Thursday, November 12, 2009

Blog within a Blog

Ok, so 20 minutes before I had to call 911, I was sitting on the couch... writing this blog:

Hey guys. Phew, last night was rough again. How long does one cold last?? I think I would rather have 3 whole hours of sleep than 6 hours of broken sleep. This morning we finally got to have the Occupational Therapist come to our house. I signed up for the "Early Steps" program that is state funded that send the therapists you need to your house. We signed up when he was about 2-3 months old but haven't seen anyone yet because we've been in the hospital. So finally today we saw the OT. We practiced putting him on his tummy by rolling up blankets under his chest so that his trach and G-tube didn't touch anything. She said that was her biggest concern is that he is not getting any tummy time. So we will have to practice tummy time this week. She is supposed to come twice a month but is going to come next week to get back on schedule. We are going to see a nutritionist, too. And supposed to see a nurse, but I don't know. Being a nurse myself really helps, but I guess another brain wouldn't hurt. Just wish the had an EB nurse around here... actually I think I've become an EB nurse myself. I've been told by a little birdie that I need a home health nurse for at night. It is something that Randy and I will think about.... but just a really scary thought. It's not easy trusting people these days... especially with your EB baby. It's something to consider and something I will look into. But don't think I won't kick a nurse to the curb if I don't think she's treating my little angel the very best. Us EB Mommies are tough, you know. We fight hard for our babies.

I know life is not fair, I've heard that all my life... but Tripp's life is really not fair. In fact, it sucks. Poor man is in so much pain all the time and been so fussy and miserable lately because of this stinkin' cold. I just want to SCREAM sometimes! And I know he does does too. I mean, my God... how much can one kid handle? Do you know how it feels when you gag and nothing comes up? Yeah, not a good feeling, right? Well he does that... let's see about 100 times a day. And what about that feeling when you actually DO throw up and it comes up through your nose and all... not good. He does that probably 5-6 times a day. Maybe more some days. Last night we went through 4 shirts AFTER bath time. And it just sucks... there's no other way to put it. As a mom, having to actually GAG your son all day long to get rid of his secretions, is really not an easy thing to do. It can kinda make you go a little crazy after a while. That is why I want to help... I want to do anything I possible can to help new moms (or any mom) who are new to this disease. I would give ANYTHING to know everything I know now when Tripp was born or a month old. If I would have known what I know now, it could have prevented a lot of sores and a lot TON of stress!! I know that my life is no where near "EASY" right now. But I would give anything to be able to find the time out of my busy day to help another Mommy that is going through what I'm going through (or have already went through). It would make me feel so good. I feel so obligated to do that, like it's the reason God gave Tripp to me. The reason He picked ME to be his Mommy. And when Tripp gets old enough (not anytime soon), I want to travel around the country to visit new EB moms and give them all of the help and all of the tips I can possibly give them. Because you know what, no one knows ow to help like another EB mom who has lived it already. When Tripp was born, it was the scariest thing that we have or will ever go through. As new parents (and newly married), Randy and I were confused, shocked, scared, pissed, sad, etc, etc.... There's no way to possibly explain it. You don't want to talk to anyone or listen to what anyone else has to say, because this is YOUR baby. You want to be able to take care of him and know how to fix things. But reality is... You don't. You need help... ALL the help and all the hints and tips that you can possibly get because this disease is SO rare. That's how I'm feeling right now. Because I am hurting, and I am teaching myself to deal with this.. it makes me want to help someone else who is starting out where I was... there is nothing scarier.

SO anyway, my thoughts are, "It has to get better, right?" We can only hope. There's only two things that can happen: it can get better or it can get worse. And if it gets worse, what will we do? DEAL. What else is there to do? GIVE UP? Not a chance. I know that this is a task from God. And it is not an easy one. I'm not going to say that I am positive all the time, because I am certainly NOT. I have horrible days sometimes. I lose my patience sometimes. I lose my temper sometimes. I lose my MIND sometimes.. but that is why I said it is a task from God. He knows that I will have those kind of days, but He also knows that I can deal with it... that after I have my meltdown, I will be okay and I can function to take care of this child. Because if you DON'T have those meltdowns... you will never survive. Because I promise that there is no woman or no mom in this world that can do what I do on a daily basis and not have a meltdown once in a while. You just have to know how to bounce back from it... and that's what's important.

God didn't only give this task to me... He gave it to Randy too (and our both our families). I just want to explain HOW absolutely difficult this is on our marriage. Neither of us asked for this to happen, or could have ever imagined this happening to us. We thought we had the perfect life... just married, bought a house, both had good jobs, now a baby on the way. What else could we ask for? And BAM... God said "Wake up."

And that's right where I ended when he woke up and started choking. So I guess God was pretty much talking to me through myself yesterday. Either that or the devil was saying, "Oh you think it can't be worse, right? I'll show you." Who knows. Which ever it was... all I know is that GOD was the one with me when the emergency happened. I know that for a fact. And that's all that matters.
I love all of you... even you guys that I do not know who are following us and praying for our son. THANK YOU. I can't say it enough.

Just want to show you one thing... this is him in the bed last night? Tell me that's not a good baby??



  1. Just wanted to let you know that I am praying for Tripp, you and your husband. I can not imagine how difficult it must be to make it through what you have.

  2. I couldn't stop thinking about you guys last night. We all said prayers for Tripp... My husband included. You (and Patrice) have shared and in turn shown us all the things we take for granted. You are a fighter and you will make it through. I can't imagine the burden on your marriage. I hope you can remember to say a little prayer for yourselves whilst praying for your beloved son. God desires you two to be happy, even during your war. I will pray that you and Randy remain soldiers fighting for the same goal side by side.

  3. Lack of tummy time isn't the end of the world. My daughter had VERY LITTLE tummy time as an infant. She learn to crawl and walk just fine. Sometimes with EB you have to pick the lesser of the evils. Even then, it's still not fair. I am glad he is doing ok for now. The same thing (mucus plug) happened to the son of a friend of mine and sadly he didn't have as a happy of an ending. Hopefully this hospital stay is a short one!

    I didn't know you were a nurse! A lot of other EB babies/kids have a parent who is a nurse when they are born or become one after they were born. I am not a nurse, but sure do feel like one sometimes.

    Tell Tripp Sami says she hopes he is better soon and can enjoy some turkey on turkey day in a couple of weeks!

  4. Tripp Randy you and the extended family remain in my prayers. Please let me know if there is anything I can do.


  5. I have been praying fervently for you guys. I so cannot imagine what you guys deal with on a daily basis let alone when something like this happens. I read Patrice's post from this morning and I have to say that God gave Tripp to YOU for a reason. You are the best mommy possible for him. I also think God led me to you for a reason. I just found out that a good friend of mine's newborn is having blisters. They don't know what it is just that he'll have it the rest of his life. I'm going today to talk to her about EB and share Tripp and Jonah's stories with her. Thank you for sharing your beautiful baby boy with us. God bless you.

  6. Just wanted to let you know, I've been following your blog for quite a while, but I don't think I've ever commented. Thinking and praying for you guys daily!

  7. yes, that is a good, sweet, dear baby you have.
    praying that you may soon be home and enjoying a long, calm, healthy time!

  8. What an adorable video!!!!! Praying for you all!!!!! It amazes me what a wonderful mommy you are. I know you feel blessed to have Tripp but he's so blessed to have you as well. Hugs to you all!

  9. Praying for your family & Tripp - that video was smiles through tears...thanks for sharing! You & Randy are so brave & that little guy is so blessed to have you both.

  10. I have been praying so hard for Tripp. He is one strong little guy. You and Randy are such strong parents.

  11. So...the only thing better than photos of Tripp IS VIDEO of Tripp! Beautiful. I am so sorry that had to be recorded in the hospital. I continue to pray.