Hello, again.  Today marks eight weeks of life for Seton.  It has been the roller coaster of a lifetime which words can’t accurately describe.  We have experienced the array from devastation to God-designed miracle.  From tears of utter despair and misery to moments of unmerited bliss and heaven, we’ve walked it.  Do we wish things were different sometimes?  Yes.  Is God’s plan and power still in full control?  Yes.

Seton continues to grow and improve each week, and there are no major updates to speak of right now.  His tube did clog again this week, but at least we got a solid 10 days from this one.  We’re now pursuing an aggressive flushing schedule to keep that thing clear!

The speech therapist came for her first therapy session this morning and was at a loss for what she could do to help him improve on his swallowing. He was already swallowing all by himself this morning, so she sat and watched him move his head and swallow his saliva when he needed. He has also begun to take his pacifier for a few minutes at a time, which will only improve his ability to feed when we are able to do the swallow study. 

I committed a major blunder last week and forgot to let you all be a part of Seton’s first Easter.  He got to make his first trip to Coco and Papa’s house to enjoy family time.  So here are a few pictures from his inaugural Easter and maiden voyage out of the house (non-hospital related).  It was a complete coincedence that we found nearly-identical shirts :)

Zane

"A righteous man may have many troubles, but the Lord delivers him from them all"  Proverbs 34:19

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

Seton – you are three weeks old today, and what a three weeks it has been.  Your mom and I are glad to have you home.  We were really scared to bring you home, but it’s definitely where you belong.  It is so amazing to spend time with you and watch as people around you continue to be changed simply because you are God’s miracle.  We are so thankful for you and love you more every day.

Shortly after my last post, about 8 pm Saturday night, Shawna and I decided to mosey down to that little place inside BSA called the ER.  Yep, Seton managed to completely displace his feeding tube from his body.  All in all, it’s not a major emergency or problem, but we were less than excited about taking a two week old baby into the ER with whomever and/or whatever might be lurking around him.  They were sensitive to our situation with him and got us into a room quickly and the whole process was complete right at two hours.  I am the lucky guy who has visited the ER many, many times and typically budget at least 6 hours of time – we felt fortunate.

What would happen just two days later?  That’s right kids.  It happened again.  This time it was morning and during the week, so the procedure was a bit easier.  An order was sent to the radiology department and we were taken back to an x-ray room to have the tube placed and checked.  Two hours, done and done.  Can you hot glue a tube to a kid’s face so it doesn’t move??  Joke.

Backtracking just a bit, we had our first real office visit with Dr. Habersang Monday morning.  Quite routine and uneventful, for which we are thankful.  He slightly altered his breathing treatment and that was about it.  We’ll go back again next Monday.  Seton is still stable and overall seems pretty comfortable.  He has been sleeping pretty well and has required less suction the last couple of days.  He is getting lots of love, attention, and care.  We are very grateful for all of those things.  Our family and friends deserve immense praise for sacrificing sleep, time, work, and life for us.

Shawna and I are slowly getting more adjusted to home life and working hard to establish some routines and normalcy in our days.  It’s tough sometimes and is definitely going to take some time to get most things figured out.  There are still moments in time, and even days, where we are exhausted and frustrated and low on hope.  Then I look back two weeks at the condition of our lives and hearts at that point…and rejoice.  We are so much further and farther today than we were then.  Those were truly the days I wasn’t sure I would survive.  The memory is strong, but the pain is distant.  I guess that’s the beauty of grace.  Even when it is not seen, it’s still there, and it makes the next day easier.

I pray the “comfort” we are establishing isn’t setting us up for a fall.  My natural self is still battling anxiety and fear of unknown days and outcomes, but my spirit wakes up hopeful each day.  Our physical eyes don’t see much progress or change, but we know without a doubt our God is more than capable.  We continually renew our minds for healing and hope for Seton.

Zane

"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up." Galatians 6:9

We’re home, and our son is now 17 days old.  Today is our third complete day home with Seton.  He was discharged from the hospital late Wednesday afternoon.  It has been both a blessing and a burden at the same time.  We are so fortunate to bring him home and get to spend time with him as we please.  We also have to organize some sort of routine for his care.

It’s all quite overwhelming.  We understand kids entail a great deal of attention and care, especially when they are infants.  Even knowing in advance he has unique needs, we under estimated what home life would be like.  As I mentioned before, Seton has a continually running food pump, oxygen, a nebulizer, and a suction machine.  For some silly reason, he has not yet learned how to operate all of that on his own.  Although he has been receiving 12 hours of home health care each day, it’s still a chore to watch him and perform all duties which are necessary.

His first two days at home were long and tiring, but they were good days.  We felt like he enjoyed being home, and we were definitely more comfortable at home.  Today on the other hand has been a challenge.  He decided to start spitting up in the past 24 hours, both secretions and milk, which solicits the question – when food doesn’t go into the stomach, how is it spit up?  Our nurse made a call to Dr. Habersang’s answering service.  Dr. Habersang isn’t on-call this weekend, so a Resident on-call returns the message…and has to call someone else for advice.  Grrr.  Our first in office visit with Dr. Habersang is Monday morning, so we hope to get some better clarity on this.

The nature of our experience has truly taught us how to live for each day and count each day as a blessing.  It is something I don’t think either of us have really done or had to do in life, but we thank God every morning and carry forward.  It’s an interesting paradox in thought - so blessed to have this child; so engulfed and unsure of tomorrow.

Shawna and I are still praying and still believing.  If Seton could swallow, he wouldn’t need any equipment to live, which again reverts back to his brain condition.  So please pray with us about those specific issues.  Thank you.

Zane

“Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”  Isaiah 40:30-31