Sunday, March 4, 2018

Life on the Outside

Everything has been a whirlwind since Tuesday, when our lives changed forever.  Our emotions have been all over the place.  It is so easy to go from feeling hopeful to hopeless in just a short amount of time.  There have been many positives and answered prayers since we got to the NICU, but there have also been many hard moments.

The most special moment has definitely been when Seth and I were able to hold Samuel for the first time!  I was able to hold him for about an hour on Friday, and Seth was able to hold him on Saturday!  This was an answered prayer that our hearts needed.

There were no drastic changes to Samuel's diagnosis from what we knew before he was born.  His lungs are struggling to develop because they are crowded in his narrow chest.  However, we are praising God that they were strong enough to sustain him during his first few minutes of life, and that they were strong enough to let out a few little cries before they put him on the ventilator!

Samuel's Hypoplastic Left Heart Syndrome is a major concern.  The surgery they typically do for his heart condition is one that would turn his heart into a single pumping chamber.  However, this requires a strong set of lungs because they would then have the responsibility of pulling in all of the deoxygenated blood.  This poses a problem in Samuel's case, because his Skeletal Dysplasia has somewhat restricted the growth of his lungs due to his narrow ribcage.  The cardiologists want to wait for the results from the genetic testing to come back, which will take about 3 weeks, before they make a final decision about the surgery.  They are hoping the results will be able to give them some more information as far as what can be expected for Samuel's development.  This will also allow Samuel's lungs to have 3 more weeks to develop before facing surgery.  When he was born they immediately started him on a heart medication that should give him the 3 weeks they need to be able to wait on the test results.

On Thursday night, Samuel became very agitated and upset, which caused his oxygen levels to quickly plummet.  Five nurses rushed to his side, but it took a while to get him stabilized again.  It was such a scary moment, and I realized just how quickly we could lose our son.  Samuel had several more of those episodes throughout the night, and again on Friday and Saturday.  We are praying for peace and comfort for sweet Samuel.

On Thursday they put Samuel under a bili light because his levels were a little high, but by Saturday his levels had dropped enough that he no longer needed it!

Samuel David is rocking the shades!
We got to hold Samuel for the first time! (See pictures above)

While the x-rays have confirmed that Samuel's bones are short, the doctors said that they are strong, and not brittle!

There are so many things to be thankful for.  We have seen so many answered prayers already.  We know that each moment with Samuel is such a gift, and we are soaking them all in!  But please pray for Seth and I, as this journey is more painful at times than we ever could have imagined.  We are trusting God to give us the strength that we need.

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


  1. Hannah, Seth & precious Samuel, we haven’t had the opportunity to meet yet at Fellowship Bible Church, Springdale but we’ve been praying daily for you all! We are so thankful for the blessing you have been to us in your honesty & your faith. Thank you for the updates on the blog! We’re loving the pictures & will continue to intercede for you all! God’s blessings, Gayla & Ron Ellenbarger

  2. Sending love and prayers. Love the photos of you and Seth holding Samuel at last! <3

  3. Thinking about you all often. I started following your story on Kindara. My son had several CHDs. Here for support along the way. xoxo Chelsea


2 BIG Updates!!!

It has been a long time coming, but we are back! Back in the blogging world. Back to sharing our story in order that God may be glorifie...