Loving life with Lexi & Ivy Joy

We are Home!!!

The flight was hard on Ivy, and hard on mommy too. The first flight she slept, the second one (long) she ate the first 2 hours and was awake the next 5. She was purple and breathing hard. I stayed calm and by the 7 th hour she was asleep. She slept on and off till we landed in San Francisco. We were loved on by 3 sisters, mom and niece and Ivy did amazing with them considering all she'd been through. The Az reunion was amazing, my little Lexi jumping up and down when she saw me then running to me ( until the fun sucker security guard woman chased her down and put her back behind the yellow line!! Unreal!) My honey, my girls, awe so so lucky!!! Laurie my family loves yours!! Thank you!!!! Sue, you are a gift and your son is absolutely precious!!. Thank you!! Home was like a dream, seeing my family took my breath away! Lexi has no problem sharing me as of yet, she is adorable with Ivy and so happy she's home! Ivy had me pretty scared by bed time and very worried when it was nearly 11am and I had to wake her up. She was so weak, not eating so we headed to her appointment at the hospital at 1.

My concern for Ivy was valid, her oxygen saturation was......

40.

I'm telling you, she is Gods miracle in the works! 40? They admitted Brady when he was 5 and had a 90 oxygen saturation read for 5 days!!!

So Ivy is home with us but she is on oxygen 24/7

Please do not stop praying for her little body! We have put almost 2 pounds on her already but she is SO skinny and so blue! She was holding Lexi's hand tonight and it hit me hard how dark purple her whole hand is now.

When I put her to bed tonight her oxygen was still only 67%. We would love to see it get into the 90's so her little body can get strong for surgery.

Today- ultra sound

She has everything China said she has. Small pulmonary artery. Pulmonary Stenosis, transposition of the great Arteries ( her aorta and pulmonary artery are in each others spots) and a big VSD. No surprises. Nothing we weren't expecting. Her lungs appear to be fine but we need a cath to confirm that. Bad lungs means she would be inoperable.

Echo cardiogram- no surprises, good heart beat

The plan-

Chest x-ray Wednesday

Blood work Wednesday

Get her strong! Round the clock oxygen, lots of love, good nutrition, immunize her, and do the surgery for the cath so her team of doctors have a great road map of Ivy's very special anatomy. They will do emergency surgery if they have to, but it's in Ivy's best interest to be have doctors plan out every detail of her surgery based on the current state of her heart. And for her to have been getting healthy amounts of oxygen for as long as possible.

We are so proud of her! She did not like any part of today but on our way home as her oxygen began to rise to the 60's and her face became white again, she was smiling and giggling and shouting mama, baba! She was so happy to still be with us, I know every time we go to a new place she tenses up as if she is not sure we will be staying together or leaving together. I think today a little light went off that no matter what is next, we will be together!