Doctor Day

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

Pouty Post

Hey there.  It's been a rough two days.  Tripp is so miserable that I just want to cry for him but I'm too exhausted to cry.  His secretions are constant... and I mean constant as in THEY NEVER GO AWAY.  He is so frustrated by it and so am I.  I am going to try and make an appointment with the dentist tomorrow if I can.. hopefully she will have an opening because I don't think I can go one more day feeling guilty for not doing something already.  Did I tell you he is getting molars??? YES, two molars at the bottom and I haven't even checked the top because I'm scared to.  How miserable must that be?  The four teeth at the top and the four at the bottom are rubbing so much that it looks like he has an extra lip at the top and bottom.  He's rubbing his face and ears so much that I'm now popping new blisters on his face and ears daily.  His ears are RAW.  He's getting Motrin and Tylenol rotated around the clock.  I don't know what else to do.  He hates the orajel and it's too big of an ordeal with him for it to only last 10 seconds.  THEN, when we bathed him when we got home Friday, he had a blister the size of about 4 quarters put together on his leg.  Don't know what it's from, but I know that it was HUGE (the biggest he's had),  it was FULL of fluid, and it hurt him when I popped it.  Tonight is bath night and I'm scared to see what it's going to look like.  I hate this for him.  I hate that every day is a struggle.  I hate not knowing when something is hurting and not being able to help him.  It's so hard to explain how I am feeling.  Which brings me to this....

I just want to share with you the "you know what" that I have to deal with BESIDES the fact that I have to care for my sick baby.  I got an e-mail from this random woman today that I don't even know.  I won't write exactly what it said because some of you would probably go crazy like I want to right now.  But it stated pretty much that
1.  She was disappointed that I had "bashed" the ER staff
2.  That I should not have verbalized what happened (I guess telling me how to write my blog)
3.  That she couldn't believe that the staff would not have reacted to the situation (calling me a liar)
4.  And that I needed to count my blessings
First of all, the only thing I wrote was on caringbride and it said that the ER nurse just stood there when Tripp wasn't breathing through his trach.  I stated nothing other than the truth.
Now, I know what you are thinking... Why waste your time even writing about this?? WELL, because if you know me, you know that I do not get over things quickly.  I feel like this made me SOOO furious that I needed to get it off of my chest.  Who are you to call me a liar when you weren't there?  And who are you to say that the nurses did what they were supposed to do when you weren't there? And if anyone counts their blessings... IT'S ME, because I thank GOD every night that my baby is still alive and still here for me to hold and love and kiss.  I don't deserve to receive an e-mail like that from someone who doesn't have a clue about me, our life, or what happened.  And I let her know that.  Why do people like that even read other people's blogs?  I guess they go around reading blogs and trying to decide how they can make people's lives miserable.  SO, on that note... I just want to say thank you to the people who follow our family, read our blog, and pray for my son.  And if you don't agree with everything I say or do, thank you for not verbalizing it to me because my life is hard enough... I don't need any added stress or sadness.  I love all of you for that.  You read what I have to say and you accept me for it whether you think it's wrong or right.  Thank you.

Sorry to have a "pouty post," but it's definitely just one of those days.  There is just no way to explain our lives to anyone.  I can't even leave my house at all.  Especially not after what happened, because I would never put anyone else in that situation.  It's hard enough for me to know and remember what to do when something happens and I've been with him every day for 6 months.  But to leave someone else here with him is another thing.  EB is scary enough, but to add a trach to that is pretty intimidating.   I would never forgive myself if I left and something happened.  Maybe one day I will feel different, but not yet.  I know I need to get out, I know I need time for myself... and one day I will think about myself, but not now.  Little man needs me here.  Sometimes, though, I just feel like I'm gonna lose it and then I'll be okay.  It's weird.  I guess God knows when I'm about to lose it and He carries me through it again.  That's the only thing I can think of.  Because it's such a strange feeling.  I want to cry all the time... and trust me- I AM A CRIER.  I used to cry at the drop of a hat (even if it wasn't my hat!) Now, I cry every now and then... like when my baby turns blue, but overall I feel like I've been so strong.  I just don't know how.  My Paw Paw passed away a few months before Tripp was born... I know he is watching over me.  He was such a strong and brave man... I bet he's helping Tripp be strong, too.  I wanted Tripp to meet him so bad and I miss him so much.  If you're reading, Paw Paw... thanks for all the help! I'm trying to be as strong as I can.

I love Tripp so much.  I love his big ole' eyes that can tell a story whether he is mad, sad, or happy as a clam!  I love his hands... as painful as I know his little raw fingers are, he grabs a hold to our fingers and never wants to let go.  I love his belly-button- it's just a little pink scar with a little indention, but it's so cute!  I love his feet... OH how I love his little "happy feet."  We call them "happy feet" because he wiggles them when he gets excited.  I love his new smile-  it is so cute when he wrinkles his nose and his eyes get real squinty.  I love his cheeks- bo-bo's, blood, snot, and all... I kiss them a total of about a million times a day.  I love his demeanor- sometimes he will let you kiss and love all over him and smile, but other times he will fuss when you even look at him- like "Lady, I need some alone time."  I LOVE HIM.  Every inch of him.  And I would move mountains to make him smile.

GOD BLESS all of you that love my baby.  Thank you, thank you, thank you.

Happy 6 Months, Big Boy!

Here's that smile I'm talking about.. haha! LOVE IT.

And this "soft sock" around his head is a temporary fix so that he doesn't rub his ears off.

By the way, this sock is clean and never been worn... ha

Home again... with our Mini ICU

We are home again! With a mini ICU.  Here are the supplies we've accumulated since Tripp was born:

His feeding pump...

Humidifier...

Suction machine and Pulse Ox...

Portable Suction...

Apnea monitor...

Portable oxygen tank...

At home Oxygen machine...

Ambu bag and suction catheters...

Extra trachs, collars, masks, saline, nose suckers, etc...

And the power that runs it all... (old house means NO outlets, scary huh?)

But here's why we don't travel.  This is what we bring when we go ANYWHERE:

      

Try fitting more than about 4 of these big ole' diapers in your diaper bag with all the other Mepilex, gauze, feeding tube supplies, PLUS all the regular baby stuff you have to fit.  Needless to say, this bag NEVER zips.

BUT the most precious "supply" of all is our special baby boy...

This was last night during dressing change.  He's been blowing us award winning bubbles lately with this nice cold he has... He thinks it's funny.  This is why Mommy is obsessed with her new nose suckers.

We are all exhausted after this week and now trying to unpack and get settled AGAIN.  I'll update again soon about how little man is doing at home!  Say some prayers that we can stay home for a while.

Thank you much for all the love and support.

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??

We're back!

I'm back with a computer.. and with more pictures.  First I want to update you about our doctor's appointment.

GOOD NEWS: The ENT checked his ears and said he does NOT have an ear infection!

BAD NEWS:  She said he is probably pulling at his ears because his teeth hurt.  She said all babies usually get earaches when they are teething.

SO that means our next task is to go see a pediatric dentist and get his mouth straightened out!  Now THAT is going to be a difficult task.

She also said that he has a viral infection and that is causing all the excess secretions.  So she changed out his trach to a bigger sized one.  She said that might help the noise and help him be able to get the secretions up better.  So far so good.  He sounds a little bit better, but still has a ton of snot from his nose and still making snot bubbles like crazy.  Which is somewhat a good thing because she said he has a "leak" around the trach and that means he can get some air out through his nose and mouth.  And that mean sometimes we will be able to hear him cry a little (when he cries really hard).

So, that is where we stand right now.  If we could get rid of this cold we might be able to one day get back to a normal life!!  That would be awesome.  Here is the little man... I know it's a lot but it's been a while since I've had a computer so I have a lot of pictures!!

Little man... so appropriate.  That is what I always call him.  I love this onesie.

This is him before his bath.  A  HOT  MESS.

And this is after his bath.  Talk about exhausted.

Daddy wanted him to have a "walker" so he can exercise his legs.  So we got him his first car.  He doesn't hate it... but he's not sure about it and his feet barely touch the ground so he can't move around himself yet, but we're working on it.  And he LOVES to ride monkey around on the back.

His jumper-roo.  He's not sure about this one yet either.  But we are gradually getting used to all of these "new" toys.

This was at bath time.  We were trying to take the bandages off of his arms and he locked his fingers together.  There was NO getting them undone, either.  He was boycotting dressing change.

"Mommy's gonna get him..."  I love when i can kiss his bare skin.  We don't get to do that too often (Ahh, the little things).  I think he likes it too.

One more funny story before I end....

Today when we went to the doctor, we were getting on the elevator and this old lady was staring (as people ALWAYS do when we go out) and after staring for about 2 minutes, she says "Did he fall?"

I said, "Excuse me?"

She said it again really quiet, "Did he fall??"

I said, "No, he has a rare skin disease."

She said, "Oh, ok.  Well you know how babies always fall out of their infant seats..."

And I WANTED to say, "Yeah lady, he fell head first out of his infant seat and scraped up BOTH cheeks." Ha.

Next time I'm gonna tell someone who asks, "Yeah, I dropped him."  And see what they say.

No, really... all joking aside, it doesn't bother me at all when people stare.  I am more than willing to let them know what's going on.  It's just when people say silly things like that... that makes me laugh.

I'll write again soon!  Thanks so much for all the prayers and all the support!  It is truly appreciated!!

God Bless!