We’ll keep things pretty brief tonight.  Seton is 11 weeks old today.  Thank you, Lord.

We were supposed to visit Dr. Habersang on Monday, but toward the end of last week, Seton’s congestion really seemed to be bothering him.  He was pretty fussy and appeared uncomfortable, so we paid a “sick” visit last Friday instead.  Other than sharing the same crud Shawna and I have had twice this month, his visit went pretty well.  He weighed 7 pounds 7.3 ounces and measured 22 inches.  His progress there is good, and we are continuing to increase his food intake slowly to accommodate the growth.  Even with the congestion, Seton’s oxygen saturation levels were good, and he is off his oxygen machine during the day.  Everyone breathes a little shallower at night, so it goes back on during that time.  His swallowing has slowed down a bit the past week or two with the added congestion, so Dr. Habersang is tentatively projecting July for the swallow study.  We were hoping for an opportunity sooner than that, but like nearly everything else in life, we aren’t in control, so we’ll put a smile on our faces and wait for July J

Monday morning Seton had a sneezing fit and out came his tube.  That is a record time of 21 days (even though it clogged three times during).  We sure won’t complain about that and hope the new one stays even longer.

There’s no real update for Shawna and me.  It’s been an extra tough week or two, and I’m really blessed to have a couple of good friends hear me out and go the extra way to encourage me.  So blessed.  We are doing our best to take each day as it comes and remember our hopes.  We’d appreciate your prayers for physical and emotional rest and for a renewed grace to face the difficult days.  Seton would appreciate your prayers for development, strength, and health.

Zane

(I need two this week)

“It is the Lord who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

“See, I am the Lord, the God of all flesh; is anything too hard for me?” Jeremiah 32:27

Today eclipses the ten-week mark for Seton Blaine.  For the past couple of weeks, Seton has made marked improvements in his growth and swallowing.  Late last week he decided to take a step backward.  He became fairly congested, and his breathing became more labored.  Some days this week he has done better and some worse, so we will continue to monitor until we meet with Dr. Habersang again next week. Using a borrowed scale, Shawna has roughly measured his weight at 7 pounds 11 ounces, and he is more than 22 inches tall.  Does anyone else find irony in referring to someone who has yet to stand as “tall?”  I ponder.

We received a call this week about Seton’s application for the Medically Dependent Children’s Program (MDCP), and he has been approved for assistance.  This will help greatly with his home health care needs and medical situation.  We are sincerely thankful for this, especially considering his coverage under private insurance ended last week.  It is one more burden removed from us.  In order to complete this process, a nursing home stay is required to further assess his level of necessary care.  The only facility we were able to use for this is in Hereford, so we loaded up all his equipment and things and made the voyage last night.  The stay requires two days, so we checked in at 10:30 pm and left about 12:30 am.  Yay, for red tape.  Our first family vacation on the books.  We commemorated the event by purchasing Blizzards from Dairy Queen.  What can I say?  I like to travel in style.

It is pretty safe to say we are out of crisis mode and into living the reality of our life.  It’s really a big thought.  Somehow I fooled myself into thinking it would be better or easier than it is most days.  How many days can you put that smile on your face and say all the positive things others like hearing?  It’s assuredly finite.  Then I realize how much of this circumstance I’m trying to carry on my own.  I’m frustrated with myself because I keep fighting for control of a situation that is absolutely uncontrollable – a glaring character flaw.  I’m stricken with guilt and selfishness for ignoring so many positive accomplishments and milestones; waking only to focus on the difficulty and struggles.

I know God’s got it.  From beginning to end, He’s got it.  I’m reminding myself through this right now that all I have to do is trust and believe in Him and renew my mind and my strength with His promises.  Promises of good and not evil.  Promises of a hope and future.  Our family and friends still rally around us, even though the “excitement” has worn thin and time moves on.  Thanks to you all.  Please continue prayers for Seton’s brain to fully develop and for the patience and grace we need as we wait and walk.

Zane

“Let us hold unswervingly to the hope we profess, for he who promised is faithful.”  Hebrews 10:23

I will start by saying I am not the gifted writer that Zane is, and I am not funny either. I have not written on our blog since the first post, exactly 3 months ago! Three months ago we started what seemed to be a terrifying journey. No one knew what God had in store for us. This precious gift that He gave us has blessed us in so many indescribable ways.

Seton Blaine Oliver- Monday was your 2 months birthday and today you are 9 weeks old! We have been through two months of dirty diapers, two months of late night cuddling, two months of life with a newborn, and two months of proving your doctors wrong! I love every minute of your life, and I am so blessed to be known as your momma! We love you very much and can not wait to watch you progress even more.

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These last two months have been wonderful. We have had eventful days - very eventful days - and even some slow days. Every day Seton shows progress that was never expected by our doctors. We do not go back to Dr. Habersang until May 23rd so we are not sure how much he has grown...although I have considered getting out the Wii fit to see what he weighs. We are slowly adjusting to being a family of 3; some days we are a family of 12 (with all our extra help). It truly takes a village to raise this child! Thank you so much to all our family that has spent many sleepless nights so Zane and I can get some sleep...we would not make it without your help. Even with the progress Seton has made, we still need 24 hour care.

This last weekend was very eventful in a good way. No hospital trips! We celebrated my first mother’s day this weekend which was great! My Aunt Krista and Uncle Jim came to town from Lousiana to meet Seton. We took Seton to church for the first time Saturday night. He did so well. He did not cry at all and the loud music did not bother him. Saturday after church we had a big cookout at my parents’ house with our family to celebrate Mother's Day. It was nice to get Seton out of the house to see some different scenery and introduce him to friends and family that have been praying for him, even before he was born.

On Sunday with the help of Zane's mom, sister, Gran, Aunt Dianne, my parents, and my Aunt Krista, we were able to cancel our nurse so she could spend Mother's Day with her family. We hung out and were lazy all day and Zane and I got a full night sleep! Like I said before it takes a village to raise this child!

Tonight, Seton’s feeding tube got clogged and we made another trip to BSA Radiology. They were successful in unclogging his tube this time, so we were thankful that he did not have to go through getting a new tube again. We decided to take him up to the NICU to say hello to the wonderful nurses that took care of us.  As we stood their talking with the nurses in the NICU we watched several parents scrubbing in to visit their baby. We saw a few parents that were there while we were, still hopeful to take their baby home. We are truly blessed to have only spent 2 weeks in the NICU; some of those parents have been there for 4 months.

FYI... His current (newly unclogged) feeding tube has been in for 10 days.

"Thanks be to God for his indescribable gift!" 2 Corinthians 9:15 

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