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.


Auntie Bliss said...

Bless your hearts! He is a living doll no doubt! I've recently taken a teenaged girl from Guatemala to Vandy with hers and saw what all attention a Down's baby gets. You will be an encourager to other families from here on out. I'll be praying for you all!
Phyllis Covington
Ky/Tn border

Kavs said...

God bless you. Your family is such a blessing and in spite of all the trials you still find time to blog. Wow! Thanks for being an inspiration.

Mikayla said...

Aaron, I realize that you have probably been told this a million times…. as you are facing the possibility of a baby with Down Syndrome, words can't describe what you go through. You are in love with this beautiful little baby, but everything you have heard tells you that you don't want something that is not perfect. But then you realize that this baby IS perfect- and is exactly the way God intended him to be. Having a baby with Down Syndrome is one of the most beautiful things that has ever happened to my family- and let me tell you what- we all love this(now 3-year old -the youngest of 11 kids)child to death. I really can't explain why or how, but in a year, you would not trade him for a dozen Einsteins! Just wanted to let you know- you are blessed beyond what you can imagine, and I rejoice with you in the birth of your perfect baby boy!

divasmom1212 said...

I have worked with children and adults with Down Syndrome, and I can tell you that they have this most beautiful pure love in their hearts, that is so very special, almost angelic. :) Michael is a precious baby! What a lovely blessed family you are! I'm praying for healing for his little body, so he and Mommy can go home!

Emma McGarity said...


Thanks for sharing the details of this journey with us. You all have been heavy on our hearts, and we are happy to hear Michael is improving. I'm sure that if he continues to improve, they'll let him join you at home once he is able to eat enough to gain weight without the supplement from the tube. We will continue to pray for you all.

PS. Oatmeal... brown sugar makes all the difference. If you haven't already, try using milk instead of water, add a pinch of cinnamon, and slice a half banana in each bowl once the oatmeal is ready. My kids love oatmeal this way. :)

Laura E said...

Hang in there, Aaron! You'll have your family all together in no time, and God will bless you!

Natalie said...

I was directed to your blog when Michael W. Smith posted it on his FB page. Just wanted you to know that I am praying for your entire family tonight and will continue to do so!

evashwarden said...

I would never say "I know what you are going through"...so I won't. All I can offer you is hope. My husband and I found ourselves in a somewhat similar position years ago when our son was just three. He wasn't speaking and was delayed in other areas. Long story short, he had hearing loss that had gone undetected. We went through months of testing to find out he was also considered mildly mentally retarded. I wept for days...loudly! My heart was broken that my God had not protected my precious boy while inside my womb.
But, the story didn't end in that doctor's office...or after the days of weeping and grieving my hopes and dreams I'd had for my son. My life began again. The slate for Eli's life was wiped clean, ready for his Father to write a masterpiece. I now know what it truly means to have a "special" child...I know why people call them gifts. Not everyone gets to see one such special person up close and watch their story of triumph and love and courage unfold! I was chosen to receive such a GIFT!! Eli continues to defy the odds.
Your sweet boy is so precious! He has good parents who will lead him to the Father who will write a masterpiece if his life! It will not always be easy, the challenges that lie ahead, but God always comes to our rescue when we lean on Him. Thank you for sharing your son with us. I pray he comes home to you all soon!!

lcknights said...

Praying for you and your family. This is one of those Divine Intersections in your life where you get the opportunity, once again, to walk with the One Who ordained it all. Seize this moment. Rest in the care of the One who breathes the stars into existence and calls them each by name. He has blessed you with this opportunity to show the world that all children are precious in His sight. Thank you for lifting us up and working so hard to bring us to the throne through your music. It's our turn to carry you to that same throne.
Because HE lives...
Fayetteville, NC

mamamia said...

My hope is in You- is one of my favorite songs on Klove. Your family is walking God's path and He will never steer you wrong. Your sons are absolutely beautiful and Michael has reached so many fans already, including Me! I can't wait to read your new posts and see pics of his sweet face. Congratulations proud daddy! enjoy your chicken parm, i will go eat my ritz crackers now, lol :

Anonymous said...

Beautiful baby, beautiful family! Every road traveled is different, but there is no doubt in my mind that Michael will be such a blessing, not only to your family, but to so many others. My 13-year-old daughter is a precious gift with global special needs of an unknown cause. I wasted so many years trying to make her better--more normal,if you will. But God had already made her the best, exactly as he wanted her to be. She has taught me so much and reflected Jesus Christ to countless people. Grieve the lost dreams and the roller-coaster ride (give yourself permission to do this), but accept and embrace that little guy for the miracle he is. To borrow words from a wonderful song, "Sometimes Miracles Hide," by Bruce Carroll, "God will wrap some blessings in disguise," (in my opinion, often the best ones). I will be praying for you and your entire family.

Shannon said...

My baby spent 9 weeks in the NICU because he was 11 weeks early. I know first hand how stressful this time can be, especially with other children to care for, too. I'm sure you probably already know this and are doing it but just in case you don't know, I'd like to mention Kangaroo Care. Skin-to-skin with Mommy or Daddy as often as possible. It's been proven to be a tremendous benefit for all babies, but especially those with health complications. It's been known to help decrease the length of NICU stays along with getting milk from Mama.

My prayers go up for you and your family and precious Michael Aaron. God bless you!

Jane porter said...

Sarah is proving that the same determination and perseverance she displayed as a young girl is serving her well as a strong mother bear. Continued prayers for wisdom and insight as you both navigate this new journey.

Julie said...

"You assemble all our broken, shattered pieces/ More beautiful than I have ever known."
Your own words have blessed me so much in the broken times and I have seen God put the pieces back together so many times. I pray you will see something more beautiful than you have ever known as you journey on with God and with Michael.

Heidi said...

Thank you for sharing an update. I'm sure you know God handpicks our children for us and knits them together perfectly in His eyes. I pray for strength today and that mom and baby will be home soon! God bless your family today!

stephanie said...

Congratulations!!!! Michael is beautiful!!! Found your blog from another blogger and just wanted to send some wishes prayers and blessings your way. You have entered an amazing world. You have been given am amazing gift... i know you know!! Just , welcome aboard!! if you ever need support or anything there is TONS of it out here! From families who just "get it" and have been exactly where you are right now.
God bless and I'm delighted and excited to follow along!
btw, my daughter Emilia Faith is three and has Ds too.

Sherry said...

God has gifted you with an amazing talent for bringing GLORY to HIM through you writing Aaron. Now he is giving you and Sarah another opportunity to bring GLORY to HIM as you raise this special little guy. My family is praying for you all. Cannot wait to watch the beautiful masterpiece unfold.

Stephen said...

Hey Aaron! We are praying for you and your sweet family. I am so thankful for the opportunity you guys have to hold onto each other and onto the Lord in all this. God is so good. Much love, Stephen and Rhonda Janes (we went to Toccoa with you ;))

Mom-Mom Kathy said...

I just read about Michael and have to tell you......8 years ago my daughter gave birth to my precious Evea. They knew beforehand that she had Downs (that's another miracle). The medical team stood at the ready as she was delivered--because the sonogram had shown a heart defect that needed repairing immediately after birth. I will never forget the "peaceful silence" that fell over the delivery room that day.....as Evea was wisked away for a cardiogram....only to find that she did not have the defect at all! Now--8 years later.....she is the joy of our lives.....and, like one of your earlier "posts" said.....we wouldn't trade her for the world! She is so full of love, and happiness--and always brings laughter and warmth into our home when she visits. No doubt--you were chosen by God to be Michael's parents.....and how "special" is that??

HB said...

We're praying for you and your family, Aaron. God is working and has chosen you to be the father of this beautiful baby boy. He'll strengthen you and give you what it takes.

Transistor1 said...

You and your family are such an inspiration by keeping your faith strong in the midst of trials. I only hope that when I'm challenged that I don't fall but follow this great example you've set. Praise Jesus!

H Thomas said...

Praying for you all. God is with you. Heidi

Caleb's Mama said...

I heard about your new baby on KLOVE yesterday and I have been praying for your family since then. I know that there are no words that can really comfort you at this time, but I hope you all know that it is okay to grieve the loss of the healthy baby that you expected. I am sure that it is overwhelming to have two children with special needs (I only have one and sometimes I am stressed to the max!), but hopefully your experiences with Nicky will help your family as you deal with everything that Michael is going through. Also, there are many groups on Facebook and other websites where parents of special needs children support each other. You may want to look into that because it has been incredibly helpful for me to talk to other parents who are going through a similar situation!

Katy said...

Aaron and family, I just came across your blog today, thanks so a friend. I wrote a whole big comment on your first post after Michael was born, and then wasn't able to post it. Now I know why. I am so thankful to read your updates. My youngest, who will be 2 at the end of March, also has Down syndrome. I am journeying with you. When I read your first post, I cried with you. When I read your updates, I rejoiced with you. Through it all, I will be praying for you. My little guy is one of the most amazing blessings I could imagine. I couldn't write enough in this comment to tell you what an amazing God we serve, who has entrusted us with this wonderful little boy. I know that you will still have hard days, but it does get better--and not just "better", it gets GREAT. Praying for his feedings (our little guy had the SAME problem--it took him about 5 days to eat enough on his own to take the NG tube out. It seems like such a "blip" on the radar now, but seemed like an eternity at the time.), his heart surgery, and rest and peace for all of you. So glad that you have such tremendous support from family and friends--it makes such a huge difference.

Susan O'Leary said...

Thank you for sharing your heart with us. You are such a blessing to me. Despite what you are going through, your faith is strong and you are quite aware that God has your life and the lives of your wife and dear baby boy in His hands. That is the only safe to be! Your family is my prayers. I pray that you will all be together very soon.
Susan O'Leary (Patrick's sister)

RN1979 said...

Dear Aaron,
My name is Kathy. I am an R.N. in a NICU in Virginia. I have worked NICU for 32 years now. Good Grief!
I was listening to WGTS 91.9 this morning and heard the story of Michael, his diagnosis, and your Blog. Read your blog.
I just wanted to encourage you and your wife re: Michael. I have very close friends whose 5th child was born with Down's Syndrome. Matt is now 17 and is a brave, wonderful young man. He had multiple heart surgeries when he was a baby and little boy. He came thru just beautifully! Matt has now 4 sisters and 1 brother who adore him; he is so abundantly loved and appreciated for who he is! :) Matt hugs anyone who will let him! He is a joy to be around.
Your vocabulary re: NICU terms is amazing. Every word was "spot on"! Impressive! Every word!
It is most difficult, I have found, when parents do not find out prenatally that their baby has Down's Syndrome and are at least somewhat able to "prepare" emotionally for the situation. The news is a shock to the core of your very being... That I know; seen it first hand with friends and family. But, what I have learned and truly believe is that God places children - now little, beautiful Michael - into just the RIGHT family for him! The devotion of your wife to remain at his side; your love for him and your other children; you and your wife persevering thru all of this in spite of what must be bone crushing fatigue - all of this - just shows how perfectly Michael was placed. He was gently layed into the arms of you and your wife by the very hands of God.
I hope they are allowing you and Mom to do "Kangaroo Care" with Michael. I'm sure you are very knowledgeable re: the term. If not, Google is your friend (as it is mine!). Holding him skin to skin, letting him hear your heart beat and smell your "smell", and feel the warmth of your body - irreplaceable in his world of NICU care.
I apologize as a NICU nurse, if you are unhappy in any way with the care that you, your wife, or Michael are receiving. Honestly, most people who work in a NICU love babies and try to do their very best with both babies and their families. But we do falter - sometimes often... Being Michael's constant advocate is indeed the answer. He needs that! :) He needs his parents. As you said, you see "his case," rather than all 10 or 20 or 90 babies in the NICU... I will continue to read your blog and pray for you, your wife, your other children and of course Michael - at least Daily! I thank God I was listening - really listening - to WGTS when I heard them talking about you! I hope today is a day full of "improvement," peace and joy for all of you! God Bless - truly - God Bless your Family! Kathy @ RN1979@gmail.com.

Runningmama said...

Oh, I have been there. 3 years ago this May God blessed us with our baby girl Emily, who also sports a little something extra. We had no idea, just like you. I often tell people she is the blessing I never guessed I would want, but God knew I needed. I don't think I really knew the meaning of unconditional love until Emily. Michael will bless you in ways you never imagined, but I am sure many have already told you that. But, I will say...allow yourself to grieve...this wasn't what you expected because once the grieving is done, the blessing on the other side takes your breath away :-)

We started a blog after our daughter was born and incase you want to see just how fabulous she is you can take a look :-)


Britt Taylor said...

Aaron and family, Eleven years ago my family went throught the similar situation. My mom gave birth to twins. The were children number five and six in our family. Within minutes of their ten week too-early birth, one of the twins was diagnosed with Down Syndrome. It was a day to day to challenge in the beginning just to hear if they would survive to the following morning. They flourished with health, Praise the Lord. The Down Syndrome brought more daily challenges, and still does but throughout everything God has remained faithful and ever strong for our family and the things we face. There are easy days and harder days. I choose not label anything a 'bad' day as it is always the day the Lord has made. The world looks upon my little sister as 'challenged' or 'mentally handicapped' but they don't see the light of joy that pours out of her every waking moment. She has taught me so much, right down to enjoying the basics of life. You and your family are on a devine path with God. A path that you will need Him for but will be worth every moment.
Britt Taylor

amy said...

First of all Congratulations! We also recently became the proud parents of a child with Down Syndrome. Myra Faith was born November 11. She also has AV canal and is expected to have surgery sometime in March. I have to admit initially I was terrified and broken hearted. You see we also have had many "hits". Myra is our sixth child and our fourth child was diagnosed with Acute Myeloid Leukemia when he was two. Praise God he is 8 now and cancer free! We live with my parents and I am a caretaker for my mother who the year after our son was diagnosed with AML came down with Bacterial Meningitis (she had lupus and liver disease prior). It was a miracle she survived and since then she has received a liver transplant and suffered through a ruptured colon. She is blind now and I stay with her during the day while my dad works. There are some other difficult circumstances that we are dealing with as well....too long to go into....but needless to say I related to your story. In the short two months since Myra has been here it is amazing the way God has worked on and opened my heart to this little girl. Having Myra has forced me to look deeply at myself and my faith. I struggled with the why of it all....more specifically the why us when we have already been through so much. Then I realized that having a special needs baby makes us special too. God CHOSE us to be Myras family! Jeremiah 29:11. Today I find myself so completely thankful for her and excited for the journey ahead and this new direction the Lord has set us on and all that He will show us and teach us through her. Michael and Myra are precious and beautiful and perfect in our Savior's sight and that is all we need know. My dad pointed out to me that none of this matters....all the worldly concerns I had for Myra. All that matters is getting ready for the world to come....what better way than to have an angel delivered right into your arms. An angel to teach us what is really important and beautiful and to strip and chip away at our ties to this world.
May God bless your little Michael, your family and this journey that He has set you on! Looking forward to following and "singing" along! :)

Kevin Troupe said...

We are praying for a smooth transition for your family to receive and embrace your new blessing. We are now 10 year veterans of raising a son with special needs...born with CHARGE Syndrome. Not a day goes by that we fail to see the unique fingerprints of God in our lives. I write a blog called "Lessons from the book of Matthew" http://lessonsfrommatthew.com with stories of our experiences on our journey as parents and from the view of Matthew's siblings...blessing to all of you, Kevin

It's nearly impossible to remember all you have touched and met...my daughters and I drove you to the airport after your time with us at Calvary Church in Grand Rapids last summer (the one that we moved inside due to rain)

davethecfrre said...

Aaron, I'm a fan and also happen work for a large chapter of the Arc of the US in Allegheny, Beaver and Westmoreland Counties (including Aliquippa) which serves people with intellectual disabilities, including Down Syndrome. If you haven't been contacted yet, make sure to reach out to the Arc chapter (they're usually countywide) closest to your home. They'll have tons of resources for your son and for your family.

God Bless,

Dave Tinker

Alaina and Kyle said...

Welcome to this world Michael and welcome to you from one DS family to another. This will truely be a roller coaster ride for you all but boy will you be better people in the end. My son is such a joy and blessing in our lives and I can't wait to see what Micheal does in the future. You can learn about my son Beau and our family at


Welcome again and Congrats!!

Steiner said...

Hey Shust, I've got nothing to say but I wish I could give you a hug. Praying for you guys.

April Vernon said...

I found out about your precious Michael through another blog that I follow. I have a 19 month old with Down syndrome, and I cannot describe the wonderful richness he has brought to our lives. Your music encouraged me through some of my raw emotions in the beginning. I can assure you of this...not just will things be okay, but things will be GREAT!

Please share my blog with your wife, as I share tips and info about our little guy often. I would love to help in any little way I can. You all are in for a beautiful ride.

Oh, and the brown sugar trick works at our house, too ;)

-April Vernon

Karly Jaco said...

keeping you guys in prayer. you have a beautiful little boy. my ava spent 6 and a half weeks in the NICU and I was stuck in a wheelchair and barely able to visit her. I'm so glad your wife is able to be with him so much, it will help lift your spirits greatly being able to be with him so much. Praying he does well with his surgery and any other issues that need to be worked out. Praying he gets to be home with you all as soon as possible...that moment when you finally get your whole family home together is just BLISS! to God be the glory in it all. He is working this for His good, and you have already blessed so many people just by sharing your heart. God bless.

Laura Watts said...

Although you have so freely given your thanks to all of us for our healing comments, I must tell you how thankful I am that you are willingly to openly give your heart to so many of us that you have never met. I have shared your blog with the families I work with at the Down Syndrome Center - literally hundreds on my email list :) and I have received grateful feedback from many - several of whom do not have the life-sustaining faith that so clearly resonates from your story. So even without realizing it, you have moved from being the recipient to also being the giver of encouragement and hope. We will continue to pray for you.

Cindy J said...

I heard the news on Christian radio this morning on my commute into work. As I listened to Michael's story, I began to tear up. About that time I came upon a dump truck that had Isaiah 54:17 on the back of it. I was led to share. No weapon formed against you (your family) shall prosper. Michael and your family are in my prayers. God bless you all. May He be glorified.

Unknown said...

My son had a ng tube as well, he went home from the hospital with it. We found out after trial and error that is was hard for him to drink or eat with it in. See if the doctors will take it out when trying to feed. I am and will continue to pray for your family.

Blessedbyfive said...

You may feel overwhelmed, grieved, and confused now but soon all you will feel is the same intense love for your little angel Michael. I was blessed with Jedediah nearly 3 years ago and like you found at hsi birth that he had Down Syndrome and later the AV Canal heart issue. That boy is the best thing and our family of 7 love him so much. He has taught us to live each day and praise God for all He does. Jed is learning to walk, talk, loves trucks,dogs, hairbrushes, and is adored by all who know him. It has been a journey we did not plan but one I would never change. We pray his corrective surgery goes well and soon will have your baby home to adore. I can not tell you both enough of the blessing Jed has brought to us. God's Blessings and CONGRADULATIONS!

Kelly S. said...

I have been where you are. Third child with Down's. Once we were through the initial stuff and saw he was strong and healthy the fun began. He just started Kindergarten and is a total rock star at his school. He has taught us so much, and been more of a blessing than I could put into words. My other two are girls and they adore him (even when he gets in their stuff). BTW most people with Down's love music :) Owen can sing every song on KLOVE!
I am praying for his health and for you and your wife to be strengthened in the grace that is in Christ Jesus.
That extra 21st chromosome is LOVE!!

Becky said...

Oh my goodness, I love your blog. So, yes, God has put you on an absolutely amazing journey, one of which I have been on for the last four and a half years. This little angel with DS will grab onto your heart in a way you cannot even imagine right now. You have to go through your own emotions at your own pace in the beginning and adjust to a new sense of "normal". But, in the end, you will see just how perfect this normal is because nothing in God's plan is any other way. I will be praying for that precious boy to get home soon!

Dawn Strickland said...

I heard your story on the radio, simply as a prayer request.I cannot relate to having a special needs child but I can relate to tragedy that cuts to the core. Almost 3 yrs ago, driving home from church, my husband & youngest son were killed. The weight of losing 1/2 my family at once was unbearable. Yet, God never changes...His faithfulness is eternal. If I am to be like Him...shouldn't my faithfulness be eternal, as well? Scripture was my strongest encourager. Ephesians chapt. 3; Romans 5:1-5; Romans 8:18; Romans 8: 26-28;1 Tim 4:4....I dug into Scripture and held on with all that was within me. 1 John says, 'Greater is HE that is within me than he that is in the world.' 2 Cor. 1:4 "..who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God." This gave me an answer to 'why me?'. Many blessings/miracles have come over the years. The Lord then led me to Job 42:12a as my verse "The LORD blessed the latter part of Job’s life more than the former part." I encourage you to pick up "Jesus Calling" by Sarah Young. Somehow this POWERFUL devo reaches a personal level for each reader. I am praying that God continues to bless your faithfulness to be like HIM! May determination, grace, and peace be at the core of each of the Shust Family for all that the future holds.

The VW's said...

Congratulations on your blessing from God! This gift will change your life for the better! We were blessed with a similiar gift 5 years ago.....we named him Gavin. Through Gavin, God has taught our family so much, and given us such joy! Your family is truly blessed to have been given this chance to love a child, who will teach you and the world so many wonderful lessons! Many blessings to you and your family! May God give you strength, peace and grace as you care for your sweet boy!

BTW, I just found your blog today through another blog that had posted about you and your family. When I saw your name on their blog I was immediately surprised, because just yesterday I was listening to one of your songs on the radio, and I didn't know who sang the song. Then when I learned that the song was by you, I went home and looked for your song on playlist.com, I didn't find it on there, but having just learned your name yesterday, it brought me here to congratulate you on the birth of your son! Small world! Also, I have to thank you for your music! Listening to your newest song on the radio this week has brought me such peace and thanksgiving! So, Thank you! God Bless!

ch said...

Sweetest and best congratulations to you!!! What miraculous wonders await you all. xoxox

Summit of Glory said...

Welcome to the other side of the looking glass.... your life will never be the same.....Your little guy is such a gift. Embrace these first days as you are discovering all the wonderful things that are RIGHT with your little man. My son, now 4, had OHS at 5 months w a complete AV canal as well. It's an amazing surgery. You will endure. I'll be following. xoxo

RK said...

Congratulations on your new beautiful bundle!!!

I've not had a chance to read through all the comments, but I can guess, because I'm seeing this floating around the DS community, that you are or soon will be overrun with those of us who are just a few years ahead of you on this journey. We're crazy about our kids, usually try to surround ourselves with more every chance we get, and we advocate with fervor for every precious kiddo we hear about.

So I'll just add that our story at your point was similar in that we did the diagnosed at birth, NICU, NG, and AV canal thing. My girl turned 5 in November, and she just is the best thing ever, right there with her little sister. And as you get farther down the road, if the NG situation hangs around, there are many of us who can give you hints as to how to get around that "can't go home with a tube" thing. They like to say that... I often say that if we or they'd known that mine would have been on NG for 10 months, we'd not have wasted a month in the NICU waiting for her to "get" the feeding thing.

Hopefully you have a great support system and you've been given info about your local DS group. If there's anything I can share about NICU, NG, AV canal, or anything else, please don't hesitate to get in touch. braskasmom@gmail.com

Many blessings to your family. God has granted you a special peek at how true love looks in soft, snuggly skin.

Unknown said...

Hey there. This is Sarah Hammitt, you and Matthew are in the same profession:) As you know our little guys went through a tough time last year around the same time. I think of your family often. We are standing with you in this. We have lots knowledge as far as CHD's so if you have any questions let us know. I too was at Mr. Bowens bedside advocating and being his voice. I learned a lot first hand;) We are here for you and stand with you bearing in your burden and joy. I know that you know that in the darkest times Gods light is so bright. Your little man is absolutely adorable. I have always wanted a down syndrome child (think about adoption). When I think of all the ways a down syndrome person reflects Christ I am amazed. Oh how you will grow with this person as a part of your life. How exciting!

one_plustwins said...

God bless your family. I have two children with Down syndrome. Our first boy, Joseph is a fraternal twin, we received his diagnosis about 28 hours after the twins were born. He and Jackson are 4.5 years old now. Our second child, was born in our hearts in Ukraine, we adopted him in October of 2011 and he is now 3 years old.

Joseph needed an NG tube for two weeks; we came home from the hospital with the tube on day 2.

I know it may not seem like it right now, but you are about to embark on the most wondrous journey. Having a child with Down syndrome has been one of the biggest, most beautiful blessings our family has ever received from God.

I pray you peace as you work through your emotions. God bless,

Christie Taylor (Indiana)


Parents of Power USA said...

You are in my prayers. If you need me, I am here. Keep your head held high and keep that Dr. mentality. Refered by S. Wilson

j*e*n said...

Michael Aaron is such a gorgeous young man! Like many other commenters, we have a daughter with DS, and like Michael, an AV Canal defect. She is 4 years old now and simply amazing. I'll be praying for you!

Cathie said...

Congrats on your beautiful son! We also found out Ian had DS at birth (along with complete AV Canal Defect). Today he is a very sassy, stubborn and healthy 3.5 yr old that has made everyone in our family a better person. God Bless and prayers for Michael. C

Victoria said...

Thank you for the posts you've been sharing. You and Sarah will continue to be in my prayers daily!

guitarSevilla said...

Congratulations on the birth of precious Michael.
I will be praying for his health to improve and for your peace of mind.
My daughter Kate is four years old and has T21. She is amazing!
A little more work and therapies, but the rewards, the happiness, the love, the lessons I learn from her are all worth it. Really a blessing. You will find that out too. God bless you!

UA said...

It is so nice to hear Michael is improving. Aunt Mary and I are wishing you and Sarah the best and hope Michael improves enough to go home soon. Prayers are a given!

Gwen S said...

While no one knows exactly what you are going through but you, there are many folks (myself included) as you know who have walked this road before. I can tell you without a doubt my family is SO MUCH richer from our child w/T21. It is not the road we may have chosen, but it is a road I am so proud and blessed to be on. May your family experience similar blessings soo.

Hinz57 said...

Congrats Shusts! Michael is gorgeous! Our son is 5 years old and has DS - and was adopted. Michael will be the spark you didn't even know could light up your life. Keep blogging (its great therapy and plus - we want pictures) and know that you have a WHOLE COMMUNITY of families behind you every step of the way. Much love and lots of prayers!

Emilee Kaye said...

Thinking of you guys. He is singing over you-- No doubt. :)

''The LORD your God is with you,
the Mighty Warrior who saves.
He will take great delight in you;
in his love he will no longer rebuke you,
but will rejoice over you with singing.”
~Zephaniah 3:17

Abba, bring the Shust family rest, peace of mind, strength, and one magnificent obsession. Help them to be still in a time when they might not want to be. Jesus, be with Aaron at home. Give him strength to keep up with his responsibilities. Be with Sarah while living in a hospital being by her little one's side. I also pray that the boys might have an amazing understanding that only comes from You. {{As You wish; Let it be so.}}

Cathy said...

Just stopping by to see how our boy is...you see, once you are part of the Ds extended family, he's our boy too!! ;) He's beautiful!!! Keeping you in my prayers.

guitarSevilla said...
This comment has been removed by the author.
myboysnme said...

Aaron & Sarah,

First, I want to say CONGRATULATIONS!! As a brand new parent of a baby with DS, you tend to not get enough of those. Or at least, not enough of them that aren't accompanied by a sad look. I say it with a huge smile on my face, because I know what a gift you have been given. I was given the same gift 12 yrs ago. It hasn't all been easy, there have definitely been challenges (health related) but the one constant has been love. Pure love. That's my boy. He is love personified. He always sees the good in everything and everyone. He is always upbeat and happy. He is the joy in my heart and he has taught me so much. He is my hero.
I know that you're scared right now, but you already have the most important part covered...you love your sweet baby boy. You've got this!!!

Renee said...

In 2009, we had a full term stillbirth of a perfectly healthy baby boy. In the dark hours after his death, I went through a stage where I obsessed over these lyrics, "I am not skilled to understand. What God has willed what God has planned. I only know at his right hand, sits one who is my Savior." Over and over I revisited them. 10 short months later, we found out prenatally that our newest addition, Lucy, would have Down syndrome. Again, I was rocked to my core. And again, I found comfort in your lyrics. So....THANK YOU for staying true to the work God asked you to do because it sure did provide me peace in some desperate moments.....and WELCOME to the Down syndrome family. You're gonna love it! Congratulations on your beautiful baby boy.

Misty_Dawn said...

Just want you to know that the Bryant Family in Kentucky are praying for you and your entire family. We serve an amazing God.... He is always present even in those darkest times. He never leaves us. Trust Him with Michael. He couldn't be in better hands than the hands that took the nails for our sins. We love you brother.

Kellan's momma said...

I have a 27 month old son with Ds, he surprised us as well. I wish I could say that I accepted the diagnosis with as much grace as you have! Now, I try to help others cope. I have a young couple expecting their first child in March that are my first "referrals". I cannot imagine my life without my son. He brings a tremendous amount of joy to our family and everyone he crosses paths with!! There is a HUGE community of us in the online world, and I have made some very dear friends, most of whom I will probably never see face to face. There's a ton of support out there, but for now, just let him be your baby, not your baby with Down syndrome. All that can wait. Prayers for the little guy, he's a tough little fighter, I can see that in his eyes!

melissamaren said...

I love that you guys have already seen the magic of this amazing community! Down syndrome is such a blessing!!! :) xoxo


Erin said...

Aaron, we are strangers you and I, but we have a lot in common. I also have 2 children with special needs and have been praying for you fiercely as you go through the sleep deprivation and the shock. That being said, I believe that God is raising a tiny generation of warriors out there, thousands of tiny little warriors who bring light to the dark places in this world. Michael Aaron is a warrior for the Lord. His tiny little life is going to be the inspiration for so many. Watching your family walk through these obstacles will continue to bring hope to the hopeless. I believe it. And I can testify. My son who was born with a rare genetic disorder was also a shock to us at birth. But by God's grace and his infinate timing, the midwife that delivered my baby boy accepted Christ into her life, all because of that tiny warrior. God is good and his gifts are rich. So kiss that baby boy and help him get strong, he has a lot of people to touch.
Praying for you every step of the way Aaron.

The Peterson's said...

The Peterson family of Nebraska is praying for your family. We ourselves are in the process of adopting a child who is blessed with an extra chromosome. Because I am joining the Down Syndrome world in a much different way than your family, we have been given time to adjust and learn so much. Everything that I have discovered pushes my heart to say, welcome to this beautiful world.


Rochelle said...

Congratulations on the birth of Michael. What a sweet blessing.

We are blessed with a 3 year old daughter who has down syndrome.

Our hearts were rocked upon her arrival but, soon she opened up our eyes to the wonder and amazing blessing that God created her to be.

Through our experience, God moved us this last year and in July we adopted a 3 year old girl from Ukraine who also has down syndrome.

When we were sitting in the NICU those first few weeks we couldn't imagine we would be where we are today.

We are praying for Michael as well as your whole family. C

Bobbie said...

I want to just say that as I sit here and read your story, my heart aches, not with sorrow for the shock and surprise your family is surely feeling, but for the pain in separation and loss you are surely feeling while your wife and son remain in the NICU. I worked with adults for many years who were diagnosed with many things, among them Down Syndrome, and I must tell you that those moments were truly some of the closest of my moments to the Lord. They are a blessing, they are a salve to wounded hearts, and they are a miracle created in His own image. Two verses come to mind when I am praying for strength for little Michael, for hope and peace for you, and for assurance inall that He has created, imagined, and sees in that beautiful little boy your family is blessed to call yours.

Deuteronomy 31:6 Be strong and courageous. Do not fear or be in dread of them, for it is the LORD your God who goes with you. He will not leave you or forsake you.”

Isaiah 41:10 fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

In His grace and powers of healing,

Angel said...

I listened to some of your music to get through the emotional turmoil of my son being born with DS almost 5 years ago. Sobbing as I drove to and from the NICU, with the radio blaring and Christian music filling my heart with the messages I so desperately needed. It was a crazy first year (we also went through heart surgery), but we are so blessed to have our amazing son in our lives. We wouldn't change a single thing about him. He is a spark of light smack dab in the middle of our family. Loved and cherished by all who know him. :) Congrats on your baby boy!

Kayla Henretty-Sniezek said...

Aaron and Sarah, we are glad to read that Michael is doing a little better. We have been praying for him and for your family. I hope that you will be able to bring your precious boy home soon bc I know far too well what it is like to live within 4 walls of a hospital. Sarah is being so strong and when Ford was at Children's... I just couldn't leave his side either, a mother's fight. God has blessed you with an unexpected journey that will most likely be a rollecoaster but his will is perfect and I can tell you that Micheal will teach you and Sarah so many things. I ak God to continue to place his hand over your little angel and give him stength so that you can unite your family together. Tell Sarah that we will continue to ask God to give her perservence to advocate for your boy and hope that she can get the rest she needs. Also for you Aaron that you will have strength to hold down the fort all the while making your trips back and forth to the hospital. Micheal is in God's hands and there is no better place to be. Love you guys!!

Ethna Elizondo said...

Psalms 50:15
this verse has helped me in a really hard sitation im facing.. and i think it describes perfectly how we should react in every circumstance.. to glorify God in everything..

this is my greatest motivation in life.. maybe it'll help you a little bit..

probably too many videos.. sorry.. its just that words cannot express