Wednesday, May 28, 2008

Two more ?'s

that need answers:

**i was wondering what you found helpful or not helpful from the nurses at your hospital. i am hoping to learn how to better support my patients who, like you, suffer the loss of a child.

I loved my nurses and was very happy with the care i received at my hospital. the best thing they did for me was encourage me to hold him (I wasnt sure i wanted to at first)and to take pictures. They told me i could hold him as long as i wanted and they would go get him for me to hold whenever i wanted...i even asked for him in the middle of the night. I felt very odd taking pictures of him at first but i am SO glad, i did. i would be lost without them. and of course i would give anything to hold brenham again so i would just suggest to you to really encourage your patients to do that too.
And just tell them how sorry you are, my nurses cried with us and that really made me feel like they cared and that i wasnt just another patient.
I hope you never have to deal with mothers who have lost their babies again, that must be awful, but i hope this helps. I am sure you are a great nurse, just that you cared enough to ask.


*What water did you land in?
We dipped down in a small murky pond behind Hamilton High School, I never even knew it was there before.

Tuesday, May 27, 2008

Mirror, Mirror on the Wall

who's the fairest of them all?

I should be sound asleep right now, as it is a dialysis day, but i just cant sleep, so i thought i would write down some thoughts.

Being in the beauty industry i focus a lot (maybe too much) on my physical appearance. Lately no matter how much time i spend in front of the mirror i just cant get myself to look the way i want. Tonight as i sat in the bath tub i starred at my body in disgust. I cant remember the last time i felt good about the way i looked. I have this image in my head of the way i should look....pregnant and glowing. But i couldn't be further from that right now.

Those of you who know and see me regularly have probably noticed my recent weight loss...i am aware...and i hate it. The 34-week pregnant katie should be 40 pounds heavier right now but i am not. And i am constantly reminded of that every time i look in the mirror. Will i ever feel good about myself again?

I am not sure why i am sharing this...i guess i just need some prayers, for me to be content with what i can not change..in every area of my life, not just this.

Monday, May 26, 2008

In God We Trust...For Christ We Stand

Happy Memorial Day!
I first and for most want to thank all of our veterans and soldiers who have given their lives and given their time for the freedom of our country. Thank You!
Robb and I have had a very busy weekend, we started it out Friday night with a visit to the cemetery to bring Brenham some flowers from is grandparents and a flag pin-wheel from his mommy and daddy.






Then we headed out to the golf course with friends and I swung a few clubs and occasionally hit a few balls too :)






robbs golf ball landed in this pine tree, just like that, and of course we had to have him hit it out of the tree....play it where it lies!




Then of course, Saturdays excitement consisted of the hot air balloon ride..which again was awesome!!!



Sunday was spent nappin' and relaxin' just like most sundays

Today, robb and i went plant, tree, and shrub shopping to finish off the landscaping around our deck. And to find a tree to plant in memory of brenham, we found the perfect one and planted it next to the rose bush that brenham's uncle jeremy got me for mothers day. i love to have a physical memory of him that we can watch grow and mature year after year.




And then we finished off the day with a cook-out on our deck with 19 of our family members, we all really enjoyed it!
And I hope all of you enjoyed your holiday weekend as well!

Sunday, May 25, 2008

Up, Up, Up and Away


We had a GREAT time up in the hot air balloon ride last night. It was an amazing experience that we will never forget. We enjoyed the quiet serene night, it couldn't have been more perfect. We ended up taking off in a culdesac behind the Burger King on 16th Street and landed behind our high school. We reached about 1150 feet and rode for over an hour!!
A special thanks to Keith, our pilot and again to Eldon and Roxanne for this awesome opportunity. Here are a few more pictures from our trip:




Robb and I waiting as the balloon is being inflated.

We're off!



We could see for miles and miles!


The Lubbers' Establishment

Our Church: Overisel Reformed
here is our reflection in the water

We hit the water for a few seconds and then went back up... a "splash and dash"

We got a little wet!!!


Aww..... how romantic!! :)
The landing
Can't wait to do it again!!!

Thursday, May 22, 2008

I forgot one

I just noticed a new question appeared from the question and answer post a few days ago so and i didnt want it to be left out:

* Do you ever think that this should be more of a personal and intimate thing? Between the Lord you and your husband? Why blog this?

I blog because it is therapeutic for me and also a great way to let family and friends know what is going on without having to go through all of the emotions time and time again. And most importantly a great way to relay my prayer requests.
And by the way, there is tons of personal/intimate stuff that is just between me, robb and God. I keep private what i want private and share what i want to share.

I'm gonna fly

for real, i am! Robb called me last night while i was working (I cut it short matt, dont worry :) and told me he had a surprise for me on Sat. night. I hate knowing about surprises, kinda drives me nuts, so when i got home i forced it out of him....We are flying in a hot air balloon on Saturday night!! AHHH. I am scared, like really scared of heights. But it is an opportunity that i could not pass up, and robb really wants to so were doing it! Thanks Eldon and Roxanne for this great opportunity! eek...I'm freakin' :)

Wednesday, May 21, 2008

Encouragement

Monday night Robb and I along with our parents had the chance to sit down and chat at my favorite coffee shop( shout-out to Java Hut and to you Heidi!) with a young guy who has the same disease I do. He is 1 year post-transplant and doing great.
It was so encouraging to see a smile on his face and hear his story. We were all very encouraged by the things he and his mom had to say. They are both great Christian people and God used them to be a beacon of hope for me. Thanks Jordan and Vonnie (if you are reading this). We are touched beyond words that you would take time out of your night to answer our questions and support us. God bless!

Saturday, May 17, 2008

More Q&A

*Katie, As you go through this tough time in your life, what kinds of things do you find helpful from others around you?And what kind of things do people do or say that don't help you?

This one I have been thinking about for a long time, I want everybody to know that no matter what you have done or said, i do appreciate it no matter what.
But the things I find the most helpful are those who have brought meals when I didnt feel like cooking, sent cards to let me know that even though a few months have passed now, you are still thinking of me. Those who have spoken, left messages or sent emails of encouragement, I love that and need it to get me through everyday. Everybody who has shared in our pain and shared in our tears and most of all, those who have upheld us in prayer.

The stuff that doesnt help so much... I hesitate to write, but one thing that I still struggle with is when people tell me " it happened for a reason" i know this is true, but right now it is hard for me to understand that there would ever be a reason for my baby to die.
Another thing is when people act like nothing has ever happened and I can sense that they are avoiding talking about it to me. Not that i want to talk about it all the time, i dont, but when I bring it up and they change the subject that hurts. I know they just don't want to bring up anything that would cause me pain, but it hurts more when they dont acknowledge the pain I am dealing with inside.


*Katie- what is the one thing you look forward to everyday in life that gets you through the bad days?

ohh, that's a toughie. I guess i just look forward to the normal stuff in life, robb coming home from work, making dinner together, anything "normal" that can get my mind off of everything for awhile. I try to take just one day at a time and not dwell too much on the future, although as you all know i do look forward to the day i get my transplant, get off dialysis and of course, have a family. But since we dont know what even tomorrow brings i try to just focus on today.


*Two questions for you...A while back you posted pictures of you putting the nursery furniture together. Does that help you feel closer to Brenham, and help with the healing process? Also, I am not sure if I missed this, but has your family members been tested to see if they are a match for a kidney for you?
Really, the only reason we set up the furniture is b/c we wanted to make sure everything looked okay and we had all the right pieces instead of finding out a few years from now and not being able to do anything about it. But I do like having it in there, we put all of his stuff in the crib, his blankets and stuffed animals are in there. Sometimes robb and i go in there and stare in his empty crib, so yeah to answer your question it does help us feel closer to him, to picture his sweet little self sleeping in there. It helps.

My family has not done any further testing as of right now, we are waiting to make sure I get approved for a transplant before they take the time to test themselves.

*Katie, when you wake up in the morning what is your first thought. Is there a second of peace before you realize what your life is now?

I wish I had one of those answers that everyones responds to by saying, "you are so brave, and strong, what a positive attitude you have" I wish I could answer and say, "I feel very at peace and look forward to what the day will bring."
But to be honest, mornings are one of the worst parts of my day and my first thought is... "crap, this wasnt a bad, bad dream, this is for real, that all really did happen." Then it takes everything i have to force myself to sit up, put my feet on the floor, get up out of bed and face the day when all i really want to do is pull the covers up over my head and stay there all day.

*Here's a random but fun question (at least I think it's fun)! Where did you meet your husband and what did you do on your first date?
Robb and i first met on a mission trip to Virginia in 2001 with our high school church youth group. But it wasnt until a few weeks after the trip when he first called my house to ask me out, actually he by mistake asked out my younger sister first, he thought it was me on the phone! I was at the mall with my mom (shopping of course) when my sister called me and told me he had called our house. I was in Pottery Barn at the time and had to walk out and sit on a bench, I couldnt believe a senior called me, a 15 year old! ~ yeah that was a big deal.
Anyway later that night he called back and asked me out, I begged my mom to let me go on a date with him but since i was only 15 and not allowed to date yet we had to hang out at my parents house instead. But i still count it as a date. We watched the movie "Save the last Dance" on the floor in my parents basement (since we had just moved into that house, we had no furniture down there yet, and a storm had fried our t.v. upstairs) ~ so embarrassing! Anyway, we really hit it off and hung out occasionally at each others houses until I turned 16 a few months later. On our first official date we went to a local restaurant and to the County Fair Tractor Pull, not what a girl like me had dreamed of as a first "official" date, but i love him anyway!
Oh, funny story...on that first "date" when robb was about to leave he tried to kiss me but since my mom had told me "no kissing on the first date" i ran away, just as he was leaning in!! Poor Robb, denied on the first date!


*where is Brenham's grave?

Brenham is buried in Overisel Cemetery, just a couple miles from where we live. If you are familiar with the area, if you are heading east on the cemetery road, it is down the last driveway, about half way down. I am sure he would love a visit from anyone!

*So, my question... What was your favorite stuffed animal when you were a kid? Did it have a name?
I had a big white teddy bear that I slept with when I was little (and when I was a little older too :) and he probably had about a million names through-out his lifetime, ranging from teddy, fluffy, snuggly..yeah i was creative huh?


*If you weren't a hair stylist- what would you be?
hmm, good question, maybe an OB nurse?

* What is you favourite movie and actor/actress?
My favorite movie? theres lots, I love "13 going on 30", "The Notebook" and "How to lose a guy in 10 days" the most.
My favorite actress is Kate Hudson.
My favorite actor is Matthew Maconaughey...he's yummy! I thought about marrying him but his last name is too hard to spell. :) just kiddin... love ya robb!

Thank you all for your questions, they made me laugh, they made me cry, but I am glad i got the opportunity for all of you to get to know me a little better.

On another, more serious note, I have some discouraging news to share. On thursday after a crappy day already, robb came home from work and told me that my appointment on Wednesday was canceled. The doctor doesnt want me to continue any further with the testing until he can do more research on my case to make sure that my disease wont come back in a new kidney. We did reschedule the appointment in a couple weeks but i am just totally bummed.

Thursday, May 15, 2008

Q & A

Thanks for your questions, I just have a minute (Grey's Anatomy is on) but I thought I would quick answer a couple of the easy ones. I am still pondering the deep ones.

*Katie, What is your favorite color, your favorite flower, your favorite food, and your favorite restaurant?

This is a fun one!
Favorite color would be orange, color of the sun! although i dont wear much of it, i do love it!
Favorite flower would be a toss up between the gerber daisy and a spider mum (eww i hate spiders though)
Favorite food is pasta, but it has to have red sauce not white!!
Favorite restaurant is Olive Garden, even though i havent been there in forever, the wait is always way too long. And i am inpatient when it comes to waiting for food!

*Do you like to read? If so what is your favorite book/author?
Eh, i am usually not much of a reader but i have become one since i have to sit at dialysis for 4 hours, 3 times a week! I do love books by Karen Kingsbury, so good. My favorite book is Chicka Chicka Boom Boom! haha, classic!

*Katie - What is your most embarrassing moment?
That's easy, at my wedding reception just after robb and i were introduced we went to have a seat at the head table and i totally missed the chair and landed flat on my rear. in front of everyone, and yea we have it on video!

*Katie - Here's a few I have always wondered about.

Why can't you get a tan on your palms?

Why isn’t the number 11 pronounced onety one?

How do they get the deer to cross at that yellow road sign?

haha, good ones matt, but just b/c i didnt go to college doesnt mean i dont know the answers to them!!
you cant get the palms of your hands tan b/c when you use sunscreen you use your palms to rub it in and after years and years of build up, there is just no hope of a tan on them. Thats my answer and i am stickin to it, but yahoo tells me it is b/c there is no or very little melanin in the palms. hows that?!?

11 is not pronounced onety one for the same reason 12 is not pronounced onety two!

the deer trainers just try, try, try again. until they catch on. Thats how they do it.

thats all for now! Check back tomorrow, and keep 'em comin'

Wednesday, May 14, 2008

Just an idea

I have been seeing this done on other blogs and thought it might be fun to give it a try:
A question and answer blog.
Basically you leave me a question in the comments section and i will make a post and answer them.
Questions can be about anything: life in general, kidney questions, whatever you got, just remember this is a family-friendly blog, so use good taste. Just a fun idea, we'll see how it goes!
Ask away.

Monday, May 12, 2008

Well that was a disappointment

So apparently the evaluation testing is a 2-3 appointment process. So todays appointment was quiet the disappointment. We met with the nephrologist (kidney specialist) and he was pretty cut and dry. Kind of a downer dude. We learned a lot of things that we have never been told before, all of which were pretty discouraging. One of his main concerns is that the type of kidney disease I have may not be at its worst stage yet. Meaning he may want to hold off on the transplant and continue with dialysis for awhile until he is sure it wont re-appear a few weeks after a potential transplant. I know that probably sounds like a good thing but it was not what I wanted to hear. I just want to get the transplant asap and get on with "normal life". But he is not sure yet if that is the case. He also had some pretty bad side effects to tell us about.
As far as testing today went, all I had was a basic physical and some X-rays done, no blood work to test for antibodies :( What a let down. I had been preparing myself all weekend for this and it didnt even happen.
We set up the next evaluation appointment for next week wednesday at 9:00 am, this will be an all day appointment (until 3 pm-ish) where I will meet with 2 different surgeons and also get more of the testing done.
So I am in a bad mood now, we really heard NOTHING positive today. It was all bad. Please pray that the next one goes better.

Sunday, May 11, 2008

It has arrived....

Mother's Day.
A day I had anticipated for so long while I was pregnant has become a day of sadness for us. What should have been the happiest time on our life, has turned out to be the hardest. As other mom's are receiving handmade, scribbled cards, I have one's in memory of my child. As they sit in church smiling from the recognition of their day, I sit in tears.
I want to thank everyone for their thoughts and prayers you've had for me today, my first mother's day. It's definitely been a struggle for many reasons... without me having to explain all of the many reasons why, I am sure you know.
I have received lots of nice cards (one being from my hubby that was actually a birthday card, not a mothers day card, but hey, he tried :) emails, messages and gifts from many people. Thank you so much for acknowledging me as a mother even though my child isn't here for me to nurture and care for.
A very special gift came from Brenham's Uncle Jeremy. He got me a rose bush and wrote a very touching letter about how he wanted to get me a rose bush because it represented my life.The thorns represent life's struggles and hardships along the way but the flowers represent the good times that follow, like returned heath and more babies :) Isn't that thoughtful? What a sweet uncle Brenham has. :)
And also some friends from church dropped off this adorable bag filled with goodies.
The pocket insert on the front says:
Brenham Jay
Safe In His Hands

How very sweetly you tiptoed into our world
Almost silently, only a moment you stayed.
But what an imprint your footsteps have left upon our heart

*Here is a close up of it, the picture turned out kinda blurry but you get the idea!*

I will never use another purse again, (well maybe, I do have quite the collection :) I LOVE it!!

We also realized today as we visited Brenham's grave site after church that his headstone arrived sometime within this past week. What a precious gift. To know his life, death and Home-going will be acknowledged by all who visit there. He will never be forgotten.
I feel so lucky to have such great family and friends who have been so sensitive and understanding of the difficulty today brings. Thank you all for your support.

Saturday, May 10, 2008

Dialysis 101

Since dialysis is such a big part of my life I thought I would tell y'all a little bit about it.
I go to dialysis on Tuesday, Thursday, and Saturdays. I get there at 7:15 am (thats right, WAY too early for me) and usually get hooked up by 7:30. They use the port in my chest to hook up 2 tubes to the machine.One tube brings my blood out to the machine to get cleansed of the toxins and then the other tube brings the blood back in. They also can monitor how much fluid to take off and give medication through the machine. It's actually a really amazing process and I am grateful for such wonderful technology to keep me alive. Usually I get unhooked from the machine at 11:00 and head right home to sleep. Most of the time dialysis is pretty uneventful and boring. But today I realized boring is good. Today was crazy.
Within the first 5 minutes the machine started beeping indicating low arterial pressure. This happens almost every time but I usually can get a good hour in before it starts. To fix this they have to unhook me and reverse the two lines.
Then I mentioned to the nurse about my site, that I thought it might be infected and sure enough, red and oozy. He did a culture on it and I will know for sure on Tuesday. Just for precaution though, he gave me an I.V. of antibiotics. Within 20 minutes of having the I.V. drip my skin started itching like mad and turned very red. Not fun, it itched soooo bad. So I call over a nurse and she stops the pump and takes my blood pressure, it had dropped to 105/55 that is really low (for me, I usually run around 140/90 and normal is 120/80) so then I get super dizzy and all the fun stuff that goes along with it. So apparently I am allergic to that...nice. I was given some Benadryl for the itching and we went back to the antibiotic I took the previous time I had infection.
Now, I am up from my nap and feeling fine, but it sure made for an interesting day.
So there you have it. A little something about dialysis

Friday, May 9, 2008

Schedule Appointment.....Check!

My evaluation appointment is scheduled for Monday, May 12 at 2:00 pm. Yeah! We were just hoping to have the appointment set up by Monday, but now the appointment is Monday! We are ahead of schedule. I am nervous and excited to get things moving along. Please pray for me this weekend, pray without ceasing. God has answered our prayers for an appointment so soon and we know He is able to do the same for a low antibody percentage too. Our God is good. He will be faithful.
~Katie

Thursday, May 8, 2008

My "Report Card"

I got the results of my monthly labs today at dialysis and things are looking great! My hemoglobin is finally up where is should be at 12.6 which is way up from 5 like it was before my first transfusion. Yeah! And all other numbers are also in the normal range other than my phosphorus level is a touch high. That will be controlled by medication and diet. This may not mean much to all of you, but it is great news to us!
I am a little concerned that my site is infected again, b/c it has been a little warm and tender to the touch today. But the nurse said it looked fine. So who knows. Once again if it would be infected, that is bad news. Bacteria growing on plastic is hard to clear up and the port may have to be removed if antibiotic won't clear it up. Please pray that it is not infected. I am sure that the nurse knows what she is doing but it has been feeling fine up until now so I am just a little worried about it. I hope I am wrong.
The evaluation forms we had to fill out got sent out yesterday and we are still waiting to hear from the transplant coordinator to set up the appointment. She called today and said hopefully by Monday we will have an appointment set up. Yeah! That's all for now!
God Bless
~Katie

Tuesday, May 6, 2008

Back from the Seminar

Robb, both of my parents, Robb's mom and myself just got back from the kidney seminar at Saint Mary's in G.R. The information was pretty much stuff I already knew. But we did get to meet Jill, my transplant coordinator, who was really helpful and totally on board with the speedy process we are hoping for.
We also found out more information through her about the antibodies. She explained that most likely I do have some antibodies that resulted from the 2 blood transfusions and also the pregnancy can form them. But the testing will provide us with a certain percentage of them. The higher that antibody percentage the harder it is to find a donor, but not impossible. :) They have done 2 transplants on people with 100% antibodies. So worse case scenario is I have 100% antibodies and have to wait for a deceased donor with compatible antibodies. That could be YEARS. She guessed I wouldn't be 0% but probably not 100% either. That is quiet the range, but at least now I know a little more about that.
We have some forms to fill out and we will send those out tomorrow and as soon as they receive them they will be calling that day or the next to set up the evaluation. The evaluation will be a series of tests to determine if I would be a candidate or not and most importantly the antibody percentage. Please keep praying that the antibody percentage is low and also that I can get an appointment as soon as possible. I am ready to get this ball rolling.
I will keep you posted!

Sunday, May 4, 2008

Memories to last a lifetime

Brenham~
Me and your daddy were up til 1:30am last night just talking about you. And I have been brewing this letter in my head all night. Even though you were only with us for 21 weeks we have so many memories of you. I remember the day I found out I was pregnant with you, I couldn't believe it! I remember waiting for daddy to come home so I could tell him about you

I remember daddy's face when he heard the news

I remember telling your grandparents and aunts and uncles about you with this video mommy made. (You may want to pause the blog music before playing the video)

I remember the times I got morning sickness, but deep down I loved it, it was proof of your existence when I could hardly believe you were really in there.
And I remember telling all of our friends about you a few weeks later. Everyone was so excited you were coming.
I remember the day we went to the doctor for the first time and we heard your little heartbeat, you were only 10 weeks old and the doctor wasn't sure if we would be able to hear it or not since you were so young, but we did and it was the most amazing sound I will ever hear. This is us the morning before that appointment

I remember dancing with you at Uncle Kyle and Aunt Mindy's wedding

When Christmas came, you got lots of fun presents already, you even had your own stocking! Me and daddy loved to open the presents that were for you more than our own! This is your mommy and daddy at Christmas

I remember the first time I felt you flutter inside me. I remember the game we used to play when I would tap my fingers in my belly and wait for you to kick me back. I loved doing that with you. I remember the day daddy first felt you kick. You were a strong little boy. Did I ever tell you that I wanted you to be a boy? I did. I had this feeling you were going to be a mommy's boy.
You celebrated grandpa's 50th birthday with us, you even gave him a card. Here we are at the hotel where we celebrated

You've been to Florida with us. Daddy and Grandpa R. had to go to Orlando for a truck convention. I remember daddy and I walking all around Sea World looking for something we could buy for your first vacation suvioner. This is us in Florida.

I remember when I finally started to show! I was so excited, it was evidence of your growth. Here I am at 19 weeks, I was much bigger at 21 weeks. It is amazing how much I grew in just a couple weeks. I never took a more recent picture than this

I remember going to see your active little body on the ultrasound screen. We had waited for that day for along time. You looked so cute jumping around in there. We didn't know that you were a boy, we wanted to be surprised but we loved you so much already.

You even went to a Detroit Piston's basketball game with us and our friends Matt and Angie. We think you would have liked basketball, you had such long legs that I am sure you would have been a great player. Here are mommy and daddy at the game.
I remember the day you were born. February 29, 2008. I remember when the nurse brought you in the room and handed you over to daddy to hold. You were so handsome. We looked at you and kissed you over and over again. You were perfect.

I remember your memorial service. Pastor Andre talked about how much God loved you. And how you are safe in heaven now. I remember Daddy carring you out of the chapel and placing you in the ground. We each placed a shovel full of dirt over you and said goodbye for the last time.
Memories are all we have left. These memories will have to last us a lifetime. There are so many memories that we will miss out on. So much we will never know about you. What kinds of foods you would have liked? Your favorite sport? We will never get to hear your first word(I'm sure it would have been "mommy" :) or watch you take your first steps. We'll think of you on your birthdays, on the day you should have started school, and the year you would have graduated. We will wonder what you wanted to be when you grew up and how you would have changed our lives.
We will never forget you. We only held you in our arms for a little while but we will hold you in our hearts forever! You have changed my life! I love you baby.
~Mommy