I have not gone over the edge, although a couple times the last couple days, I felt myself teetering. I know that yesterday was a bad day not to post after my not-so-positive post on Sunday, but it was a long day, I was tired, and I figured a
Jonah's breathing and eating have improved, although I still don't think he is eating enough. I think he should be eating at least three ounces every three hours, and although he sometimes drinks a full three, there are many times he won't take much over two. His weight is good (he weighed 10 lbs 3 oz when home health came yesterday), but I just worry about all the extra calories he needs to resist infection, heal, and regenerate new skin. Poundage is not really the issue. I know he's getting enough to stay hydrated, but he just requires so much more than a "typical" baby.
My mom took off work and stayed with me yesterday, Matt's Aunt Patsy is here with me today, my friend Gina from church will be here Wednesday, and then Matt's parents will be here through the weekend. Kim, Andrew, and the kids will be getting into town late Thursday night (although they'll be staying at Granddaddy's), and they'll be here through Sunday as well. I'm glad to be surrounded. I often think of couples or even single mom's who have to endure this cruel disease and the hard work it takes to care for a child with EB who do not have the extensive support network and awesome family and friends we do. I don't know how they do it. We are so blessed. And it's pretty easy to feel isolated even though I am surrounded, so I can't even imagine how lonely it would be if you truly were on your own.
Thank you for all your beautiful comments of love and support. They have encouraged me, although I still don't think I'm back to my normal self... hopefully I'm on the way. I appreciate your comments about anti-depressants, and it's definitely something I am considering. Maybe that's too personal to post to the whole world, but I'm definitely not one of these people who thinks if you need medicine to help you, there's something wrong with you. If I need help, I need help. I just want to keep an eye on it, and not rush into medicating myself to deal. If the isolated day lows turn into majority day lows, I'm all about getting some help. And I'll follow the same philosophy I did during child birth - BRING ON THE DRUGS.
It's crazy how you can love your kid so much, appreciate his life and the fact that he's here breathing and beautiful, be more thankful for him than anything, and yet still feel so frustrated, exhausted and completely overwhelmed at the same time. But I'm pretty sure that's an ANY new mom thing and not just an EB thing. Although I know the struggles of caring for an EB baby definitely magnify all of it.
Things are discouraging on the blister front. They weren't kidding about heat and humidity being bad for breaking down the skin. Jonah has new blisters on his face, hands, and feet. His two worst ones are on the front upper thigh of his right leg and under his right armpit. Those two are the kind that grow, and they've just kind of taken over. The one on his thigh wraps almost all the way around, and the one on his armpit covers it, his upper arm, and is wrapping around to his back and in the front to his chest. They are impossible to wrap and protect. It's so frustrating. He cried during his bath last night and when I was wrapping that arm and leg. Often times, I don't think the small ones cause him a whole lot of pain, but these (now large patches of raw skin) are definitely hurting him. It breaks my heart.
Continue to pray for him as we transition into hot weather. I hope once his body gets used to the change, it might adapt a little, but I'm not sure that's how it works. We may be in for a VERY long summer.
Can you store breast milk in regular freezer bags? These Medela bags cost $20 for a box of 50 (Sorry, Debbie. I had no idea.), and I'm going through a lot. Ideas?
And because I try to mask my Yikes-I-just-totally-exposed-myself posts with a little humor -
The other night my breast pump was saying, "Pay up. Pay up. Pay up." This definitely confuses me since I thought my pump and I had settled up on all our bets a couple weeks ago. I think I'm getting played. Stupid pump.