Hope

Pin It                                      HOPE
                     Is not wishing you could
                        It is knowing HE can!

This morning we all woke up as a family in our little hotel in Palo Alto. Ivy included! She has regained her appetite and was munching on eggs and noodles before 8am while her sister slept. Lexi was so excited when Ivy was unhooked from everything yesterday and they said we could leave. Her smile could have lit the room up! Tomorrow, we start the drive home. But today?

 Today is about miracles! Family! Treasure! Hope! Pin It

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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A little love

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Today, Ivy has decided to rest. She was up for 10 hours straight after being extubated yesterday. Not because she was wired and feeling energetic, but because she did not want to miss a thing. If something else was going to happen to her.. she was not about to sleep through it again! So around 11pm she closed her eyes for the first time all day. But she made sure to wake up every 30 minutes or so. She'd ask her amazing nurse Lesley what she was doing. Why she was doing that. She used her little potty (this girl amazes us how even in her current condition, she uses her potty even in the middle of the night) she drank lots of her beloved water and she was content. This morning she is resting up! She slept until about 1pm, woke up to go potty and is now trying to have some soft food. She really isn't interested in food yet. Such an odd thought for our little muncher! Her last drain on her head was removed this morning. She will get her Arterial line out later today and possibly the NG tube they were using for meds. By tomorrow we should be moving over to the non intensive care cardiac floor. 
We spoke with neurologists in more depth today. Probably because they can see now that she is acting 100% normal. We were told that the extremty of her bleed was very impressive and that the brain was so tight that they could bounce a quarter off of it before releasing the blood. Not good!!! So once again we praise God for getting Ivy through in miraculous ways! Today her right eye is swollen shut, and her right side of face and head are very puffy. Normal, but doesn't look too comfortable. She shines like a super star regardless. She keeps asking me why all the other babies are crying. I tell her because its not much fun here. The nurse tells her because they just aren't Ivy Joy. Whatever the case, I pray for all the friends as she calls them, sharing this pod with us and that all of them are home in their own beds soon! Pin It

He gives us peace

Pin It Its been a pretty quiet day here. 
Quiet is good on a day like today. 
Bryan and I have made it a point to rejoice every single baby step of news that has come our way today as well as the miraculous news we put aside yesterday due to fear that overtook us. We traded our joy for sorrow. Never a good choice, but one that happens quite spontaneously when lives are shaken. So today, we traded our sorrow for joy! And it has been a much better day!
We avoided the operating room today by pumping loads of plasma in our baby girl. And bringing her INR up to a level that would be considered normal for you or I. And then we added the vitamin K. A scary thing for someone with a heart like Ivy's. But we had to focus on what could take her life away from us. Her bleed. It was that bad. And the bleeding was still really significant this morning. And we asked you all to pray as we trusted the one who made her. And we have faith that tomorrow her CT scan will reveal no more active bleeding. 

Our baby steps today are worthy of praise too.
Ivy does wake up when lifted from the drugs and she does act completely appropriate. She continues to have full use of both sides of her body and she answers questions by nodding yes and no. She squeezes my finger so tight and does the fastest head turn you've ever seen when she is looking one way and hears my voice from the other side. She is getting a little fluid overloaded, she's had an awful lot of plasma today. We are also using vitamin K. The doctors from both the heart team and neurology  have agreed that we need to put all focus on her head bleed right now even though we have a high risk of her mitral valve clotting with all this plasma and now vitamin K, (what causes your blood to clot)
We are holding on to hope that just as the Lord has given Ivy's old heart a second chance, He too will keep it strong as we focus on her brain and this bleed. 
She continues to be ventilated and sedated and showing us her will to get through this by fighting her sedation. She is thirsty! And she wants to wake up! Please keep that prayer circle going! 

It has been such a blessing to have my wonderful husband by my side. Being closer to home has us surrounded with family. We are so blessed to have my mom caring for Lexi.  And to have family close enough to visit when Little Ivy is feeling better. So tonight we rejoice in the baby steps. And we humbly thank you all for helping us get through this day with your kind words and fervent prayers for Ivy Joy. Our little Tiger Baby.

                  Time to go hat shopping! 











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