Waiting on results

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We got to get the little Empress out in the wagon today. She had been asking all morning!

We have been given the thumbs up with neurology so now it is just up to her heart doctors to say when we can go. We have 2 more IV's gone as of today. So down to just the one in her right hand. She had lots of awake time today! She is very on edge, Ivy is usually the star patient. most cooperative little patient you can ever imagine! Well today she pitched a hissy fit like we have NEVER seen. She was pounding her tiny fist and shouting at the top of her munchkin lungs, "I NOT GONNA LAY DOWN FOR MY ECHO! I DONT WANT ECHO! I NOT! I NOT DO IT MOMMY!!!!!!" She hates tape. She has had her skin pulled way too many times and she is terrified of getting tape taken off. Well, she had an IV on her groin and another in her foot and that was a lot of tape to come off. She'd had enough and when the echo tech came, she was DONE! It made me feel so relieved to see her fight come out for reasons other than getting through near death experiences. Seeing her use it to protect herself, to own up, to be heard, made me proud. I want her to be herself. I want her to know that she has every right to tell these people she is NOT HAPPY about this! Tonight is going much better. No tests left to do, no tape to pull, just hanging with her daddy tonight while mommy is at the hotel with the other 2. Waiting on pins and needles for the results from todays Echo.

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Cath update

Pin It Our Little Ivy was in the Cath Lab by 7:15 this morning. She was given her happy juice in the holding area at 7am and it nocked her out cold. I suited up and carried her to the cath lab. They let me lay her on the operating table and stay with her until they were ready to begin. She never budged.

I took her beloved blanket straight to the washing machine here in the hospital (something I do every time she has surgery so that it is fresh and clean when she comes out). And the wait began. It is now almost after 11am and the wait continues. They have called me twice. Once to tell me the dreaded news that her right coronary artery is in bad shape and that they see some very severe narrowing/occlusion in one area. They were thinking it was possible that there was a surgical clip left behind but could not tell on film. They contacted the specialty coronary team here and they were headed here to give their expert advice on how to proceed. About 15 minutes later they called again to say that there was indeed a positive read when they did the stress test on her (meaning the narrowed area narrowed even further under stress) so they decided to try and balloon that area of the right coronary artery. She has had some pretty scary times in the cath lab when they have tried to help that right coronary in the past. Praying oh so hard that today will not be a day like the others. Oh Lord please continue to protect my baby girl. You made her strong, please let her use her fierce strength once again today!
I do not have any other results as to her heart function, her PH or anything else as of now. The doctor will come out to speak with me when they are finished and then we will make this our home until our little Empress is strong enough to get out of here. This morning when we arrived and she saw the holding area she looked at me with her pouted lip and said, 
am I gonna be scared? 
I told her no one would be scary and nothing would hurt. She would be asleep. 
She said will they hurt me when I asleep? 
Oh my heart!! She immediately read my emotion and she hugged me so tight and said 
don't worry mommy, the doctors will make my heart better in no time at all. And that was it! Flood of tears! She is so special!!!! An absolute HERO! Any way... The next thing she said was quick, run, lets get out of here!! Hurry mommy, run! She is such a little character!
And her last words to me before she fell asleep in my arms with the happy juice that nocked her out
 ....brace yourself now.... it's a tear jerker (NOT)
Where's my cheetos!!! I want my cheetos!
Oh well, I know she loves me to the moon and back :) And oh how we love her!!!!!
I will be back tomorrow to share. Today we are going to snuggle and heal and do whatever it takes to GET OUT OF HERE! Cheetos first though! Love you all.
Thank you for being our prayer warriors and friends! 


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Wrapping up the week

Pin It Is it really Friday? Seems like the week just all piled in to one long day. My mom leaves tomorrow and I feel like she just got here yesterday. I was so sad that Ivy got sick right before she came, I was looking forward to her finally getting to see Ivy eating and talking and charming everyone around her. Every time she has been with her she has been very weak and sick. Well, as always, God knew my mom needed to be here this week. She has been such a huge support as we weed through our next steps with little miss miracle and she has taken supreme care of our family so that this mama could spend the week doing nothing but love on her babies!!! What a huge blessing she is. Mom, I love you with all of my heart and I would not be the mom I am today if not for you!

As of this morning Ivy was still not doing great however by this evening she was smiling and talking and eating a little more and certainly feeling a whole lot more like herself. Over this past week she has spent most of her time sleeping the day away. I kept her with us where ever we were so she could hear us and feels us. So very grateful that she is showing signs of getting over her cold, little by little. Her cough is terrible and the sad faces she makes due to the pain it causes is enough to leave us both crying.

 She sleeps and she sleeps! It has been very scary at times!

 A very sweet friend of ours sent over these prayer buckets for the girls/family. Such a precious little gift!

 Our (big) little girl has been so helpful with everything Ivy. But the girls are especially cute at bed time. Always making sure the other is nearby. Stories are always on Lexi's bed, followed by tickles, prayers and lights out. Lexi makes sure Ivy gets the same amount of everything even if Ivy would rather go to sleep :)
She is already asleep in her bed when I took these pictures. Sweet baby loves her sleep :(

 Longing for the day that her life does not revolve around medications and Echo's and Cardiology visit. I think the longest she has ever gone between Echo's is 3 weeks. That seems crazy to me. I am certain it seems even crazier to Ivy!

 Miss Lexi started school this week! What a blessing for her to have a 3 hour break from all of the nursing going on at the home. Time to be with friends, spread her own wings and not worry about her baby sis or helping mommy.

 Ivy has facial swelling again. Her limbs are still normal. 

Swollen or not, I think she looks like a little angel.

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