Pneumonia

My baby girl has pneumonia..

Can't ya tell??

I couldn't.. I took her to the doctor because she was sleeping 18-20 hours a day.. But when she was awake it was all smiles and playing.. That's just how my baby rolls.. Nothing gets her down! Well, almost nothing.. Surgeries and c-diff are about the only things that really affect Olivia.. Now if it was me with pneumonia that would be a completely different story. I think I need to take lessons from my little girl. Have I ever mentioned how amazing she is??

On a different note, I finally got in contact with a woman who has been an amazing source of support and guidance throughout my journey into mothering a VACTERL baby.. She didn't know until now (while hopefully she reads this) how much of a rock she has been for me. The day that the doctors threw the acronym VACTERL at me, I hit the books.. Actually, the Internet because in this day and age that's just where we go to for information. Anyway.. While I was looking it up, I stumbled upon her blog for her amazing son, Brody. Brody is very similar to Olivia.. What really drew me to him was the fact that he has not one but two radial club hands. And I was worried about my child who only has one!! He has shown me (along with Olivia, who continues to amaze me) that I have absolutely NOTHING to worry about in that department. They are amazing!!

And so I have decided that I am all for arranged marriages.. Olivia will one day marry this amazing little boy. No one else will do.. She can't marry anyone any less amazing than Brody and I feel it would be impossible to find any other guy more amazing than him.. It would be perfect.. I want Olivia to always know that she is NOT alone. There are other people in this world that are in the same boat that she is in. She is not the only person that will have four digits on each hand. She is not the only person that feels like a celebrity every time she goes to the hospital because the staff are so familiar with her.. I just think that Brody and Olivia would be the perfect pair!!

I am not entirely serious.. I just like to entertain the idea.. The main thing is that I want Olivia to have a friend who has the same struggles and triumphs as her.. Someone who really understands because they have "been there done that".. Is that too much to ask? Probably a little more reasonable than setting her up for marriage..

Date Night!

Mike and I had the rare opportunity to go on a date the other night. Since having Olivia, we don't get to do things together very often because its hard to leave Olivia with a babysitter.. Not because we are lacking in willing babysitters but because I am a little anal about who I let watch her and for how long and all that sort of thing.. She is on medications and she has to have a certain formula that has to be mixed just right so she gets extra calories.. And then there is the colostomy bag.. A colostomy bag is a lot harder to change than a diaper.. I don't even let the nurses change her bag when she is hospitalized.. I am just that way.. Only I do her bag changes.. Anyway.. We went to see the movie Shutter Island. I read the book so I was really looking forward to seeing the movie. The movie was not as good as the book.. It was way too long! But we did have a pretty good night. Well, up until this conversation..

Mike: So I was watching the news the other night at work and there was this doctor on there talking about some new kind of breast implants..

Me: That's cool.. What's different about them?

Mike: They take fat from your stomach and put it into your boobs.. It is supposed to be a more natural kind of implant or something.

Me: Weird.. Will you get me that for my birthday?

Mike: No. I think you are perfect just the way you are... I wouldn't change a thing..

That would have been the perfect ending to a perfect date.. But no.. He had to add this..

Mike: Do you think our insurance will cover it?

This is Mike and I at Olivia's baby shower.. We look so young!

(And yes, I did make him go.. I didn't want to be alone in the spot light..)

Adventures In the Urgent Care Waiting Room...

Having a medically complex baby, I sometimes feel like we LIVE in the the hospital, clinics, ER.. whatever.. You get the drift.. Tonight we took Olivia in because we didn't think her antibiotics were helping her bladder infection.. There were some interesting characters there tonight.

Interesting character #1: A 19 year old mother of a four month old. She talked and she talked and she talked.. At one point she and some complete stranger discussed their breast feeding woes while a group of about three men and three women were forced to listen in..

Interesting character #2: A guy who hurt his arm pretty badly.. He didn't say much.. He didn't have to.. You could see the bewilderment on his face..

Interesting character #3: The friend of character #2.. Obviously messed up on some sort of drug. I was uncomfortable even looking at him.. He was quite paranoid and couldn't handle sitting in the waiting room.

Interesting character #4: The most interesting one of all.. And the whole reason for this post actually.. She was a late 30's early 40 something year old woman.. She came in carring a crap load of medications.. She claimed to have an impacted tooth, but in actuality was a drug seeker. She said she just moved here from Rockford where she was homeless with her three year old son who was just taken away from her.

The whole two hours we sat in the waiting room, we had to listen as she called her ex or current boyfriend every 15 minutes.. He never answered and we had the pleasure of listening in on her nasty messages accusing him of everything and anything you could think of..

It was a long two hours.. It was an interesting two hours.. And I am so glad to be out of there.. It really takes all kinds, huh?

Wordful Wednesday

I'm not really sure who started this, but I am going to participate! Olivia has started walking!! At 15 months.. Which to us is nothing short of a miracle.. We were not sure what to expect. The doctors didn't know whether she was going to be able to hold any weight through her legs.. And now she WALKS!! And falls down and gets back up and walks again.. Judging by her face, I think she is just as proud as her daddy and I are!!

My big girl!! Time really flies when you become a parent.. I just don't know if I am ready to let my baby grow up!! I miss the baby days already.. And she is just barely a toddler.. Anyway, WAY TO GO, MISS OLIVIA ROSE!!!

Writer's Workshop!

CAUTION: This post contains a picture that may be disturbing to some viewers..

I am again attempting to do another Writer's Workshop by Mama Kat. These things are so fun..

I chose to do a list of dos and don'ts.. About doing colostomy bag changes. Most of you won't find this very entertaining seeing as most people don't get the.. wonderful.. experience of changing an ostomy bag. But JUST in case you ever are in that position, here is what you should and shouldn't do!

DO keep plenty of wipes within grabbing distance.

DON'T stick your face anywhere near the stoma because one muscle flex could turn that thing into a geyser.

DO get organized before attempting to start.. Especially if the person's bag you are about to change is a one year old.

DON'T breath through your nose. The smell will stick with you for a lot longer..

DO keep a bottle of the nifty M9 stuff they usually have at clinics and hospitals.. Febreeze or Lysol just masks the smell and makes it way, way worse..

DON'T forget to prep the skin barrier before you start because the warmer the wafer is the better it molds to the skin.

DO put that bag on over the wafer as soon as that thing is sticking to the skin.. The more poop that actually gets in the bag, the better!

DON'T let any hands get into the paste or the poop while you are changing the bag.. A lot of times those hands find.. MOUTHS.. after finding the paste.. And the poop..

DO find things to occupy said hands until every poopy surface is cleaned/covered..

DON'T forget to thuroughly wash your hands, face, arms, hair, clothes, carpet.. well, you get the hint... After the bag change is complete..

DO give said one year old lots of love when you are done.. The experience is just as.. overwhelming for her.. As it is for the bag changer..

I Should Be Sleeping...

But I'm not. And I am so tired.. But I thought I would list ten important things about myself because I introduced my daughter.. And I think it might be important that I introduce myself as well. I am a little bit boring. Be warned.

1. I am a 21 year old stay at home mommy.

2. I struggle with depression and anxiety.. I think it stems from the stress of my life.. And having a medically complex child..

3. I do not have a college degree.. Yet.. I will start taking classes to become a nurse when Mike, my husband, finishes his degree in criminal justice.

4. I love books.

5. I believe that I am older than my years.

6. I generally do not relate with people my own age.

7. I have gained almost fifty pounds since my daughter was born. I am sickened by that fact..

8. My favorite show is Weeds. The only reality show I can bring myself to watch is Teen Mom.. Pathetic, I know..

9. I always believed that I would become a teacher one day.. Until I had my daughter and had a crash course in nursing.

10. I am loyal, strong, stubborn, and sensitive.

Not the greatest list.. But the best I could summon up.. I sometimes feel like I don't know myself very well yet.. This list was hard for me to write. I hope that through this blog, (once I start flowing with it a little better) I can get to know myself a little better..Well, I think I am going to try to go to sleep. My child will be awake in 4 short, short hours!

Writer's Workshop

I have just entered into the "blogworld", but I do already love Mama Kat at Mama's Losin' It! Every Tuesday she posts her Writer's Workshop prompts. I decided to start her little tradition. It will give me ideas on what to write about! And it seems fun. So, here we go!
Propmt Five: List 10 things you never knew til you were mom.

1. I never knew how much my own mom loves me until I had Olivia.

2. I didn't know anything about the tight bond that is formed between mother and the child's father.

3. I never knew how much WORRY was involved in being a parent.

4. I never knew how much you would look forward to each one of your child's milestones and wish and wish that they would get there, but once they do start to smile, roll over, crawl, pull themselves up, walk, etc. that you'd just yearn for them to be your baby again.

5. I never understood other parents when they worried so much after dropping their child off with a babysitter.. Especially when that babysitter fails to return phone calls.

6. I didn't know how much darn paperwork is involved in having children! Especially children with medical problems.. Ugh.. Exasperating..

7. I didn't know that becoming a mom would show me that I have a passion to one day be a nurse..

8. I never understood the pride parents feel for their kids until I had my extraordinary child. Now I know why EVERY mom thinks their child is the BEST!

9. I didn't know for sure whether or not I made the right choice by marrying my husband, Mike, until our daughter was actually born. Now, when I see them together or see Mike taking care of Olivia, I know without a doubt that he is the one.

10. Finally, and most importantly, I didn't have a single clue how much one could love another person. I know that this is going to sound super cliche, but Olivia is my heart living outside my body..

If you want to participate in Mama Kat's Writer's Workshop, head over to her site! The link is above!

Introduction

I am not a very creative person. Writing isn't really one of my strongest points. This blog is just an outlet for me to express my thoughts and things that are going on in my life. I have a very hectic life. And because of that, this post is going to be extremely long. Not all of my posts will be this long!

 My daughter was born with VACTERL Association. VACTERL is an acronym and the letters stand for: Vertabrae, Anus, Cardiac, Trachea, Esophagus, Renal (kindey), and Limb. Olivia has many congenital "defects". I HATE that word. I am going to steal another parent's word and call them "perfects". (Unfortunately, I don't know what parent originally said that, otherwise I would give them credit!) Olivia was born with underdeveloped sacral bones, an imperforate anus (meaning that there is no hole on the outside of her body for stool to pass through), a cloacal malformation (where the vagina, urethra, and anus are fused together and there is only one hole to the outside of her body), three holes in her heart, two of which closed on their own and the last one is minor and causes no murmur, hyronephrosis (fluid filled kidneys), kidney failure, right radial aplasia (missing the radius on the right), left thumb hypoplasia (floating thumb, there is no joint). Also, something that is associated with VACTERL but not included in the description, she had a cleft palate that was repaired on the 11th of January. Olivia has had a total of four surgeries: when she was a day old they had to make a colostomy, at three days old she had a vesicostomy put in, May 2009 she had her vesicostomy revised because her bladder prolapsed, and finally her cleft palate repair this month. She will also be having another surgery to repair the cloacal malformation, then three months after that surgery (if all goes well) she will have another surgery to take down the colostomy and vesicostomy. After she heals from that, she will have a surgery to straighten her arm. Once healed, she will have yet another surgery to remove her left hypoplastic thumb and have her index fingers moved down into the thumb position.

Olivia, despite of all of her medical problems and hospitalizations and surgeries, is a very happy 15 month old! She was diagnosed failure to thrive so she is very small, weighing 14.5 pounds. She makes up for her size with attitude! I just wanted to introduce all of you potential readers to Olivia so that down the road when I post about her you will have some background knowledge.

I look forward to meeting new people through our blogs.. If you have any questions at all, feel free to ask me anything.