OFF ECMO

Pin It I Will let this photo speak for itself! This is what I walked in to at 5am this morning. Lots of oozing, sorry.

And then the miracles continued. Prayers were spoken and prayers were answered!!!!!

He shielded him and cared for him; he guarded him as the apple of his eye, like and eagle that stirs up its nest and hovers over it's young, that spreads its wings to catch them and carries them on its pinions. Deut. 32:10-11

ECMO is off, Chest is closed, Baby is BEAUTIFUL!!!

Our doctor was proud to tell us that he sewed her up without disturbing the flower in her hair. 

 So much beautiful artwork on the walls from students at Chapel Hill and Highland Park!! We love them all!!!

Don't let anyone look down on you because you are young, but set an example for the beleivers, in speech, in life, in love, in faith and in purity. 1 Tim. 4:12

 The Lord is good, a refuge in times of trouble. He cares for those who trust in him. Nahum 1:7

Tonight as I type this, Ivy is getting a new pic line. The one in her neck clotted. So glad she is still fully sedated. They are attempting to do this in her room, if they can't get it they will need to take her to radiology. Her veins are so tiny. 

I can see her heart beating through her chest. It's an amazing sight I tell you. I think I'm going to get a little video of it, just because. She had some major bleeding from her groin where the line was for her cath last night. But our absolutely amazing favorite nurse ever Miss Jaime got the bleeding to stop and got our girl all cleaned up and beautiful. My sis was here all day (gosh she's the greatest sister!), She has made it very clear that we are VERY lucky to have Miss Jaime!! She really is a doll. 

Our prayers were answered today in such a big big way. Ivy had a BIG day!!!!!  Her lungs are hanging in there, we have some junk in the right one still and she is getting suctioning and recruiting every 4 hours, BUT 60 hours ago she came out of a very major surgery and had been on bypass 13 hours!!! She is only 3 days post op!  Just look at that picture, have you ever seen anything more beautiful and amazing? 

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Waiting at home

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Ivy is home! She was discharged and we are home with a VERY happy, VERY content little sweetie! She remains in critical need of heart surgery, labeled in heart failure, waiting for a Homograft, a donated human pulmonary valve of a toddler. 

Ivy's pulmonary valve is only 1/8th the size of what is should be. Because of her age, her size, her very special heart, the pulmonary valve HAS to be from a human and has to have some tissue from the part of the heart it is attached to still connected to it. So with our needs being so specific, they have not been able to find a match. They have contacted all of the operating rooms and they are hopeful that one will come available in time but right now, without an actual valve being prepared for her, without a valve anywhere in sight, we really didn't have a need to remain in the hospital. We are so very happy to be able to have Ivy at home. She is free of all of those cords and beeping monitors and nurses in and out. The nurses were so very sweet with her and so helpful with everything but the poor gals were so overwhelmed with concern for her as they are not used to running to a beeping monitor showing oxygen saturation at 32 and finding a tiny girl sitting on my lap wolfing down a second cup of chocolate pudding, a pediasure in her hand (empty), kicking her feet and clapping while mommy sings BINGO! She is quite the talk on the 5th floor at PCH. Everyone comes in to listen to her VSD, I guess one this size isn't observed often. 

So what's the plan?  I wish I had better news but the truth is Ivy needs this surgery very soon and we can not do it without this valve. Here I thought it would be complicated enough with just the intense surgery she has been waiting on and now we are faced with the reality that it can't happen yet. We have our girl, we have an amazing team ready to go, we have the help set up and we have no valve. Stinks! But it is just yet another great reminder that we are not in control here and we do not need to be! It will come and surgery will happen and timing will be what it was planned to be all along. We just need to enjoy every day, every minute, because that minimum 2 week hospital stay is going to be.... long! Hard! Draining! And Not Fun At All!

We continue to trust that Ivy is going to be healed soon! We covet your prayers. We delight in every email, every comment, every text and every phone call! We feel your love!

 Swollen eyes and sore leg but such a little trooper. 

 A box of wipes is the best cheap toy. Pull them all out, blow your nose, stuff them all back in, start over!

Blowing kisses to mommy

Always has the energy for a little attitude!

The cath causes a little swelling in the leg. Makes her look like she's finally got a little baby chubs going on there :)

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IVY IS OPERABLE!!!!!

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She is done!!! Her lungs are fine! Praise God!! The only surprise is that along with the pulmonary artery being small and thickened ( called pulmonary stenosis) her pulmonary valve is only 2.9mm so very tiny. Both will need to be re-designed but it is doable!! Her vsd is as thought, HUGE, and the switched arteries (transposition of the great arteries), well, their switched..

Her open heart surgery will include lots of work but Ivy is operable and has HOPE written all over her!!!!!!!!

We are waiting for the surgeon who will be doing the surgery to come and speak with us. Ivy is sedated still and will be for a while due to the need to keep her from bending her legs. Doc told us her leg is big and very blue :( We thank you all for your prayers today and for loving on our family!!! Thanking God for orchestrating this day!

Jesus looked at them and said, "With man this is impossible, but with God all things are possible." ~Matthew 19:26

Love
Mary

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