Seton – seven weeks ago, you inhaled your first breath in this world.  In this short time, you’ve blessed, challenged, and changed countless hearts.  We look at your strength to find what we sometimes lack.  You are inspirational, and I know without doubt your impact will echo in fathoms.  We love you.

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Well, I jinxed it.  Not even twelve hours after posting last week, Seton’s tube clogged once again.  We took the all too familiar stroll down the road to our favorite hospital and had his life-supporting plastic appendage reinserted past his pylorus and into his small bowel where it should reside.  Home again, home again.  It was our quickest visit yet, and the tube has now been in for a week again.

We visited Dr. Habersang’s office on Monday.  It took our little boy six weeks to return to his birth weight, but within the previous ten days between doctor visits, he managed to pack on an additional 9 ounces.  Heh…amazing what happens when the feeding tube stays in long enough to…feed.  Seton was given a glowing report overall from his doctor.  He did increase Seton’s baclofen to compensate for his growth, and it has seemed to help.  His oxygen levels are doing quite well.  Our hope is by the next visit we might be able to take him off the oxygen machine.  Instead of weekly visits, our next appointment is a month out.  He has had a fair amount of congestion and secretion from his nose this week, but that from his mouth has become very infrequent.  Shawna and I continue to take all of these pieces as progressive movement and rejoice.

I’ve learned that dads make mistakes.  What was my mistake this week?  I watched my son’s circumcision – a vision I can’t erase.  I literally tasted blood as I sympathized with his screams.  Now I understand why it’s done as an infant.  Someone would have to put me in a straight jacket to perform that procedure on me today.

Beyond that, I don’t have much to write this week for the sake of not becoming a broken record.  We are still thankful for each day and each blessing.  We are still extremely tired.  We are still praying and believing for healing and wholeness in Seton’s body and life.

Zane

“Be strong and take heart, all you who hope in the Lord.”  Psalm 31:24

Seton’s sixth week of life with us was overall quiet and uneventful, and we are so grateful.  His feeding tube has stayed in for an entire week now, so thank God and thank each one of you for your prayers for that.  We hope with all we have the streak continues well into his future.  We did not meet with Dr. Habersang this week, so there are no major updates in that regard.  We have reduced his oxygen from one liter to one-quarter liter, and he continues to require less suction and swallows on his own more and more.  He has appeared slightly more spastic in the last several days, which we are guessing might be related to his growth and the need to increase his Baclofen dosage.  We will discuss this with the doctor on Monday.

As promised last week, here are some pictures from Seton’s one month photo session:

I’ve really struggled with what to write tonight.  Sometimes I feel like we’re living life through a bipolar perspective.  We can’t even attempt to count the times and ways we’ve been loved and blessed.  It really is uplifting and encouraging.  As the days continue to accumulate, we mark each a victory, but the weight of walking through this circumstance becomes cumbersome at times.  Physical and mental exhaustion try to root deeper, and I find myself less able to contest it.  Our well is running dry.

It would be quite easy for us to slip in our efforts or even to give up.  Believe me; I’ve entertained the notion on more than one occasion, but my heart and my spirit refuse.  Our God is bigger than anything we face, and we will not walk alone.  We have to believe it, we have to know it, and we have to carry it out.

Zane

"I consider that our present sufferings are not worth comparing to the glory that will be revealed to us." Romans 8:18

Our journey has now arrived at five weeks into the life of Seton Blaine.  It has been engulfed in such an array of thoughts, feelings, and emotions.  The lows are seemingly endless while they’re upon us, but reality proves they last no more than hours at a time.  The highs are of immeasurable blessing to us and our family.  The beginning of every day and the end of every day are truly gifts…because they keep occurring.  We wake up and greet our boy each morning, and we kiss him before bed each night.  Treasure.

I am not a receiver.  I don’t like taking things from others.  I’m being taught many lessons during this season of life, and one of them is receiving with grace.  In the past two months, we’ve been honored to receive so many things from so many people – encouragement, words, prayers, meals, and so on.  It has not ceased, but this week we received two special gifts. 

Our nephew attends Windsor Elementary and one of his friends has been praying for Seton, which in itself is a testimony for Seton’s life.  He came up with an idea to setup a lemonade stand at school and donate the proceeds toward Seton’s medical bills.  He took the idea to the principal, and what they ended up with is a “hat day” where students could bring their pocket change in exchange for wearing a hat all day.  So what was the result of this?  Cash, checks, and change totaling $1700.  We were totally blown away.  What an amazing boy, family, and school.  It’s not about the money for us, and it really wasn’t about the money for him.  It is a heart affected; a heart stewarding for another.  Wow, God.

Sunday morning, everyone got up and celebrated Seton passing the one month mark.  Joining us in that celebration was someone we’d briefly met before whose heart also reached out to love us in a big way.  David Williams came to our home and took hundreds upon hundreds of pictures of my boy.  His work is remarkable, and he has a truly talented eye for capturing spirit -  http://www.davidwilliamsphotography.org/  Shawna and I are really excited to see the results and are so thankful.  We’ll be sure to share some with all of you.  P.S.  David is one of five photographers who have extended their services to us, so we'll be blessed with more to come.

Seton is doing pretty well right now.  Despite visiting the hospital two more times in the past week for continued feeding tube snafus, he is progressing.  His home health nurses carry on commenting on his progress between their visits.  At Dr. Habersang’s office today we were smitten to find out that he has passed the 6 pound mark we’ve been striving for and has grown another inch to 21 total now.  Small, continual miracles adding to the sum.  His breathing treatments continue to prove effective for keeping his lungs clear and healthy, and while Seton is still not swallowing adequately, the frequency of swallowing increases. 

It is so easy for us to overlook the small things on a day-to-day basis, but we must remove ourselves far enough to see the overall.  We remain hopeful and tenaciously persuaded to fight.  Grace, mercy, and love have gone before us each step.  We are blessed by God and blessed by each of you.  Please continue to pray for Seton’s healing and our rest and strength.

Zane

“Lord, my God, I called to you for help, and you healed me.” Psalms 30:2

It’s been a week since our last installment, and Shawna let me know that I need to stop slacking and write another update for all of our wonderful followers.  So here goes…

Seton is four weeks old today.  What a blessing.  For someone not expected to live four days, four weeks is quite something.  Shawna and I are so fortunate to get to be his parents.  The last week has been pretty tough on our little man.  In less than two weeks our hospital tally now sits at four visits – three ER and one straight to Radiology.

His first two tubes were from last week, and both were displaced.  The third tube was in a great position and actually stayed in position. Then it clogged.  Someone throw us a bone here!  Tube number four was a doozy.  It took about six times going down before it was in position, and like clockwork, coiled in his stomach within 36 hours.  I count new grey hairs each morning in the mirror.

That brought us to yesterday’s excursion to the ER.  It began about 1 AM with Shawna and our home health nurse heading in for our “routine” tube replacement.  Little did we know this trip wouldn’t end until 4:30 PM the next afternoon, after they tried to admit us to pediatric ICU.  15 hours in the hospital and it was absolutely delightful. (Insert sarcasm here)  It was all attributed to poor communication.  Tube number five rests quietly were it’s supposed to be, and we pray like crazy it stays exactly where it is for a long time.

The really fun part of all these tubes is the blood that is spit up repeatedly for days after they are placed.  I guess on the upside, our little dude already has quite a wardrobe due to needing 10 clean outfits a day.  He’s a trooper and marches on every day, and he never even says a word about it! J

Seton’s visit with Dr. Habersang on Monday went pretty well.  His newest x-ray showed his lungs looked quite clear, which is awesome.  The breathing treatments – and some help from above – are really working to keep those lungs free and strong.  Everything outside of the tubes is checking out well.

His mom is bordering exhaustion, and I am not far behind.  When the day comes to an end, if this is our biggest complaint, we’re doing awfully well.  Emotionally, our extremes are lessened as time passes.  We are still not set into a solid routine, but I’m beginning to learn that is the new normal.  We are continuing to hope, pray, and believe for healing.  My brain is fairly fried at this point, so this post is a bit scattered and void of quality details, and I’m pretty sure I’m rambling a smidgen.  Please know we appreciate you all keeping up with us and sending your thoughts and prayers.

Zane

"You will not have to fight this battle.  Take up your positions; stand firm and see the deliverance the Lord will give you...do not be afraid; do not be discouraged.  Go out to face tomorrow, and the Lord will be with you." 2 Chronicles 17