Happy Halloween

So we are home everyone & doing fine will update everyone in a couple weeks...

There's NO Place Like HOME

YAY!! So far so good!! Just have to wait another week for the labs to come back, more blood work, numerous doctors appointments, antibiotics 4 times a day for a week, & sonogram followed by visit to the urologist in a month.
We are finally going home!!
Thank goodness!!

Wishing upon a star

Its Wednesday October 29, 2008
Kaylie is now diagnosed with a urinary tract infection & on antibiotics to fix it. Also we've found that her left kidney is abnormally large & we have to have a Voiding Cystourethrogram done on her today at 2pm. Not excited at all!! She also has a new Milk Allergen so she has to eat a different type of formula that she doesn't like at all.
Our hope is that they don't find anything during the procedure and we will get to go home today with a bunch of new medicines & checkups scheduled. We still don't know whats causing the blood in her stool, besides the result of the milk allergen.
Here's lyrics to a song that Chris & I love and it just seems to fit.
Life Ain't Always Beautiful By Gary Allan

Life aint always beautiful
Sometimes it's just plain hard
Life can knock you down, it can break your heart

Life aint always beautiful
You think you're on your way
And it's just a dead end road at the end of the day

But the struggles make you stronger
And the changes make you wise
And happiness has its own way of takin it's sweet time

CHORUS
No, life aint always beautiful
Tears will fall sometimes
Life aint always beautiful
But it's a beautiful ride

Life aint always beautiful
Some days I miss your smile
I get tired of walkin all these lonely miles

And I wish for just one minute
I could see your pretty face
Guess I can dream, but life don’t work that way

But the struggles make me stronger
And the changes make me wise
And happiness has its own way of takin it's sweet time

No, life aint always beautiful
But i know i'll be fine

Hey, life aint always beautiful
But it's a beautiful ride

What a beautiful ride


FOREVER YOUNG by Bob Dylan

May God bless and keep you always
May your wishes all come true
May you always do for others
And let others do for you
May you build a ladder to the stars
And climb on every rung
May you stay forever young
Forever young, forever young
May you stay forever young.

May you grow up to be righteous
May you grow up to be true
May you always know the truth
And see the lights surrounding you
May you always be courageous
Stand upright and be strong
May you stay forever young
Forever young, forever young
May you stay forever young.

May your hands always be busy
May your feet always be swift
May you have a strong foundation
When the winds of changes shift
May your heart always be joyful
And may your song always be sung
May you stay forever young
Forever young, forever young
May you stay forever young.

10/28 Kaylie's 1 Month BIRTHDAY

It's Kaylie Ann's 1 month Birthday today. We are still in the hospital. Her hemoglobin level is now a 10 so she did respond very well once again to the blood transfusion. Unfortunately the Doctors sent blood samples away to Mayo which will still take another full week to hear/find any results as to what keeps causing her blood cells to break down & split so rapidly. I wish we had some answers to this madness.

So today they were evaluating her & doing more tests & found out that she does have a urinary tract infection. She also ripped out her IV again so will now have to be reinserted again and hooked up to 2 types of antibiotics. She had a sonogram done of her bladder, intestines, & kidneys at 4:00pm today. We should know the results of the sonogram later this evening hopefully.

Doctor Kim says if she stops vomitting & can keep her formula down for the next 24 hours & no more bloody stools then we should be able to go home again later tomorrow evening.

This is no way to spend over 15days of the first month of your life....in the stinking hospital. We're exhausted and so behind on things/bills these days. I don't know how everything will pan out. We just continue asking for your prayers & support during this time.

Emergency Room 10/26/2008 9:00pm

So it's Sunday and we had a great day at church fellowshipping & worshipping with our church family again. God truly does answer prayer. Things were looking up & Kaylie just seemed to be getting better with each doctor visit, each passing day. We had been monitoring her very closely for any unusual symptoms due to any cause of a hemoglobin drop or any other health concerns from Doctor Kim. Unfortunately the third blood test for Osmolitic Frigility in her red blood cells has not come back yet.
Kaylie started acting unusual on Friday & has barely been able to keep any of her food down. She's not sleeping right & definitely not acting like her normal sweet content self. We took her into the afterhours ped clinic, yet they examined her and determined we needed to go to the Emergency Room.
So after they examined her in the ER & took more blood samples we discovered that her hemoglobin level is dropping rapidly again & now at 7.5. This means she does have to have yet another blood transfusion. We are in the PIC level of OSF where they're monitoring her overnight & morning & then the Hemotologist doctor will come in with some more hypothetical explanations for her red blood cells splitting rapidly again.
Just continue praying that this mess will all be over very soon!!!

10-21-08 Home Sweet Home

Well we did get discharged and finally sent home yesterday around 4pm. Thank goodness!! So we'll be offline a while but so everyone knows we have to have doctors appointments twice a week for the next month & blood work done on each visit to make sure Kaylie's levels are all remaining stable. Hopefully everything will continue to stay normal & no more blood transfusions or other problems will occur.
Once again thank you to everyone for your prayers & support in our time of need. God truly does answer prayers & I'm so thankful too!!

10-20-08 Monday Long expected Arrival...the results & DISCHARGE

Well today we found out that 2 out of 3 of her blood tests came back normal & 1 test is still pending. Unfortunately the Doctors & hemotologist still don't know what was the cause of her downward spiral & unexpected blood transfusion.
Apparently she's doing much better & her hemoglogin levels are staying up and stable, along with a low bilirubin level which is great news. We may get discharged today and for the next week do several follow-up appointments to make sure everything continues to stay stable & normal.
She's now eating 3 oz every 3 hours and she has a beautiful complexion. Thank goodness no more nasty yellow skin. She's had it rough the past week & we're just thankful we finally get to go home to our nice comfortable warm beds & visit with my husband again.
We'll try to stay in touch & keep this updated...yet we don't have internet at home still so it may be a little bit.
We just recently moved to Seven Oaks apartments in Peoria....new address for our friends & family:
4010 N. Brandywine Dr. Apt 603
Peoria, IL 61614

10-19-08 3 Weeks old & Our 6 Month Ann.

So today is Sunday October 19, 2008: Chris & I's 6 Month Anniversary.....We're still up at the hospital and we really missed going to Church & fellowshipping with everyone. Unfortunately we have to stay another day here at OSF...Maybe even longer. Tomorrow's the big day that we should find out the results of Kaylie's blood tests. Please keep us in your prayers...pray for Kaylie's health & strength. Also please pray for Chris & I...he's having a difficult time dealing with the stress & trying to learn how to cope without his girls at home with him. It's been a difficult week. I've been doing well just worn out & trying to stay positive & supportive for him.
We also would like to extend a huge thank you to all our family & friends & even the churches that have been so diligently praying for us. God truly does hear our prayers & we know that she's going to get better because he's still in control of everything that goes on in this crazy world today. WE love you all very much & greatly appreciate your prayers, love, & support. God Bless!!

10-13-08 Hospital Mayhem

So many of u know i recently had a little baby girl 9/28/08 at 2:04pm named Kaylie Ann Fuller. . .she was early n not due till 10/19/08. . .so she was a 5 lb 10 1/2 oz preemie. We were discharged from OSF St Francis on Wednesday 10/01 n kaylie weighed 5 lb 4 oz n its normal to lose some weight the first few days but she started turning yellow n havin to be monitored every day 4 high levels of bilirubin/jaundice that poison the brain n central nervous system if 2 high. Her levels decreased after a week so we didnt worry abt her health anymore. Yet monday we had a doctors apptmt n she had gone from a normal 7 to a high 26.7 so we were rushed to OSF pediatrics ward for phototherapy that usually gets rid of the bili in infants kaylies age. Wrong. The doctors cant get the levels to stabilize yet but they did rule out liver disease.
So today friday 10/17 6pm she had a blood transfusion due to abnormally low hemoglobin levels n her red blood cells r splittin for waste sooner than her body can replenish them. It's a bandaid job till we can find the real issue & get it solved. It helps her stabilize & prevent her blood pressure & temperature from rising/increasing.
Well its 5:30am eleven hours after the transfusion n still no side effects or bad reaction which is great. But it's just a temp bandaid to help her till they can discover whats causing her to have such short blood cell life n anemia. Thank god for doctors n technology these days. I've been in this hospital way too long. . .we just want to go hme n be with daddy. Please continue praying 4 us n the doctors that they can swiftly n effectively find a cure n pray that the damage isn't already done.