Totally unexpected

All went EXTREMELY well for Miss Libbi Lou today! We were expecting surgery soon and Dr said today she is doing SO well that it'll probably be another year, maybe next spring!! Yay for Libs :) 'Live each day in the moment' is our motto..
I will post the details later, just wanted to give a quick update :)

MRI and Echo

Bam..reality hit. I like to live in a fantasy world where my kids are all healthy! I also pretend we have lots of money, there are no wordly issues (i don't need food storage, nothing will EVER happen..) my kids are perfect, they never do wrong etc etc. You know what i'm saying? Its easy to live there until a day like today reaches us! It makes me remember that my 'wonderful 2 year old' (we will never call her terrible) and her little body are not perfect. I do fine until the week before an appointment. So most of the time, i do fine. We are lucky to not have WAY more appts and Dr visits. I realize that. But i still struggle. Today is her MRI, we've never had this done before so i'm not sure what to expect. My family kept asking what was going on so i did some reasearch and sent out this in email to them...

Since i myself was unsure of what was going on today, i did some research. I thought you may be interested to read up on whats happening
Thanks :)

What is Cardiac MRI?
Magnetic resonance imaging (MRI) is a noninvasive medical test that helps physicians diagnose and treat medical conditions.
MRI uses a powerful magnetic field, radio frequency pulses and a computer to produce detailed pictures of organs, soft tissues, bone and virtually all other internal body structures. The images can then be examined on a computer monitor, transmitted electronically, printed or copied to a CD. MRI does not use ionizing radiation (x-rays).
Detailed MR images allow physicians to better evaluate various parts of the body and determine the presence of certain diseases that may not be assessed adequately with other imaging methods such as x-ray, ultrasound or computed tomography (also called CT or CAT scanning).


Cardiac MRI imaging is performed to help:

evaluate the anatomy and function of the heart, valves, major vessels, and surrounding structures (such as the surrounding pericardial sac).
diagnose a variety of cardiovascular (heart and/or blood vessel) problems.
detect and evaluate the effects of coronary artery disease.
plan a patient's treatment for cardiovascular problems and monitor a patient's progress over time.

evaluate the anatomy of the heart and blood vessels in children with congenital cardiovascular disease.

Using cardiac MRI, physicians can:

examine the size of the heart chambers and the thickness of the heart wall. (this is a concern)
determine the extent of myocardial (heart muscle) damage caused by a heart attack or progressive heart disease.
detect the buildup of plaque and blockages in blood vessels.
assess a patient's recovery following treatment.

assess the heart anatomy, muscle function, heart valve function and vascular blood flow both before and after surgical repair of congenital cardiovascular disease in children.

Infants and young children usually require sedation to complete an MRI exam without moving. Moderate and conscious sedation can be provided at most facilities. A physician or nurse specializing in the administration of sedation to children will be available during the exam to ensure your child's safety while under the effects of sedation. You will be given special instructions how to prepare your child for the sedation. (Libbi will be under general anethesia for this)

If a child has been sedated or anesthetized for an MRI exam, recovery time ranges from approximately 30 minutes to two hours after the exam is completed

Cardiac MRI allows physicians to examine the structures and function of the heart and major vessels without risks like exposure to radiation typically associated with traditional, more invasive procedures.
So i THINK this is taking place of a cath.. this is a less invasive way to see what Dr needs to see. She may still need a cath if he can't find what he's looking for in this MRI. She will also have an echo following the MRI, shes had many of those before so we're used to that :)
We check in at 930, MRI scheduled for 11, then echo and recovery time. We probably won't meet with the Dr until 1 or 2 i'm guessing.
The hardest part will be when she wakes up and wants her morning 'tippy' Have you ever told Queen Libbi NO? Wish me luck :)
Stay tuned..
Love Libbers

We've had 'scheduling conflicts' so i'm actually not sure if shes getting a echo today or if we are going back later. I never heard back last night. I hope they do both, mainly because i don't want to go back. The main problem was the anethesilogist had to take off after her MRI, meaning she'll have no sedation for her echo. Echo's don't hurt, they just need her to sit very still. I packed a bunch of entertainment and i'm just hoping shes groggy enough still to just lay there. If not, we will go back. They wanted to reschedule to July 13. I requested that we did it this way (with no sedation) instead. I hope i made the right choice. I feel like she's ready to be looked at. Moms instict maybe, or maybe just paraniod mom :) Either way i chose what i did. I hope it was a good choice.
Keep us in your thoughts today!!
Thanks :)

RUNNING

She wears out FAST when running. It breaks my heart. The other day we were swimming and she was having a BLAST, she even went down the slide TWICE! Which resulted in her puking (i think she swallowed water, i don't think it was heart related) but with the swimming, playing, and throwing up it took her a REAL long time to catch her breath.

I had to hold in my tears.

It breaks my heart.

Summer nights

We love summer nights! Its so fun to go out in the backyard and just chill. Libbis favorite 'chill' time is SWINGING! or 'twinging' as she would say :) She has been under the weather so to go out and get some fresh air is NICE! She snuggled up with Minnie and Minnie (hee hee) They are bigger than she is!! Cute girl :)

Moms thoughts for the day

My Aunt Netso took this picture yesterday and it almost made me cry. I looked and saw this sad looking mom, holding her sick baby wondering.. about LOTS! Then i realized it was me :(

I have so much on my mind lately. Libbi has been sick with a high fever (102) for a couple days. She hasn't been eating or sleeping well. She has been really grumpy. I took her yesterday and her sats were anywhere from 76-82. Not sure what to take from that? Do you go with the highest number that pops up? Who knows. I emailed Dr Menon before making an appt with Dr Rose to see if he thought it was necessary to take her in. I did not want to. I wanted to take her swimming instead. I wanted to play with her, and let her play, like a normal healthy 2 year old would do. I didn't want her to be sick. He said to take her in so i did. The conclusion was a possible bladder infection. We won't know until tomorrow on that. This is not all thats on my mind. Her MRI is next week. Her surgery is getting closer, within the year for sure. Probably sooner. I don't want to spend time in the hospital. I don't want to leave my other kids with someone else. I just don't want to do this. But i'm grateful she's here with us. As hard as it is, i'm grateful.

On top of the worry of Libbi i now have a new baby. With a crooked head! I worry about him, that i don't spend enough time loving on him. That he gets ignored.

I worry about Koy and Jerzi. They are at an very impressionable age. Koy will be baptized this fall (if he chooses to) and i hope i have taught him all he needs to know to make that decision. I worry about them at school, playing with friends, how they act towards others. Then there's the business. I worry about Kurt, if he is too stressed, if he will just explode one day with too much on his mind. I worry about the bills, the house being nice, staying healthy and teaching my kids to eat healthy, the yard looking presentable. There is so much to think about and today its overwhelming!

But i'm still grateful.

Thanks for listening :)

BIG GIRL BED!!

We finally made the switch! I figured if she's climbing out of her crib 7 times AND opening her own door, that i may as well keep her safe and just move her to a bed. She was THRILLED with it and even climbed right in and got ready for bed! She is getting so big..sniff sniff :(

Jerzi puts make-up and dress-up on her and she performs for us all the time :)

Libbis biggest fans :) Of course we have to sit in the bed to watch the show!!

High 70s

Lib has been a little funny lately. Always seeming really tired, but refusing to sleep and she seems bothered by her legs alot.. So i took it upon myself to check her sats and she was 75-78. A bit low, but good enough for now i think. June 29 we'll go for her MRI and Echo. I'm feeling that the time is drawing near. And it makes me ill. Pray for us, that we can be strong and do this 1 more time so we can move on with our life and our family. Enjoy each day, stop to smell the roses and NEVER EVER take your family for granted. You never know how long you will have them.