Surgery for our little peanut, here we go again.

Pin It I am cutting right to the chase on this post. My sweet Ivy Joy is not feeling well. 

She is puffy again as you can see in the pictures I just snapped. She was so sweet to wait patiently for me to snap these when all she really wanted was to fall asleep in my arms. 

She feels lousy!
The last 5 days Ivy has been experiencing some severe ~bloating~??, in her belly. I don't know what else to call it, or at least I didn't know. But it had me very concerned as her tummy continued to grow bigger and harder and her little belly button even popped out. The swelling began to come back in her legs and feet and face. Not near to the extent that we had in the past, but enough to have me making phone calls.

On Wednesday evening we headed to Phoenix Children's Urgent care. I wanted someone to look at her and tell me her belly was normal. I searched the Internet for hours trying to find something, anything like this and there was NOTHING! Well.... the doctors had not seen anything like it either. Not related to the heart, not on a baby that was otherwise looking so pink and happy and down right adorable... just sayin~
So they called my cardiologist, took some x-rays, tried to draw some blood from each hand, then her foot, then mommy put her foot down and said stop! Ivy's blood just would not flow! 
The x-ray showed a whole lot of fluid, a low liver, and left a lot to be questioned. So we headed home for the night and we spent the next day at the hospital. Ivy was 4 pounds heavier than her last appointment. And it was all fluid! Or mostly fluid anyway. Her belly was as large as the day before, her feet fluffy as can be. We had increased her lasix to 3 times per day but they knew something else was wrong. The concern was that she was having kidney failure. Our cardiologist was very very worried about that. After her echo and her blood work, drawn through ONE poke from the neck by our little angel nurse J.S who we absolutely love, we waited. And when the results came back our doctor was both relieved and sad. Ivy's kidneys are fine! Praise God!!!!!! But we are so very sad to say that she has left heart failure and needs surgery.... next week. 

Ivy's tricuspid valve is leaking so heavy that the blood is pouring out and falling in to her stomach and legs. She is weak, not walking, not able to do much of anything at all because she is in heart failure again. My sweet baby is amazing. The fact that she is eating (a lot), drinking, playing while laying down or sitting up, talking and engaging..... all amazing!! The 13 year old and 18 year old I spoke to at the mended little hearts meeting told me that when they had valve leakage before a valve replacement they could not get out of bed. The moms who's kids went through valve issues when they were younger said they had feeding tubes until they were 5 because they did not have the energy to eat! Yes, she is amazing, yes she has been through a whole lot and yes she will get through this too. We all will. She is such a special, amazing little girl. She is a mystery to the doctors. The way she looks so good, and then you see her lab results, and there is no way to deny that there is a God, and he loves this child and he keeps his promises and he carries her through everything!! Because while some may see her story, in an orphanage until almost 2 years old and all alone for so long, so sick without anyone. But we know, she was never alone, God has carried her, He has loved her, He has protected her, He has surrounded her with the right compassionate hearts and now the right family and the right brothers and sisters standing in the gaps, storming the gates of the heavens with prayer and petition for her!!!! He knew then and He knows now and He knows all!!! I find great peace in that!

So we were able to come home. The nurses were surprised to see her coming home... she is sick. But our sweet. awesome, oh so loved doctor knows Ivy. He knows she does better at home. He knows we wouldn't take an ounce of chance with her health or her life and we would be at that hospital in the blink of an eye if we felt there were any changes with her. So that's where we are.
I should hear from the hospital by tonight about the day and time Ivy will have surgery. They are thinking Tuesday but hoping for Monday. It is all about finding an opening in the O.R. 
We trust God, He knows the day and time and He knew this was coming all along. We have only been home 7 weeks but it has been 7 weeks of bonding and loving and healing. 
Now she is ready for whatever is next. They need to get a look at her lungs before they know exactly what they will be doing to her. 
He pressures are so so high. 
We need to make sure her lungs aren't too damaged from all of the time she waited un-repaired. 
Will you please join me in prayer that this is not the case? 

Thank you! Pin It