Tuesday, August 7, 2018

It's Surgery Time!

It looks like another surgery is on the horizon for tomorrow!  This is scary and exciting all at the same time.  Sending our precious baby off to surgery never seems to get easier, and I don't expect that to change.  It's hard to send your child off to get cut into yet again.  It's hard knowing that so many things can go horribly wrong during even the most routine of surgeries.  It's hard waiting - waiting to get an update of how things are going in the operating room - waiting to hear how our son is doing.  It's hard when the surgery goes hours longer than expected with little to no updates...It's hard walking in seeing Samuel sprawled out, with his tongue hanging out of his mouth, not initiating any breaths on the ventilator, with new areas of glue or sutures, lines and tubes.  It's hard watching as he tries to fight the sedation - when we know he is in pain, but he doesn't understand and just wants to wake up.  It's hard seeing that look on his face...that look that I've seen too many times - that helpless look begging you to take the pain away, knowing that he desperately wants to be held, but realizing it will probably be several more days before I am allowed to hold my son again.

Nothing about this is easy.

BUT this surgery tomorrow has been much anticipated!  This surgery tomorrow will, Lord willing, be the completion of a saga that added 4 months to our stay in Delaware!  This surgery tomorrow will get rid of the bag on Samuel's stomach and allow him to have his first dirty diaper in 4 months!  (Who ever thought we would be excited about that?!)  This surgery tomorrow will allow Samuel's intestines to function normally - after being told 3 months ago that they were unfixable.

But Samuel is a fighter.

And God works in mysterious ways.

Lord willing, Samuel will have his reanastomosis surgery tomorrow. This is nearly 6 weeks after his last GI surgery when they found the hidden obstruction that miraculously had not perforated, and gave Samuel an ostomy to allow his intestines time to heal and return to their normal size.

As with any surgery (and every other day in the life of Samuel), there are many prayer requests!

  1. Today Samuel can only have clear liquids through his g-tube, so his belly will likely get to feeling pretty empty.  Please pray that this won't cause extra fussiness, and that he will have a great day leading up to surgery!
  2. Last week Samuel began having fairly frequent fevers again.  In anticipation of surgery they went ahead and started him on an antibiotic, even though they didn't find an actual infection.  Since starting the antibiotic on Saturday Samuel's fevers have disappeared and his secretions are clearing up!  Please pray that this course will completely clear out the Pseudomonas bacteria from his trach so it won't keep popping back up.  Pray that the fevers will stay away, and that this won't effect surgery in any way!
  3. We don't actually have the official word yet that Samuel will be going for surgery tomorrow.  He was put on tomorrow's schedule 2 weeks ago because things seemed to be progressing well, but the surgeon was out of town last week so we haven't heard whether he is pleased with the results of Samuel's contrast study and x-ray from last week.  Please pray that this surgery will happen in God's perfect timing!  From our human standpoint we are praying tomorrow is the day, because this ostomy care is no joke!
  4. Speaking of ostomy care...the skin around Samuel's ostomy has gradually gotten worse over the past 6 weeks.  It's nearly impossible (especially on a squirmy baby) to keep the stool from the ostomy from getting trapped between the skin and the bag, which just eats away at the skin.  But the more you take the bag off to clean the skin, the more irritated the skin can become.  Then you have to reapply the bag to the already irritated skin...The area around Samuel's ostomy has become very raw (I'll spare y'all a picture!).  Please pray that this area won't become infected, that it won't hinder surgery, and that it will heal up quickly after surgery!
  5. It has been nearly 4 months since Samuel's intestines last functioned completely normal.  Please pray that they will return to normal function immediately following surgery!  We are praying that Samuel will be able to return to full feeds quickly after surgery, and that there will be no complications!
Thank y'all for continuing to pray with us!  God has done great and marvelous things all along this journey, and we have come to trust Him more and more with each passing day.  We know that, no matter the outcome, we can continue to trust Him because He is using all of this for a greater purpose.  Samuel's story has spread further than we ever could have imagined, and God is using his life to touch more people than we could have dreamed.  We love hearing from y'all about how this journey has touched your life or someone else you know.  We are humbled and grateful that God chose us to be the parents of this sweet, special boy!  I often stare at Samuel David in awe of the fact that I am blessed to be his Mommy!

Surgery #5, here we come!

This is His story, and it is all for His glory!


  1. Praying that tomorrow's surgery is a go and that it is successful and your dirty diaper goal is achieved. Love you all. <3 Our thoughts are with you.

  2. I cried as I prayed, and I prayed as I cried. God bless all of you. This certainly has been a trying time, but I love your testimony through it all. May dirty diapers be headed your way, and a happy, healthy baby boy! No matter what, God will be glorified through it all. Many blessings to you!

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