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That was the first thing that came to my mind when we were asked if we'd like to move AaronMatthew's scheduled open-heart surgery date up.
I am not saying he could have died if we did or do it sooner, although that is a real possibility with all of the risks involved. But there is a peace we have about sticking to the plan.
AaronMatthew came back home for another 2 days and had to go back into the hospital because of a fever that was 102. He was admitted directly back into the NICU. He had some more respiratory distress last Saturday and was transferred to another room to keep a closer eye on him. The doctors were talking about putting him in room 404. To be honest with you, I freaked out a little bit because I know most babies in 404 are on respirators. He also could not keep a stable body temperature and was beginning to be hypothermic.
The doctors took all of his feeds away from him and had him on nothing by mouth. All of his cultures and blood draws came back negative for bacterial infections and virus's. Again, we could not figure out the cause.
It was proposed to us that we could do the open-heart surgery to fix his complete AV canal defect as soon as he got better. My husband and I didn't agree with that decision. We wanted to go with the original plan since the last hospitalization.
Here is the original plan:
- We scheduled the open-heart surgery for November 26th. Take him home. Hope he continues to gain weight and get bigger. (We were told that Down's babies generally do better with these types of open-heart surgery if they are greater than 2 1/2 months old and weigh over 9 lbs. We were also told that the valve that they need to repair is usually bigger and there is a slimmer chance for another open-heart surgery in the future. [A Resident doctor did research on our son's behalf]) And if for any reason we need to come back, they would keep him until his surgery.
We were proposed on Saturday to go with the open-heart surgery for this past Monday with a Cardiovascular Surgeon that we haven't met.
Um... No thank you. Nothing against that surgeon, we just didn't know him. And it's not an emergency. We told them we wanted to stick with the plan.
When I went up to see my son, the Cardiovascular Surgeon that we are going with was up there too looking at AaronMatthew. He proposed to do the surgery earlier, like tomorrow. I told him that I wasn't comfortable doing that. I wanted to stick with the plan and I said, "I am not even mentally prepared to do it sooner." Of course I want what's best for my baby whether I am mentally prepared or not. He said the longer AaronMatthew stays in the hospital the more he's exposed to germs and virus's. I get that. I do. I just couldn't shake, "stick to the plan." I was almost in tears thinking of the very real possibility that God could take our baby. He said there was no pressure and they would touch base with us this morning.
I talked to my husband and told him all that the surgeon said. My husband said, "No. We're sticking to the plan." I was going back-and-forth with him on the phone about all of the "what if's" and got frustrated at the idea of doing it sooner and not sticking to the plan. I know that frustration is not from the Lord. We didn't have any "peace" about doing the surgery sooner.
A new Cardiologist is on rotation and they have been trying to get the surgery sooner. I went back to the hospital and talked to the Cardiologist and told them my concerns about sticking to the plan. Basically an ultimatum was given that either we get the surgery done when they want it done (which is sooner) or we go home and come back when we originally scheduled it.
That brings me to today...
My son's nurse called me and said that they can do the surgery either tomorrow, Monday or the 26th. She said talk it over with your husband and call me back to let us know. I said we are pretty firm with sticking to the plan.
I talked to my husband and he said again, "We're sticking to the plan."
I told the nurse, I understand the whole germs and virus thing. I told her that my other son Tres has a cold, which he does and if AaronMatthew comes home, he will go back because he will get my son's cold. I said, "Why don't we just stick with the plan?" Why can they not keep him until the 26th? I told her that I also believe he needed more time to recoup and recover from that last bout of respiratory distress last Saturday. I mean, he's still not on full feeds. They have started increasing his feeds by 5cc's yesterday.
I know that God created my baby and God know's what is best for my baby and all I want is what is best for my baby. Unless God absolutely says do it tomorrow or AaronMatthew has some sort of emergency and needs to have it earlier, we are not budging.
We are sticking to the plan.
UPDATE:
We stuck to the plan, thank God! because if we would have scheduled it for when they wanted to do it on Monday, he ended up sick and with a fever early Tuesday morning. The NICU nurse couldn't believe a "mother's intuition!" She was amazed and marveled and said she believes we averted a certain hardship if we would have had the surgery earlier.
Be still, and know that I am God:
I will be exalted among the heathen,
I will be exalted in the earth.
The LORD of hosts is with us;
the God of Jacob is our refuge. Selah.
Psalm 46:10-11
Trust in the LORD with all your heart,
lean not on your own understanding.
In all your ways acknowledge Him,
and He will direct your path.
Proverbs 3:5-6
Be anxious for nothing,
but in everything by prayer and supplication,
with thanksgiving,
let your requests be made known to God
and the peace of God,
which surpasses all understanding,
will guard your hearts and minds through Christ Jesus.
Philippians 4:6-7
From Streams in the Desert Devotional November 20
How To Wait
Blessed is the one who waits and attains to the 1,335 days.—Dan 12:12 NET
It may seem an easy thing to wait, but it is one of the postures which a Christian soldier learns not without years of teaching. Marching and quick-marching are much easier to God’s warriors than standing still.
There are hours of perplexity when the most willing spirit, anxiously desirous to serve the Lord, knows not what part to take. Then what shall it do? Vex itself by despair? Fly back in cowardice, turn to the right hand in fear, or rush forward in presumption?
No, but simply wait. Wait in prayer, however. Call upon God and spread the case before Him; tell Him your difficulty, and plead His promise of aid.
Wait in faith. Express your unstaggering confidence in Him. Believe that if He keep you tarrying even till midnight, yet He will come at the right time; the vision shall come, and shall not tarry.
Wait in quiet patience. Never murmur against the second cause, as the children of Israel did against Moses. Accept the case as it is, and put it as it stands, simply and with your whole heart, without any self-will, into the hand of your covenant God, saying, “Now, Lord, not my will, but Thine be done. I know not what to do; I am brought to extremities; but I will wait until Thou shalt cleave the floods, or drive back my foes. I will wait, if Thou keep me many a day, for my heart is fixed upon Thee alone, O God, and my spirit waiteth for Thee in full conviction that Thou wilt yet be my joy and my salvation, my refuge and my strong tower.” —Morning by Morning
Wait patiently wait,
God never is late;
Thy budding plans are in Thy Father’s holding,
And only wait His grand divine unfolding.
Then wait, wait,
Patiently wait.
Trust, hopefully trust,
That God will adjust
Thy tangled life; and from its dark concealings,
Will bring His will, in all its bright revealings.
Then trust, trust,
Hopefully trust.
Rest, peacefully rest
On thy Saviour’s breast;
Breathe in His ear thy sacred high ambition,
And He will bring it forth in blest fruition.
Then rest, rest,
Peacefully rest! —Mercy A. Gladwin
