Tuesday, August 14, 2007

What a day....

Today has to go down in the books as one of Maryam's worst. She pulled her feeding tube out of her syringe again, but this time it was in the middle of the day. Unfortunately, it was while I was trying to take a shower. I came to check on her and she was in a pool of milk. So, again, I had to bathe her, change her and her bedding all over again. "Do Over!" This of course ruined her day and consequently mine too!

Another day down without taking the bottle at all. This was one of my biggest fears when trying to decide to put the feeding tube in. I knew it would enable her not to take the bottle and it has. She went from taking 45-50 orally at every feeding to not taking the bottle at all. Its quite frustrating and I have no idea what to do about it. It feels like one of those "hurry up and wait" moments in life. I know she's not old enough to eat real food, but I don't want her to quit using her mouth entirely for eating, so I just don't know what to do. The sad thing is, if its this frustrating for me, I know it has to be equally frustrating for her. And that breaks my heart. I can't make her understand that if she eats she won't be hungry because she knows the hunger won't last long because it magically goes away. Well, its not magic, its the feeding tube and she knows it. She watches the food go through the tube into her syringe into her tummy. I'm not suggesting that she has put two and two together, but I am suggesting that she is aware of it. I'm grateful that she's intelligent enough to seem to have figured this whole thing out, but at the same time I wish she wouldn't have so she would think, "hm, I'm hungry, I should drink from my bottle." Instead, I get "hm, I'm hungry, I'm going to wait for Mommy to put the milk in the tube so it goes into my tummy without me having to get tired from the bottle." I wish there was a fix. I feel like I'm missing something, like I haven't tried something, but I have. And do you have any idea how frustrating it is to have people make suggestions to me about what I should try? Like I haven't tried everything within reason? FYI, I've asked, she's not lactose intolerant, she doesn't care what it tastes like, she's not old enough for real food, rice cereal takes more energy to drink than the calories its bringing in, and I've tried waiting longer between feedings. NOTHING is working. I'm sorry about the rant, but seriously, I hear it all day long. Everyone thinks they can do it better. I'm starting to feel like its me....fortunately I'm sane enough to know its not. And I know a lot of it is because everyone cares so much and wants to see her do well, I know that, and I appreciate that, really, I do! That's why I update you all everyday, because I know that you want to hear how our little miracle baby is doing. Its just been a rough couple of days and I know its not over. Again, I apologize for the rant, its not typical of me, but I had to get it out, for my own sanity.
Uncle Richard, if you're still reading this, I apologize for being short with you on the phone last weekend. I was in the middle of feeding Maryam and it wasn't going well. I hope you all are having a good time in Hawaii, wish I was there! Lord knows I could use a vacation!!!
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Christi said...

I bet no one else thought of the lap band I mentioned earlier today! ;) Keep up the good work mommy and take care of yourself too.

Anonymous said...

Oh shit, I wish I was closer to give you some relief. You can rant all you want, you have the right. Your little one probably has figured out the eating process, it doesn't surpise me, with those eyes, your in for it. Take a deep breath, you are under alot of stress with the move and all. My heart aches for you. Hang in there! Love, Marietta

Anonymous said...

Feel free to vent! Every mom needs to for some reason or another! We are here for you & are praying for you all the time. Hope things get better soon. We love you guys!
Julie & Anna (I am at my mom's!)