Tuesday, January 24, 2012

Home!


It's pretty incredible being in the second full day home with 5 in the house!  Michael is doing great, on a wonderful schedule and up just one time in the night.  He's getting his rest and so is Mommy.  The boys are thrilled to have their Mommy and new little brother home and, quite frankly, so am I.  Forgive the lack of blogging the past two days.  The blog was very therapeutic for me during the past week and I will continue to blog about things in my life that move me, whether it pertains to Michael or any other members of my family, friends or Road experiences.  I don't feel led to start a "Down Syndrome Blog", although I'm sure I will reference some of the many resources you all brought to my attention.  Michael is now a part of our lives.  Down Syndrome is now a part of our lives but I don't think it will define us. 


We have an incredible support base through our church, very near and dear friends who help us through life, whether it's being there for Sarah when I'm on the road, helping us with Nicky and his health and allergy issues and I know they will continue to be there for us with Michael.  Pittsburgh seems to be a wonderful place to live when you have a child with DS and one of my dear friends in Christian Music is Jeremy Theissen, the drummer from Downhere, who I will be touring with again this Spring, has a 3 year old boy, Liam, with Down Syndrome.  We will have much to talk about.  

We're not worried.  We're not scared.  We have no reason to fear.  We have nothing but love and joy to experience through the lives of our three children.  


Thank you all for your generous offers of practical assistance to our family.  One day, and that day may never come, we may call in those favors! In the meanwhile, I pray you've found some encouragement from our recent journey, I know we couldn't have journeyed the way we did without our cyber-community loving us with the love of our Lord!

Thank you again so much!  

What's on our hearts: Michael's Complete AV Canal Septal Defect will require the heart surgery that so many of you know about.  If you don't know, sometime in the next few months, he'll have to have that surgery.  We won't know when until his heart fails.  We're praying for peace and wisdom. 

Friday, January 20, 2012

Michael Update 5 (O2 and Hearing!)

Daniel, Nicky and Levi: Play Day! 
Michael passed his hearing test today with a SMALL Nuk.
I dropped off Daniel and Nicky with their friends Levi and Jade around noon (thanks Joel and Chelsea!) and headed down to see Sarah and Michael.  The audiologists got him all patched up for his hearing test, which evidently you can sleep through when you're 8 days old.  He passed with flying colors.  We learned that people with DS often have Eustachian tubes that are horizontal and not angled and are therefore more prone to ear infections.  Daniel had a million and Nicky had zero...so time will tell.  His blood-oxygen level was much better too, so his pulse-ox monitor was removed from his foot, enabling Sarah to wrap him up a little better.  One less thing that he's plugged into.  And he's eating like a champ still.  Keep in mind, he's currently at 5lbs 2 oz...1 oz away from where he was at birth, but he was down to 4lb 15oz...so this is an improvement. 
Whatever, Dad. 
Our long time friends, Howard and Cherie (Papa Howie and Gramma Cherie to our boys) who lead our church's children's program came by to visit and brought a packet of cards that all the kids made Wednesday evening, welcoming Michael to our world.  They were adorable to read and pretty entertaining to see the personalities match the cards.  We had some good laughs. 

Sarah and I shared a quick meal from Panera, then I kissed half of my family goodbye and headed home for the other half.  I sat in Pittsburgh traffic, which I enjoy for some reason, and listened to K-LOVE, blessed by the words of friends and singing along with their songs.   Well, I listened driving up hills, I lose reception driving downhill when leaving the city because my motorized antenna is broken. :/
Nicky fell asleep on the drive home. Tired and at peace.
Tough times are inevitable.  Being surrounded by love in the meanwhile (especially love that is responding to God's love) makes all the difference.  I'm truly a blessed man. 

A Word From Max

I received a devotional book as a birthday gift from my parents during my first "official" tour.  Well, my first tour ever.  A twelve city tour with the amazing Nichole Nordeman in 2005.  The book was Mocha with Max, a collection of thoughts from Max Lucado and to this day it is one of the most focusing little books I frequent.  This morning I read an entry I'd read a thousand times before, but today it was different: 

"One of God's cures for a weak faith?  A good, healthy struggle.  Several years ago our family visited Colonial Williamsburg, a re-creation of eighteenth-century America in Williamsburg, Virginia.  If you ever visit there, pay special attention to the work of the silversmith. The craftsman places a ingot of silver on an anvil and pounds it with a sledgehammer.  Once the metal is flat enough for shaping, into the furnace it goes.  The worker alternately heats and pounds the metal until it takes the shape of a tool he can use. 
  Heating, pounding.
    Heating, pounding. 
      Deadlines, traffic.
        Arguments, disrespect.
          Loud sirens, silent phones.
            Heating, pounding. 
              Heating, pounding. 

Did you know that the smith in silversmith comes from the old English word smite?  Silversmiths are accomplished smiters.  So is God.  Once the worker is satisfied with the form of his tool, he begins to planish and pumice it.  Using smaller hammers and abrasive pads, he taps, rubs and decorates.  And no one stops him.  No one yanks the hammer out of his hand and says, "Go easy on that silver.  You've pounded enough!"  No, the craftsman buffets the metal until he is finished with it.  Some silversmiths, I'm told, keep polishing until they can see their face in the tool. When will God stop with you?  When He sees His reflection in you. "

Thank God for His timely words.  I want God to see His reflection when He looks at me.  

ps.  Michael ate like a champ again this morning.  :)

Thursday, January 19, 2012

Michael Aaron Update 4

Michael Aaron - 6 days old. 
Michael ate like a champion today.  He was required 35 milliliters per feeding and decided he'd consume 40 to show the hospital staff how it's done.  

Sarah continues to Blaze the Light of Jesus in Michael's little NICU room.  There is no doubt in my mind that God is using Michael's birth and his mother's journey in his first week of life to call more than one person to Himself.  Tears are shed and questions raised that lead to answers about our Sovereign God.  

Since Daniel and Nicky have been only slightly on the stuffy nose and coughing side of health, we've kept our distance from Michael the past few days and I've tried to spend as much time with the boys as possible.  We had another 'sleep over' in daddy's bed last night, and spent the majority of our snowy day in the basement with a fire going, playing Battleship, Wii and freeze tag in our pajamas.  I think it was therapeutic for the boys, I know it was for me.  

The past few nights, once the boys are bathed, in their PJs and in bed, we call Mommy, put her on speakerphone and say goodnight.  She prays over the boys, tonight each of the boys sang a song to her while I strummed, it's a sweet time.  One more thing that gives those boys a sense of security.  But I look forward to those moments not being over the phone.  I pray it's sooner rather than later.  I'm ready for my family to be together.  ...but that's just me being selfish. ;)

This just in: last feeding of the day: Michael consumed 45 mls!  Sarah said "This is a different kid from two days ago.  He's turned into a piggy!"  I thank you for your prayers that turned my boy into a piggy. 

Wednesday, January 18, 2012

Michael Aaron Update 3

Such a strange, beautiful but delicate place I find myself right now. I'm utterly overwhelmed and blessed by the encouragement and advice flowing in, and for those of you who mention that their comments may never reach my eyes, be assured, they all do, before I click the word publish. At that point they become public in order to bless others.

I know that Michael's story has become relatively more public than other birth stories, and I find that to be slightly disquieting. He is special, to be sure, but no more special than every other child that I've read about in your comments, any other child on the planet. We're deeply moved beyond words that radio stations are sharing our story and are asking you to pray. Yet I feel inclined to say that I don't believe that because of that attention, our Omnipotent God is necessarily more likely to act. That could mean prayers of people with a greater number of Twitter followers or Facebook likes would be more likely to experience answered prayer. I absolutely believe in the power of prayer, and I believe the mystery of the purpose of prayer may go deeper than we tend to give it credit. But, for those who disagree with that thinking, let me state that I am not asking you for prayer. I will tell you our story. It's up to you whether you pray, not pray...or unsubscribe. :)

We know from Scripture that the prayers of just one man can move the heart of God (Abraham interceding for Lot or Elijah praying it would rain) and I know that when I draw near to God, through prayer, He draws near to me. When I surrender to His will, my will becomes secondary. Prayer is beneficial to me in far more ways than just receiving affirmative answers.

So. Here's our story for the day:

Starting at 3am, my two oldest boys (5 and 3) walked down the hallway and crawled into bed with their daddy. We have always encouraged our children to sleep in their own beds. Exceptions are utterly marvelous. ;) In the morning, I got the boys ready for school, Classical Conversations, where Daniel, my 5 year old, gave his weekly presentation, this one on his family. Daniel took his place in front of the class.
"My name is Daniel, I have a brand new brother. His name is Michael Aaron Shust. He is 5 years old (he meant days) and weighs 5 pounds. He has Down Syndrome which means he will smile a lot, laugh a lot, share his toys very easily and give lots of hugs. It also means his heart is very sick and will need surgery to fix it. He is my brother and I love him and I can't wait for him to come home."

Then he passed around the picture of himself holding Michael, the one I posted yesterday, and asked if there were any questions. I was so proud!

Michael's Bilirubin is down. :) His cultures are good, but his weight is still low and he didn't eat very well today. But tonight at 8pm he ate his entire bottle, no need for the the feeding tube...that he completely yanked out for the 3rd time. Ouch. He's a feisty kid for having low tone. ;)

Sarah is still rocking the NICU. I asked her today how she was doing emotionally in the hospital non-stop. "Oh I'm fine," she dismissed. She was wired to handle this. Thank you, Jesus. I was not. Get this: a nurse cried in Michael's room this evening because of Sarah's "spirit". She said she couldn't imagine what Sarah was going through but she was handling it so well. Sarah said it was a totally open door to share the love and sovereignty of Jesus with her: "Worth more than a little extra sleep," she said. As I type, the nurse had just walked back in to hear more!

My friend Laura Story asks:
What IF the blessings come through raindrops?
What IF the healing comes through tears?
What IF a thousand sleepless nights are what it takes to know Your near?
What IF trials of this life are Your mercies in disguise?

You still wanna be blessed? :)

Tuesday, January 17, 2012

Michael Aaron Update 2

The Day: What a day. I held the fort at home. Successfully made oatmeal that the boys actually liked this time (just add more brown sugar, dads, you can't go wrong) and ate some amazing Chicken Parm that my neighbors brought over for lunch. I also enjoyed it as a midnight snack last night and plan on repeating that event tonight.

Daniel had some sniffles, so the boys didn't go downtown with me today, too precarious of a situation with Michael, so they played with friends and I headed to the Hospital with the primary purpose of moving Sarah's stuff out of the NICU sleeping room that she got "kicked out" of (I don't know why) and move everything across the street to a hotel that my amazing road manager Greg Anton Lee booked within about 3.5 minutes of my emailing him a plea for help. (No, that's not part of his job description. I owe him a box of Twinkies or something.) After I set up her room, I headed back to my friends' place who were watching my boys and they had dinner for us. Also phenomenal. Now the boys are bathed and tucked into bed after the evening serenade. (To which Nicky head banged and smashed his nose on the etch-a-scetch on his pillow.) Sarah called and informed me that the Hospital found a room for her and she and a dear friend moved everything back from the hotel to the hospital. And the hotel isn't going to charge us! That was a Quality move Inn my opinion.

Michael: His cultures are coming back clear from the sepsis: great news! He's not drinking the prescribed 35 mls per meal, so they're still pushing his feeds through his NG tube. Not as good. They won't send him home with a tube like Nicky did. His vitals seem to be strong, considering. No word yet on how soon he'd be coming home.

Sarah is strong and getting some more rest. She plans to sleep through the nights now and I'm quite happy about that. She plans to stay by her boy for as long as she is able. While I would love to have her here at home right now, and Michael too while we're stating the obvious, I admire and respect her desire to not leave her baby bird with a broken wing. She knows what she's talking about and she's Michael's biggest advocate there. My wife grew up with such an insatiable thirst to be a doctor, and though life led elsewhere...now we think we know why she did. She knows stuff about the medical procedures that the average bear doesn't. And she often comes up with suggestions to consider that people in the room hadn't yet. No offense to them, she's just thinking about one case and one case only. (I'm referring mainly to Nicky last year) But she insists on sitting in on the Doctors morning pow-wow. I admire the mess out of that lady.

Me: I'm good. I'm probably spending too much time online and on the phone, but your comments are still breathing life into my bones. Some make me laugh out loud and shed tears at the same time. I can't wait for that little guy to come home and join the rest of his Shusts.

Despite the turmoil, the evidence of the Spirit is all around.
In the Love of the saints,
The Joy of the Lord,
The Peace that passes understanding,
Through Patience in the face of uncertainty,
Through Kindness from you,
In the Goodness of the food you cooked!
In the Gentleness of my boys as they hold and caress their baby brother.
In the self-control of my wife when the hits just keep on coming.

...or maybe that's Trust.

Resting in the arms of the One who won't let go.

Monday, January 16, 2012

Beautiful Aftershock

What an incredible past few days. Months of emotions were packed into hours. I wrote the last blog a little over 24 hours after our boy was born and we discovered that he probably had Down Syndrome. My emotions were true to where I was, where we were: raw. That was Saturday morning and now it's Monday night. 227 life-breathing comments on the blog later and a good many more on Twitter, Facebook and my website and Sarah and I are excited about this new adventure that God has plopped us in! :D The tears that we have cried have gone from shock and fear to utter awe at God's magnificent love evidenced through each and every one of you. It's like you conspired to make your stories all the same..."We found ourselves in the same situation, we were afraid, but that passes and your boy will be the biggest blessing you could never have lived without!" I swear half of you adopted more babies with DS after your first. And none of you corrected me for spelling Down Syndrome wrong each time I typed it! (I fixed it, don't check) which tells me that somehow, and I have a hunch how, Christ has rubbed off on you in a big way and you know how to show GRACE to people who are wrong and not as far along as you are. Bless you, Bless you, Bless you! Not for the grammatical oversight, for the general LOVE you showered us with. (See, one should never end a sentence with a preposition...Ms Byrne.)

Aaron and Sarah emotional update: We are good. By the grace of God we are good. Thank you for your prayers and stories and encouragements.

Michael update: Michael has been in the NICU since his birthday. He acquired a staph infection that led to sepsis (Medical people, please offer me the same grace my grammatical friends showed me) they couldn't pinpoint what it was until last night. But were giving him an antibiotic cocktail and eventually his white cell count began to lower and is still coming down: great news.
He was having a bit of trouble eating so they gave him a NG (Nasogastric: nose to stomach) feeding tube. (Nicky had an NG, NJ, GJ and currently has a G tube...they were comparing tubes tonight). His bilirubin is up, so he's under the blue lamp, and his temp is low, so he's in the tanning bed.

He is an absolute doll and I love him to death. Sarah is staying in the NICU around the clock, just like she did last year with Nicky. I picked up my 2 oldest boys last night and brought them home for some 'normalcy', but we'll make daily trips downtown until they come home. I sang and strummed them to sleep tonight. The all request set list was Rest In the Arms by Daddy. Little Nicky and Oh Mommy by Daddy, The Chain Gang by Sam Cooke and Give Me Your Eyes by good ole Brampo Neap.

If I had no Hope. If we had no trust in a Perfectly Loving God's Perfectly Loving Plan...I wonder how nuts I'd be right now. Our very lives rest in the palm of His hand. There is no need to fear.

Saturday, January 14, 2012

Michael Aaron, Our Special Angel.

Yesterday morning at 4:19am my third son was born. I've know for years that if God blessed us with a third boy, I wanted his name to be Michael. Michael is my middle name and somewhat of a family name as well. I only recently warmed to the idea of giving him the name Aaron as a middle name. I liked the connection it made to the Shust family (both Daniel and Nicky are named after family members) and thought it would give he and I a strong connection later in life.


Last May, while kayaking off the coast of Maui (how often will I ever get to say that?!) Sarah informed me that we were pregnant and we couldn't have been more excited. After all of Nicky's complications with EE and a near death experience or two, we weren't sure whether we could handle another child with all the care and attention Nicky demanded. But we felt strongly that we wanted more. God blessed us with another who, despite some complications in the pregnancy, grew to be a strong healthy little baby, due January 30th. The anticipation to such an event is palpable. The house starts to look like a baby lives there again as high chairs and cribs come down from the attic, the nursery gets reassembled and parts to the family band have long been assigned: Daniel on keys (or bass?), Nicky on drums (that was easy) so Michael will have to learn electric guitar. (That way when I'm old and cant afford Nate, Duffy and Coker, I'll hire my boys.)


At 37.5 weeks, Sarah had another of many sonograms and for the first time, doctors said that Michael should be much bigger. Within hours we were at the hospital and Sarah quickly delivered our tiny, beautiful Michael. Within five minutes a doctor told us that they were seeing strong signs of Down Syndrome.


The celebration came to a sudden halt.


Our Michael, who will be needing open heart surgery very soon for the often present AV Canal Defect, is in the NICU right now with an infection they can't locate, and Sarah and I have navigated the most bizarre, disorienting balance of being joyful over a new life surrounded by congratulations with grieving the loss of simple dreams we had for our boy and our life together, facing the unknown fear of how in the world to parent a child with Down Syndrome. We keep thinking all this is an absolute dream, because this is always someone else's story and never yours.


This story is ours, not just for today or for this year but the rest of our lives and as I type this I don't know what to do.


Sarah has had Psalm 46:10 on her heart for weeks. "Be still and know that I am God," and has felt the Spirit prompting her for about a month now to start a blog called "Down Came the Rain" and couldn't imagine why that title would make any sense unless our next child would bring more 'rain' into our lives. And she was pretty sure she couldn't handle any more rain.


And we can't. Joyce Meyer just tweeted that old saying that was cheesy to me before today: You don't need to know what the future holds, you just need to know Who holds the future. I've never cried before when I read that. But I did today.


Calloused and bruised, dazed and confused, I am not skilled to understand what God has willed or what God has planned, but my hope is in Him alone! God alone will receive the glory and the praise, He will watch over us in the darkest valleys and when the night seems long and He'll help us to see the way before us. All of my plans and all of my dreams, we lay before His feet. We submit to His design.


I get to remind myself of these truths every night I sing them.


Sarah and I now fearfully look forward to raising a second special-needs child, knowing that God has something up His sleeve! And that something will bring Him positive attention: glory. My resolve to be a good and faithful servant in His sight grows stronger. And I have a feeling we will see a lot of Jesus in Michael, our little angel.


Welcome to the Shust family, Michael. :)