. I wish I could see a clear cut answer. God seems to have dropped this in our laps, so, for now, I will go along with it. Just know, that I am doing the best I can, and please don't think I am a horrible mother for requesting extra help, even though I am a SAHM. I guess I just need a little reassurance.