Friday, April 17, 2009

His nearness is our good

The boys were with us on Easter and the folks at the RMH gave them a basket full of gifts
On Easter 2009
Psalm 61:1-3
"Hear my cry, O God, listen to my prayer; from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy."
- The day Shep had his trach put in, we were leaving the PICU waiting room (it was late at night and we were soooooooooo exhausted) when I looked over and saw this passage on a calendar.  I was really struggling with hopelessness and discouragement  and I don't know where that calendar came from, but I am grateful for God's word being thrown in my face when I'm too tired to look for it.

The procedure went great. They called us about midnight to let us know it went well. (It got pushed back b/c of another emergency. welcome to the PICU). They got much more fluid than they anticipated and it looked clear so they don't foresee infection. When we came in this morning, he was looking good, probably will get another blood transfusion, but was awake and comfortable and breathing REALLY well, with some help from the vent. They have started him on low level feeds, and are weaning the vent slowly. His goal over the next couple of days will include eating and weaning off the vent, while fluid still drains through a small tube they inserted into his chest wall last night. It has already drained a lot of fluid , but know it has begun to look as though some of the fluid draining is  from something else. They anticipate that it is from something called "kylo" (sp?). If the surgeon nicked the lymph system during surgery, then it will leak when he is fed. Hopefully it can simply be fixed with changing his diet to a special formula for six weeks while it heals. If not, he will possibly be looking at another procedure. 
Thank you guys for praying for him and for us. We have had some ups and downs but God has brought us some great encouragement in a number of ways.
Some of you have been praying for Reed. To give you a little more info, he was born with some difficulties, but nothing that fit into any typical disorders. He has been home with his parents during the first 6 months of his life, but recently he aspirated and was sent here for some surgical procedures. During one of his procedures last week, they found that he has a rare muscular disorder and so far is presenting as a worst case scenario. The staff has told his family that they should not expect him to live past a year, and he is six months old now. They also have a seven year old that they are trying to parent through this. Please continue to pray for them. We got a chance to speak with them this morning and they are trying really hard to be hopeful. But they are obviously hurting immensely. Pray that God's love and nearness will be greater than their sorrow. And please join me in praying for healing for their precious, precious child.
As I struggle to be hopeful, it was great to hear them say how helpful it has been to have us here. It brings me encouragement to know in the present, some of the ways that God is using this trial and Shepherds life. I know there are many things God is doing that I may never see, but how kind it is of God to show us fruit from our sons life as we walk each day through difficulty.
I could make a very long list of the ways God has shown his nearness (and I think I may begin to do that at the end of each day, as a way to protect my heart from despair). Just taking yesterday, there were a number of things that God did. I was REALLY struggling yesterday morning. The first thing we encountered upon arrival at the hospital was a nurse who had a gift for us. She has only been Shep's nurse one time through our whole stay. A friend of hers made a beautiful quilt and told her to give it to someone in the unit she thought should have it. By God's prompting of course (though she may not know it), she thought of Shepherd.  It was very precious. 
It wasn't too soon after that the room flooded, right in the middle of Shepherds very scary breathing episode. God was gracious enough to have us at lunch during the flood ordeal (with someone from our church to encourage us). No extra drama, please. Thank you.
Driving back up to the hospital after lunch we were behind a van whose window decal (that took up the entire back window) said "The Lord is my Shepherd." That's a first. How timely. 

And then there are the many times in a day that the body of Christ (including both of Noah and I's family) encourage us in a NUMBER of ways. I think I will do a separate post just about that, cause there is WAYY tooooo much to say about the love of our family (church and immediate). 
But I say all this to remind myself and others of some of the small ways we are not left alone as we struggle.  And of course there are all of the HUGE ways that God has shown His nearness, not to mention the fact that my son is in the room with me- ALIVE! And has been through open heart surgery and other surgeries. AND,AND,AND..........that's a separate post. But thank you all for praying for us, the fruit is beautiful.

Psalm 61:1-3
"Hear my cry, O God, listen to my prayer; from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy."


KR said...

Glory to God. I thank God for you and Noah...and all those along the way that sowed seeds in your life to produce this fruit in this season. You are a mighty witness.... may the blessings be abundant. Praying for Reed, his parents and all those you're reaching with your presence in that unit. You've reached this momma's heart today and I thank you.

Anonymous said...

Steph, I can't even begin to tell you how much your faith through all of this has encouraged MY heart, to see how it looks to be completely broken and still giving our God all the glory and crying out to Him in a way that reflects despair, but hope. I know that God is using you guys to do big things in so many people's hearts, and it is awesome, even when it comes in unfortunate circumstances. Keep it up.
I love you all so much!
Praying still for quick healing and strengthening, and for Reed and his family...I worked with a baby with a very similar sounding condition who was 10 months old and still going strong, and I hope he still is now.

Sylvia Goode Basham said...

Yes, the Lord is our Shepherd, but what keeps coming to my mind is that our Shepherd is the Lord's! He's beautiful. We're praying....

Gail said...

God gave me these songs as I was worshipping at the keyboard over Shepherd tonight:
This is the air I breathe, This is the air I breathe, Your holy presence living in me. This is my daily bread. This is my daily bread. Your very word spoken to me. And I, I'm desperate for You. And I, I'm lost without You.

Hide me now under Your wings. cover me within Your might hand.
When the oceans rise and thunders roar, I will soar with You above the storm. Father You are King over the flood. I will be still and know You are God.
Find rest my soul in Christ alone. Know His power in quietness and trust. When the oceans...."

Be still, for the presence of the Lord, The Holy One, is here. Come bow before Him now, with reverence and fear. In Him no sin in found, we stand on Holy ground. Be still for the presence of the Lord, the Holy One, is here.
Be still, for the glory of the Lord is shining all around. He burns with holy fire, with splendor He is crowned. How awesome is the sight, our radiant King of Light. Bw still for the glory of the Lord is shining all around.
Be still, for the power of the Lord is moving in this place. He comes to cleanse and heal, to minister His grace. No work too hard for Him, in faith receive from Him. Be still for the power of the Lord is moving in this place!
Praise to the almighty God. Our trust is found in our worship of Him. I put Shepherd's name on a slip of paper and just worshipped over him, you and Noah with whatever God gave me. He is always faithful to deliver us with what we need at the very moment we need it. Not a moment too soon nor a moment too late. He is faithfull indeed. Love to you all.

Erica said...

Chylous effusions, I think might be what he referred to. The draining fluid looks milky? It's a common thing to watch for following a Fontan. Usually the kids end up on a low-fat diet/formula w/ low triglycerides.

Team Reed said...

I've been chewing on 1 Peter 1 all week and now it is chewing on me... thought I'd share and how you've put feet on theological reflection. Love ya'll. New mercies await tomorrow... Josh for Team Reed

1 Peter 1:3-7
"Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God's power are being guarded through faith for a salvation ready to be revealed in the last time.
In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials,
so that the tested genuineness of your faith--more precious than gold that perishes though it is tested by fire--may be found to result in praise and glory and honor at the revelation of Jesus Christ."