Wednesday, May 16, 2018

His Eye is on the Sparrow... Even in Delaware!

I haven't given a detailed update on Samuel recently because, honestly, there is no update. We are just about in the same place as we were almost 4 weeks ago...
Samuel's GI tract has continued to be silent since his G-tube surgery. They have tried small trickle feeds off and on over the past 4 weeks, but have had to shut them off every time due to an increased girth, milk backing up, and still no stool...It has been 4 weeks since Samuel had a dirty diaper. I never thought I would pray so hard for a diaper!  But that's what we need.
They have done several tests on Samuel during this time, and everything seemed to come back normal, until the most recent biopsy. There was something a little different about his biopsy, but they weren't able to diagnose what. They sent it off to another lab on the other side of the county to try to get a diagnosis, and possibly give a direction on treatment for Samuel. So far the doctors have been stumped as to why Samuel seemed to tolerate full feeds for almost 2 weeks before surgery, and now has not been able to tolerate any feeds. We are praying that this biopsy may reveal some answers, and we are praying for God to provide healing!

Even though the doctors are at a loss, we know that God is not perplexed by any of this. We have every confidence that He can heal Samuel in an instant! It is so reassuring knowing that we have full access to the Throne of the One who knows the answer to the very mysteries that leave us dumbfounded and confused. There is no need to worry!
Look at the birds of the air; they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they?
Matthew 6:26
Are not two sparrows sold for a penny? And not one of them will fall to the ground apart from your Father. But even the hairs of your head are all numbered. Fear not, therefore; you are of more value than many sparrows.
Matthew 10: 29-31
I have been reminded lately that God cares about every part - every little detail - of His creation. He cares about even the littlest sparrow, which may seem to have no worth to us. If God cares about such a small creature, how much more does He care for each one of us? As the old song goes....

Why should I feel discouraged, why should the shadows come,
Why should my heart be lonely, and long for heav'n and home,
When Jesus is my portion? My constant Friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I'm happy, I sing because I'm free,
For His eye is on the sparrow, and I know He watches me.

"Let not your heart be troubled," His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I'm happy, I sing because I'm free,
For His eye is on the sparrow, and I know He watches me.

Whenever I am tempted, whenever clouds arise,
When songs give place to sighing, when hope within me dies,
I draw the closer to Him, from care He sets me free;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I'm happy, I sing because I'm free,
For His eye is on the sparrow, and I know He watches me.

So we will keep trusting. We will keep waiting. We will refrain from sitting in discouragement. Because we know that whatever happens, God means it for our good and His glory.
And we know that for those who love God all things work together for good, for those who are called according to His purpose.
Romans 8:28

Here are some specific prayer requests:

  • GI tract - Pray that God will restart Samuel's stomach and intestines! They have tried several medications and other methods, but nothing has worked yet. The only thing indicating that there may be some progress is that he went from having no bowel sounds after surgery, to now having some bowel sounds - still not back to what they were before surgery, though. Please pray that this will not be a long-term issue for Samuel.
  • Feeds - Pray that Samuel will be able to tolerate feeds again soon! This, of course, is dependent on his GI tract working. With IV nutrition, Samuel cannot grow as quickly as he would if he were getting milk. Also, long-term IV nutrition can cause problems with the liver. 
  • Lungs - Pray that Samuel's lungs will not lose ground during this time, but that God will actually use this time to further heal his lungs! Because Samuel's intestines and stomach are distended, they are pushing up on his lungs. Samuel already has a small thoracic cavity that crowds his lungs, but now his lungs are really competing for room. Instead of being at the stage of prepping for extubation, the doctors have actually gone up on the ventilator settings during this time because Samuel was having to breathe rather fast to compensate for the decreased air-capacity due to overcrowding.
  • Sedation - Pray that Samuel's body will continue to do well as he comes off sedation, and that the doctors will be able to find the right balance of sedation while he is still intubated! Samuel is so close to being off narcotics! We are praying for his withdrawal symptoms to remain minimal. He is still on a few other sedation meds, and the doctors are having to find a balance of weaning him off, but not weaning him too much while still intubated.
  • Breathing tube - The breathing tube that goes down to Samuel's lungs, through his nose, is a source of irritation for him. He often gets upset because of it, and we can't blame him! The doctors were all hopeful that he would be off the vent by now, but because of the GI setback we don't have any kind of timeline for when that might happen now. Since Samuel is now having a lot more awake time, and is more wiggly, they are having to re-tape the tube at least every-other day. Pray that the tube will remain in place for as long as needed, and there won't be any accidental extubations!
  • Heart - Samuel's heart, which was such a big concern before he was even born, is functioning well!  Samuel's recovery from his heart surgery was pretty textbook, and everything seems to be functioning well right now!
  • Holding - Because we have been here so long (7 weeks!) and there is no longer a timeline for getting Samuel off the vent, the team here has become more open to allowing us hold Samuel!  It still hasn't happened much, but Seth and I have both been able to hold Samuel twice now since being here in Delaware! Samuel LOVES being in our arms. It always calms him and is a much-needed bonding time for our hearts.
  • Eyes - With the decreases in sedation, Samuel has more awake periods and is more alert! He loves to stare into our eyes, and to look at the light coming in from the window! We enjoy reading books and singing to him, and we have found out that he is a little ticklish! Seeing his face so happy and content as he looks at us with wide eyes - I can't tell you what that does for us!
  • Encouragement - We have received so many encouraging emails and letters. We have heard from so many people who are passing along Samuel's story. So many people who are praying for us. We have even had some visitors in Deleware! We are so grateful for all of this!
Please drop us a note at
We would love to hear from each of you!

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

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