Monday, September 22, 2014

Open Heart Surgery Date Set

It's been a long week and a half. 

There was all kinds of changes for Josiah turning three and all kinds of "ups" with him. We had, had all "downs" you could say with Savannah.

After talking with the cardiologist and finding out they set Oct. 7th as her surgery date, we discussed her health at that's not great. They have upped her surgery to this Tuesday, Sept. 23.

-She is still struggling with labored breathing. It's gotten worse, the lasik isn't keeping up with it as much.

-Her weight gain has been REALLY slow and has once again plateaued. We tried to increase the calories again but her tummy couldn't handle it and ultimately she couldn't keep it down. So...
                      1. Risk of aspiration.
                      2. Back to square one with calories and no-little weight gain.

-We are heading into "sick season" and she's at a higher risk of getting sick (has to do with having Down Syndrome) and with her heart right now, depending on the illness it can be deadly to her. Last Sunday at church we found out THREE different families had phenomena and another family had the respiratory virus that has just hit New England form out West. All of that would be DEADLY to Savannah!!! If she where to get a cold...they would have to push the surgery out for another 6 weeks!! Her heart is failing....her lungs are failing...she can't take another 6 weeks they tell us.

Spending time with Daddy, telling him a story.

Princess Pudding Pops

     They had us come in this past Monday for her pre-op appointment. That was a lot of work and am SO THANKFUL that Daddy stayed home with the big kids!! We went to the lab for blood work, then for an x-ray (she has to sit while we hold her arms straight up. It's very uncomfortable, but was able to stand there and looks at her and calm her down...Thank you Lord), then an Echo was done. At that point she had, had it...she was poked, stretched, then sticky tabs where pulled off her body...she screamed then finally went to sleep, which was perfect. 

     Next we had another sonogram done of her heart. We used the half hour to talk with the Anesthesiologist about the whole thing. We then had to get more blood work done (so cruel!!), this time they took her from her head...I walked out of the room...I couldn't handle that. By that point she wouldn't stop screaming. I met with the surgeon and discussed the surgery with him, while she screamed. :p Finally they took us up to the ICU to see it, meet the nurses and was given my instructions for the night before surgery. At that point she was giving "hate look" to everyone...I have never seen her give looks like that. lol!

A cutie in Daddy's arms.

In awe of Daddy.

My 5 month daughter is having open heart surgery.

My daughter is having OPEN HEART SURGERY.


I've said it out loud...I've whispered it...I've cried it.

Once again I am handing it over to CHRIST.  Fear and worry does nothing. but drain today of it's joy. 

     God is in control...I am NOT. No matter the out come...not mater what happens...good or bad. God is in control!  HE created her...HE loves her more then we do...HE had entrusted her to us, but ultimately she is HIS child, not ours. There is NOTHING I can I will PRAY...pray for the surgeons and medical team, the hospital, against germs and infections, for strength for her body and heart, for peace and strength for our family, and for grace. Then I will again hand my fear and worry over to HIM...the AUTHOR of LIFE.

DISCLAIMER: I am about to describe a summary of the surgery and what to expect after. 
If you can't handle that type of thing, then don''t read and further. :) 

     The night before (as in tonight) we have to scrub her down with a special soap they gave us and again in the morning. We have to be there for 6 am in Boston. They are going to cut down the soft bone on the rib cage (the bone that connect the ribs in the middle), they will then pull back her ribs and in order to fix her heart they will take a dime size piece of her heart to patch up the hole (he said it's just like patching a hole in clothes), he will literally tie off the artery that is still open. I don't think he is going to touch the smaller hole in her lower chamber and he mentioned that typically there is a hole in the upper chamber that they can't see and if that's the case he will stitch that hole up.
     I don't know how they keep the heart pumping...I kind of tuned out at that point. I know she will have a pic in a main vein and a breathing tube in. He will then wire the rub cage back together. The surgery should take about 6 hours.
     Lord willing, she will spend about a week in the ICU before coming home. They said the first few days there will be ups and downs with her health, until her heart "gets it" and then she should take off health wise. :) When we come home you have to be very careful how you hold her, due to her bones healing. I'm nervous about that. But once she stabilizes she should take off health wise, grow and have way more energy!

For His Glory,

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