So, I got out today... to go to the doctor. Ha. Grammy and MeMe came with us to the doctor. It's so nice to have that much help when you do have to get out. Honestly, I'm pretty tough and pretty hard-headed, but I really don't know if I could take Tripp to the doctor by myself. Well, I take that back.. I COULD, but I would probably be a basket-case when I got home. I had a heart to heart with Tripp on the way to the doctor, because lately his oxygen levels have been really low, and his breathing has been a lot faster. I kept telling him, "If we have to go back in the hospital, Mommy might cry... You don't want Mommy to cry, do you?" He made Mommy proud, because his levels were good. Not saying that tonight they won't be back low, but if it means we aren't back in the hospital, we'll take it, Momma has oxygen at home. But what was funny is that we ate from a place called The Pita Pit today between doctor visits, but we ate in the car. Grammy and MeMe got a kick out of it, they said... "Poor Courtney gets out and she has to eat lunch in the car." It is just too big of an ordeal right now to take him in public. NOT that it would make me uncomfortable to have to suction him in public, but I just don't want to take him to a restaurant where people are sitting down to eat and have to suction him. Just out of respect for the other people eating... I mean that might really bother some people, rightfully so. So one day when he doesn't need to be suctioned so much then I'll get out with him. That way I can take him into the bathroom or something when he needed to be suctioned... right now I'd be in the bathroom every 5 minutes. That would not be enjoyable. But anyway, on the way back home we stopped at "Itsy Bitsy Me." It's a little baby store with clothes and toys... YOU KNOW Tripp gets a toy after every doctors appointment. I mean, it's only fair. So Grammy stayed in the car with him while me and MeMe ran in. I bought a tummy-time mat, which really isn't a treat for him because he HATES the very little bit of tummy-time that he gets. But MeMe bought him a cute toy! He's so rotten.. but that's okay, he deserves it.
I'm exhausted. Physically, emotionally, and mentally. It's tough... really tough watching your baby in so much pain. I want it to all go away. But I know that it's going to take a while for things to get better. I just hope that for his sake, it's not too far away. I talked to the insurance company about a night nurse at home, but they don't cover that. So, Randy and I will have to talk about it and make a decision. I wish there was someone we knew and we trusted that needed a night job! Yeah, wishful thinking, I know.
Man, I just want to warn you guys that if all is well and he is doing good... that his 1st birthday party is going to be a huge one. I keep joking with Randy saying that we're going to have hot air balloons, a petting zoo, clowns, and the circus. Ha. He gets real nervous when I start talking about it. No but seriously, it's gonna be something to talk about. Because it is going to be a celebration. They told us in Cincinnati that we would be lucky if he made it to his first birthday. And with Junctional EB kids, there is an 87% mortality rate within the first year of life. But like I've said a million times, Tripp is a fighter... he's gonna make it. I think it really has a lot to do with the care of these babies, too. NOT that the mother's don't WANT to care for their sick babies, but not everyone is fortunate enough to have the means to care for an EB baby. If we didn't have insurance, I assure you that we wouldn't be able to care for Tripp the way we need to. It's scary... his care is SO expensive. That is why I am so grateful for Randy's job and his insurance. (Not to mention that most EB moms cannot work.) We are so lucky and so fortunate to have what we have and have the support that we have. That is what I keep telling myself... it most definitely could be worse. It could ALWAYS be worse. And it's not easy to say that I feel lucky, especially when I'm suctioning Tripp and he's gagging, then throws up all over his trach dressings that I just changed (Ugh..), but the second that I even start to feel sorry for myself, all I have to do is look at him and look at how much he has gone through and is going through, and my whole attitude changes. This has taught me so much. Not that I am selfish, or have really ever been selfish... but this has opened my eyes to things that I never realized before. The little things that used to matter to me so much just don't matter at all anymore. It's crazy. He is my LIFE... he is the reason that I wake up every morning, the reason I can make it through the day. Who cares about make-up, a tan, or whether I get my hair done anymore. Those things are put on the very back burner. Now it's all about my little man and my big man... and trying to make our little family a happy one. It's not easy, but again... it's a challenge. And I love a challenge.
Thanks again for the support. Please know how much it means to me.
All my love, Courtney