10,000 Reasons

Here we are, Day 2 being home. Its been such a transition, and I have to admit an emotional one. Darn those raging hormones. ;) Overall, my tears have been of thankfulness, awe of God's greatness, mercy, love and there have been times of sadness. The enemy wants to instill fear into my heart and I wont allow it. Fear is not of my God. Where would I be without my savior?

I realized that I was so drugged that I didn't update you with where there concerns are with his heart condition. As we know, Bennett has an aortic stenosis. They found a little more information that would reveal he has a bicuspid aortic valve (he has two leaflets instead of three). The cardiologist doesn't feel that this will cause an issue until much later in life where he would need surgery. Their more main concern at the moment is his aortic valve but the only way they can really know anything for sure is with time. We wait to see when his ductus closes to see if that will cause narrowing in the valve. If it does cause narrowing, he would need surgery and would not survive being so small, so they would give him a medicine to make him think he was still in utero, then reopening the ductus and wait until he is big enough to survive a surgery. So at this point they have him under alot of monitoring. He gets his blood pressure checked on both arms and legs 2x a day to make sure there are no changes as the ductus starts to close. So at this point, like much of his journey we wait and see. :)

Today, our sweet bennett is doing good. When we arrived for our visit she mentioned last night he required a little more oxygen then he has since birth, but not alot. They wanted to get to the bottom of why the change, so they ordered an echo to be done to make sure that his valve is not narrowing. They also wanted to rule out infection but she mentioned that he is not showing any signs of infection so they don't feel that is the issue.

The echo was preformed today when we arrived and the tech could not reveal much but said the ductus wasn't closed yet so we have to wait for the cardiologist to let us know if anything else was found during the exam. After the echo the nurse mentioned that he needs a PICC line (an IV) because his umbilical line has an expiration date to avoid infection, she told me they would be putting that in today and I could call at 6:00 to see how it went.

I called back around 6 and they mentioned that after we left today, he needed additional (2L)  oxygen (he had 1L before) but couldn't say why. She also informed me they attempted the PICC but couldn't get it in just right (in his scalp) so they would be trying it again later tonight possibly if not tomorrow. She was working on getting him calm because he had a pretty eventful day and was just tired. The nurse also mentioned that he needed a diuretic because he had more fluids in his body and wasn't releasing it as quickly as they wanted, they said after the diuretic was given that his oxygen became a little better, not back to what it was but still a positive! So at this point we are just praying that his oxygen goes back to 1L, that there be no infections, no complications with his heart after the ductus closes, and he starts to gain weight and continue to stump the medical team! :)

We thank you for your prayers and walking this journey with our sweet Bennett. God is so good. I cant even begin to express to you what comfort I have knowing that when I leave the hospital, God is there. That when I feel alone, God is with me. That when I shed a tear, God is catching it. That in this journey, my God loves me and cares for me. That this journey with our son is for a hope and a future and not for harm....10,000 reasons for my heart to find. These lyrics below describe everything perfectly.

Standing on this mountaintop
Looking just how far we’ve come
Knowing that for every step
You were with us

Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

Every step we are breathing in Your grace
Evermore we’ll be breathing out Your praise
You are faithful, God, You are faithful
You are faithful, God, You are faithful

You are faithful, God, You are faithful
You are faithful, God, You are faithfu