Love

Pin It Love bears up under anything and everything that comes, is ever ready to believe the best of every person, its hopes are fadeless under all circumstances, and it endures everything without weakening. 

I know you have all been patiently waiting for an update and I'm sorry I have left you hanging. It has been a whirlwind around here. 

Oh God! The children of men take refuge and put their trust under the shadow of Your wings. Psalm 36:7

I won't beat around the bush.

We are home.

Ivy weighed in Monday at 1 pound less than the Monday before. I am sick about this. She is skin and bones, a fright to see without clothes, I cry when I bathe her, I have never seen anything like it and it is probably harder for me to handle than her heart right now because it is in my hands. I spend all of my day feeding her. It is all I do, feed, come up with ways to add even more calories to what she is eating, feed, feed some more. If Ivy wants to eat butter right out of the box, she does. (and she does this) There are no restrictions, its all about the calories and wanting to eat. And yet she continues to lose. It's her heart. A common side effect of heart failure is that the kids do not grow and they lose weight or stop gaining. We spoke again about the G Tube. And again, we will get the G Tube going. But for the safety of Ivy in her current condition, the fewer times she is under anesthesia the better. So since there is another cath planned in a month, they will do it then. Wow, I thought I was overwhelmed with feeds before.... now it is waking me from my sleep! She has no more weight to lose. I mean really, you would have to take bone now! She is finally drinking some whole milk! But she tires so fast so her feeds are still 4 bites, rest, start over, 6 bites, rest, start over, 2 bites, and so on. 

On to her heart and the plan.

We started Sildenofil on Monday. She is doing really well with it. We were told it would suck the last of her energy from her and she would be very sleepy. Well that is how she already was. But actually, she is crazy wide awake! The first 24 hours she was a CRANK POT! A very cute, sweet, snuggly, deliciously adorable little Crank Pot! But she started eating better yesterday afternoon and by 6 last night she was trying her hardest to use her strength to be a little more mobile, laughing and squealing and really really happy. 

We will continue this dose of Sildenofil for 2 weeks. After that she will have another Echo and we will double that dose of Sildenofil. This will be her recomended dose.

After a month of using Sildenofil they will do a Heart Cath to see what the preasures are looking like and how the leaking mitral valve and tricuspid valve are doing.

If they feel that the desired change is occurring (pressures down, less mitral valve and tricuspid valve regurgitation (blood backing up in to the heart) then they will continue with the medication cocktail she is on and do nothing for some time. They always try to treat with medication before surgery.

If it does not work, then she will need open heart surgery to repair one valve (the one they decide is the worse) and do a bypass on the Right Coronary Artery. 

If that does not work, then her last resort would be to have a heart transplant. Something that is always a possibility when a child is on the amount of medications that Ivy is on and still not responding to.

Ok, now stop for a second. No sadness! 

Look how happy this Little Luv Bug is today!

Do you know how long it's been since she has just been silly and giggly and a little clown? Well last night we saw that again! And it was like a God Wink! 

We are keeping our chin up because by golly look at her..... How could we not!!

And we are seeking second opinions because we simply would not sleep at night had we not looked in to every possible option for our sweet tiny munchkin!

And I feel like we have waited for a lot of this for a long time. And that waiting with broken parts that can be fixed might not be the most aggressive plan.

And you all know how much we love our cardiologist and team. So this is no reflection on them. If you are from Az and seeking care, you are in excellent hands a PCH. But as a mom of a child that is having trouble and is in the most critical of days,.. after repair, I need to hear what other doctors are doing in a case like this. We are consulting with Boston. If we are going to leave the state we may as well go to the best and in my research, there is no possible way to deny they are the best, rated #1 in the world! And we hope they agree with the plan here in AZ because we really don't want things to get any crazier than they are. This is already hard stuff. I can't even imagine trying to do what we did in March and April in another state across the country. 

But I will do anything for my girl. I traveled across the world to bring her home! 

And I will travel across the country to get her well! 

And will get through it. 

We jut will!

“He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things?” Romans 8:32

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