Thursday, October 8, 2009

God sent us an Angel...

Okay, yesterday I was just tired of sitting inside and feeling really restless.  Randy was working late and Nanny was coming over after work, and I thought she might be up for an outing too.  So I decided I was really tired of using our TV trays to lay Tripp's mepilex and ointments on and decided I need something else to use.  So we went to Target.  Me and Nanny stood in the furniture isle for about 30 minutes trying to come up with a way that I could fit something else in his room, while Tripp stared at us thinking, "Oh Lord, what are they up to now?"  Again, he was such a good boy when I took him out.  Anyway, so we were about to just give up and leave when I saw this kitchen cart.  It was perfect for what I need, because I have to have a place to lay out all of his dressing pieces... and this cart can roll, so when I do his bath I can roll it towards us and when we are done I just roll it back against the wall.  So we bought it.  It's actually pretty cute.  See...

 We will see how it works out today.  So here's the little man's room... notice there is no crib, that's in my room!!

Gosh, I am DREADING bath time today.  The last bath was horrible.  He was kicking and screaming so bad I thought he was going to pop his knees out of their sockets.  We had to put another blanket under his feet because he was banging them on the bottom of the tub.  And that's enough to make me feel like complete CRAP.  Ugh, it's just this horrible yucky feeling I can't explain.  You can tell the second the water hits a raw sore he immediately goes wild and looks at you like "Mommy, that hurts, why do you keep doing it??" When we went to the specialist in Denver when he was first born and they told us some EB parents only bathe their children twice a week... I thought, "Wow, that's gross." Because the smell is just horrendous.  But I NOW understand why they only bathe twice a week... because it's painful for the poor babies.

I would just like to stress again what an absolute ANGEL he is.  I was talking to Nanny about that last night.  I mean, just imagine... I know you know what it feels like to have a blister (not good), but think having them coving your whole body.  He must just have a constant feeling of pain all over.  Not to mention the G-tube that was put in on top of a blister that hasn't healed yet and a completely RAW spot on the back of his head that he has to lay on constantly.  I mean, I could just go on and on.. How about the sores that are so bad in his mouth that I just want to CRY.  And I am queen of knowing what an ulcer feels like in your mouth... it hurts really bad.  Well his don't go away, they just gradually get worse as he gets more teeth and sucks the bottle every now and then.  Oh, and his fingers.. no nails, just raw and bleeding skin that have to have gloves over them all the time.  Nose... constantly stopped with dry, bloody boogers and he can't breathe.  Oh yeah, and you know how it feels to throw up so much that it comes out your nose and all... well he does that a lot.  And yet he still smiles like a little angel and he really only cries when he's hungry, dirty, or tired.  How he doesn't just cry all day constantly... I do not know.

While I am writing right now, Tripp is laying right next to me in the bed.  If I could figure out how to put a video on here from my video camera, I could show you... but I don't have my other camera.  He cooing like crazy.. like he never has before.  It's not happy cooing, but he's not crying, it's like he's fussing at me or something.  So funny! He's exhausted... I know this picture doesn't show him cooing, but this is him right now...

Then he finally cooed himself to sleep...

I think my favorite thing about him right now is how when he is fussy and crying, I can put my face right next to his and kiss his little cheek so soft while talking to him real sweet in his ear... and he will just calm right down.  If that doesn't make you feel like a million bucks, I don't know what will.  God, I'm just in LOVE.  He gets so much more fun each day.  I have no idea what my life was like without him.  I always said that I wanted to be a "stay at home mom" and I got exactly what I wanted... with a little challenge to go with it.  But that's okay... I've ALWAYS loved a challenge.  And boy do I love this little challenge... more than he will ever know.

 It's really been tough for Randy and I, too.  I mean, imagine your first year of marriage with a new baby, but throw in an EB baby on top of that and you have a big load of drama along with a lot of stress stress stress... But I think every day is getting better and better.  Don't get me wrong, there are always going to be bad days, but I think overall this has brought us closer.  It's not easy on your marriage when something like this happens and you have so many opinions and so many people who want to help.  It really challenges your love and respect for each other.  But we are working through all of this day by day.  Some days are wonderful and some aren't so good.  But we both know that God gave Tripp to us because He knew we could do it together and because He knew we had SO many people to help and SO many people who love us.  That is why I know that everything will be okay.  We are in good hands... all of us.


  1. Court, you are so right. All the stresses, all the drama can just go away in an instant when you can calm your baby down. It sounds so simple,but takes a while for most moms to learn and I'm sure its been an extra challenge with Tripp. The best part about it is knowing he wants "you". Your smell, your voice and your touch are so soothing to him. He knows you make it all better. I love it when you write, "God, I'm in love with him" Boy if I dont feel this way with mine. And there is something about the innocence of a baby that just melts your heart. Anden is the fussiest thing ever, but the minute I'm away from him, I miss him so much. And as soon as we are reunited, he hugs and kisses me like a million times without me even asking for it. I love it! It's like he just wants to say, "Mommy, I missed you sooo much!". It saddens me knowing the special bond that Anden and I share b/c I'm home with him and that I wasnt able to give that to my other children. We can so easily lose sight of the things that are truly important in life when we just go with the flow and do what we think is expected. Being able to stay at home is the greatest blessing . There isnt a day that goes by that I dont feel like I have been more than blessed by God. I'm so glad to know that you feel the same. Oh, and I wanted to mention...just a thought...I know that when my kids have cuts/scrapes/blisters it always helps if i wrap a towel around them when they first get in the tub until their bo bos get used to the water. Would it be possible for you to place Tripp in the tub with his bandages on and gradually cut or take them off after a few minutes. Maybe it would help with the shock of raw skin hitting the water? I'm not sure if this is possible with how you have to bandage him, but I just wanted to mention it. I love you guys so much and I'm still praying for you all and especially Tripp's pain. Take care, Jayme

  2. Hello
    I work w/ someone that I believe went to high school with you. Anyhow, I have been following your blog for several weeks now. Your little guy is adorable. I wanted to give you the address to another blog that I came across of another family with a son with the same condition as yours. Thought it might be neat for your too to meet online.
    Anyhow, nice to meet you and come visit our blog sometime!!