Friday, July 27, 2018

No Happiness or Luck Here

"Happiness and Luck"

This phrase is etched into one of the bricks in the courtyard of the hospital.  How grateful I am that we don't depend on these 2 things!  If happiness was our goal in life, these past 18 months would have broken us.  It would be impossible to remain happy all the time during the heartache we have experienced and along the long medical journey that we are on.  If we were dependent on luck, Seth, Samuel, and I may be considered some of the unluckiest!

But instead of these unreliable, emotional things, God promises joy in place of happiness!  He promises hope and a future with Him, rather than relying on luck for our fortunes!  Praise God for these gifts!

There are many days when I don't feel the slightest bit happy - days when I can't even pretend to smile - days when I have a painful lump in my throat and choke back tears constantly.  But joy?  The joy that God gives is always with us.  It's the reason that Seth and I have found ways to laugh during some of the most painful of moments.  Joy is what allows us to see and be grateful for the blessings in the midst of the storm.  We may not be on a journey that we ever hoped for, but God has been faithful to provide us with joy!
"And do not be grieved, for the joy of the Lord is your strength."
Nehemiah 8:10b
We are not dependent on luck because God has ordained every moment of our story!  He is intricately involved, and is using all of it for a purpose!
"For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope."
Jeremiah 29:11
So instead of "happiness and luck", today I am thankful for the JOY and HOPE that God gives!


The end of last week turned out to be rather eventful for Samuel.  He just likes to keep us on our toes!
Last Thursday was the first day in almost 2 weeks that he didn't have a fever!  We were so excited to see Samuel feeling so much better!  But around here it seems that as soon as one thing resolves, something else pops up.
That night, after a great day, Seth and I noticed that Samuel's tunneled central line in his chest (the one they were planning to send us home with back before they realized Samuel's belly was fixable - the one that was supposed to last long-term) was leaking.  They took an x-ray and saw that it was no longer central, and had slipped completely out of the artery.  They decided that it would be best to still have central access, but instead of doing another tunneled line (since Samuel won't be on long-term TPN anymore!) they would just give him another PICC.  They stuck him for an IV just to get through the night, then Friday morning we had to send Samuel off for another PICC procedure.
But before we could do that, we noticed when we came in on Friday that Samuel had a rash up the right side of his body. Large red spots that were hard to the touch and painful for Samuel.  In the moment, it again felt like everything was against us, like Samuel just can't catch a break...
But God is continues to show us grace!
Not only did the procedure on Friday go well, but by Saturday night the rash (that none of the doctors could identify) was beginning to disappear!  Samuel remained fever-free all through the weekend and the first part of this week, and we saw so many smiles during that time and shared so many cuddles!

But then yesterday (Thursday) Samuel had another fever, and today he has been running high as well.  After a week of no fevers, we hoped he was in the clear, but now we're left wondering again.
One day at a time!

It was fun to be able to dress Samuel during the week that he was fever-free!
Seth and I have gotten to take over a lot of Samuel's care over the past 3 weeks, including giving meds through his g-tube! We are THRILLED to be able to do this after having to sit by and watch for so long!
5 months old!  Samuel has grown so much.  He is almost 12 pounds, he LOVES to sit up, and he enjoys staring at colorful things!

Prayer Requests:

  • Right now they are planning for the reanastomosis to happen the week after next, as long as Samuel is fever-free and still doing well with feeds.  At that time they will also make a decision about whether to take out Samuel's gallbladder during that surgery, since right now it has a higher chance of infection.  Please pray for wisdom in these decisions and in the timing of the surgery!
  • Samuel's sodium levels were dangerously low at the beginning of this week as a result of making the switch from TPN to breastmilk/formula.  They have been giving him lots of sodium supplements to bring his levels up but, while his levels are finally back in a good range for now, these supplements have been upsetting his stomach.  Please pray that Samuel's body will be able to maintain sodium levels soon, despite all the diuretics he's on, without the need for supplements!
  • Please continue praying for wisdom as the doctors decide on when Samuel's next heart surgery needs to happen.
  • Please pray that Samuel won't be plagued by fevers.
  • My parents and two younger brothers, as well as Seth's parents, have all made the trip out to Delaware over the past week!  We have also been reunited recently with friends passing through the area!  We are grateful for visitors so far from home!
  • Samuel is receiving his goal amount for his continuous feeds!  He is now off TPN and lipids for the first time ever!
  • 5 Months - TODAY.  5 months with our precious boy!  I am overwhelmed.  5 months ago, as I was realizing that labor wasn't going to stop this time, I remember saying to Seth through tears "he's coming, but it's going to be okay."  We had no idea if he would live beyond minutes or hours, but I felt peace in that moment - peace that God had hand-picked that time for Samuel's birth.  There were no guarantees going into that day...Each day with Samuel is such a gift, and we will never take these moments for granted!
  • Samuel does so well with his therapy!  He can now roll onto his sides on his own, and really enjoys when we read books to him!  On his good days, he also likes to smile when we make silly faces.  He is developing a personality of his own, and we are so grateful that we get to share these moments with him!
This is His story, and it is all for His glory!

1 comment:

  1. Thanks for the great post. It reminded me of this article which I saw today. May God encourage you all today.


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