Wednesday, March 30, 2011

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.


"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

Saturday, March 26, 2011

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.


“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

Monday, March 21, 2011

It’s been a few days since we’ve talked.  Many things have happened and changed in those days.  Seton is now 11 days old, still stable, and doing pretty well.

When we left you last, we were torn with a decision to either leave his feeding tube through his nose and into the stomach (actually small intestine) or sending him into surgery to have a g-tube placed in his stomach.  Both paths have pros and cons and neither are necessarily “good” options.  After much thought and question, prayer and heartache, we opted to forego surgery at this time.  We have peace about that choice for now.

We again met with Dr. Habersang on Saturday and addressed numerous questions that were still on our plate and made sure he was okay with and in-line with our decision.  As previously noted, he is not only extremely intelligent and beyond capable to handle special needs but also compassionate and insightful on a personal level.  We are so blessed to be under his guidance.

Shawna and I began “rooming-in” today.  Seton is no longer in the NICU unit under the watchful eye of the doctors and nurses.  We are camped out in a room across the hall from the NICU; just the three of us.  He is still on a monitor the fine folks across the hall can view, but we are caring for him; a pseudo-home experience to help prepare us and allow us to attend to questions before leaving.  He will be going home with a feeding machine, suction machine, oxygen, and a nebulizer.

Medically speaking, Seton is being sent home to pass away.  Shawna and I feel differently.  We are taking him home to live – no matter the time frame.  We are still hoping and believing completely that he will get better and be healed and whole.  And we have peace about that as well.  We’d really appreciate all of you continuing to stand with us in that belief.

Seton needs 24/7 care and about 12 hours of home health care each day.  Expectedly, we are beginning what feels like a battle with insurance and SSI to provide the proper level of care he needs.  If you’re able to pull any strings here, we’d love a tug J

This has been a trail full of mountains and valleys.  Some days have been challenging on a level beyond comprehension, and some days have been serene and almost void of our reality.

Thanks for praying for us, thanks for supporting us, and thanks for following us.


“Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for him." The Lord is good to those whose hope is in him, to the one who seeks him.” Lamentations 3:21-25

Wednesday, March 16, 2011

Good morning, Seton Blaine.  You are one week old today.  You are defying our emotions, you are defying your doctors, and you’re changing peoples’ lives daily.  Your mom and I are so proud of you, and we love you more than we ever imagined.  We are praying for you constantly and believe that God is bigger than anything you face.  His timing is perfect – never early, never late.  You are daddy’s little soldier, and you keep fighting.

Yesterday, Seton was put back on oxygen.  His O2 saturation levels kept dropping, and he was visually struggling in many things he was trying to do.  After an X-ray, there’s thought that he is having some micro-aspirations. With some very mild assistance, he’s doing much better and is much more relaxed. His doctors and nurses have decided to do X-rays every other day to monitor his lungs and administer antibiotics if needed.  They have also placed his feeding tube past his stomach to further prevent reflux.  He’s still eating well.  We were also informed that Dr. Habersang will be our pediatrician when Seton is released from the hospital.  Answered prayer!

Shawna and I are doing okay right now.  We are trying to enjoy our time with our son and “let go and let God” every day.  Thank you for continuing to pray for Seton and for us.


"The thief comes only to steal, kill, and destroy.  I have come that they may have life, and have it to the full."  John 10:10

Monday, March 14, 2011

I realize this is long overdue, and for that, I apologize.  I thought our lives were crazy and hectic before – boy was I wrong.  Where do I start?  Maybe from the beginning…

Shawna was admitted to the hospital last Tuesday night (March 8).  The goal was to get situated and get her started with the cervidil to promote dilation and get things ready to induce labor Wednesday morning.  That process was fairly simple overall and ironically has been close to the most painful thing (physically) in this whole process for Shawna.  She was uncomfortable and a bit anxious that night and did not get any real sleep.  I, on the other hand, was privileged to be without cot or bed and slept on the window seat “bed.”  Man would I like to meet the person whom invented such bed for people no more than five and half foot tall…and sock him right in the nose.  I was fortunate to sleep about three to four hours.

Bright and early Wednesday morning (March 9), Dr. Carrasco came in and started checking Shawna’s progress.  She had only dilated to 2 cm by this time and our son was nowhere near the birth canal.  They began her pitocin drip, and we hung out and watched TV as family and friends gently trickled in and out throughout the morning.  It was about as pleasant as waiting can be.  Just before lunch, Dr. Carrasco had checked things again and really started leaning toward a c-section due to all of the excess fluid and potential for the umbilical cord prolapsing.  For many reasons, Shawna did not want a c-section, so we bought some more time and continued waiting.

By 2 pm Wednesday, c-section became the only realistic option.  Until now, reality wasn’t real.  Oxymoron, I know.  The gravity of this decision and the uncertainty of what we faced hit me like a Mack truck.  We prepared our minds and hearts as much as possible, said a prayer, and away we went.  By this point, we had a small army of followers outside who saw us into the operating room.  Shawna was wheeled back by a team of doctors and nurses and the NICU team joined as well.  Meanwhile, I’m stuck just outside the OR sitting on the “dad” chair feeling awfully anxious.  They called me in – game time.

I’m escorted in and shown where to sit.  But of course before sitting, I see my wife’s stomach split wide open with several hands doing work inside.  Umm, check please.  If it wasn’t real before, it certainly was then.  Within a matter of minutes, I was instructed to grab the camera.  With not a second to spare, I turn the video contraption on (note to self – use brand new camera before entering OR).  I captured my son being extracted from my wife’s stomach and his umbilical cord being snipped.  It was exactly 3 pm.  The first thing that crossed my mind was, “Should I really have eaten the cafeteria pizza at lunch?”  He was whisked around to the NICU table where they began cleaning and de-funking my child, whose name was still to be decided.

This, my friends, is where our somewhat light-hearted story makes a 90-degree turn into oncoming traffic - where we’ve since been clipped by every moving thing in sight.  You’re reading this now, so you’re clearly aware of the issues facing us before this day.  We knew problems were more than probable.  Seeing my son for the first time was simultaneously the most amazing and terrifying thing I’ve experienced.  From the eyebrows down, he is the most beautiful and perfect child we could expect.  From the eyebrows back, terror constricts our hearts and minds.  Please don’t mistake, he is still magnificently beautiful, but what we only knew as the word “microcephaly” illustrated itself on our miraculous life gift.

The issues with his head and brain stared straight at me.  It was something neither eyes nor heart can truly be prepared to witness.  To spare some time and detail, I’ll just say that his skull is somewhat sunken where it should protrude, and the skin/scalp on top of his head is wrinkled from not being filled properly.  It deeply hurt me.  Around the time it began sinking in, he was ready to be taken back to the NICU unit, and Shawna was still lying on the operating table being put back together.  I had to quickly make the decision to follow my son to NICU.  On a quick side note, I nearly stepped backward onto a table containing a little blue bucket.  What did said bucket contain?  My wife’s placenta and “stuff.”  Eww.

I spent 10-15 minutes in the NICU room before the neonatologist took me to the side and again had the discussion with me about care, intervention, and so on.  I asked to see Shawna, and as I was walked through the waiting area, I was greeted with what appeared to be 40-50 people anxiously awaiting news.  I couldn’t muster anything but silence and tears.  Our hopes and prayers had been built to such a level; I simply wasn’t able to maintain that level of expectation.  I was carrying something I’m not equipped to carry – man is not equipped to carry.  When I got to Shawna in recovery, she was pleasantly waiting (thank you drugs).  Our son officially became Seton Blaine Oliver as we talked.  I sat and talked with her and one of our wonderful nurses until she was cleared to go to her new room.  The rest of Wednesday really is a blur to me now.  It was filled with joy, tears, celebration, and consolation.

By Thursday morning (March 10), Seton was no longer on oxygen and breathing entirely on his own – something many doctors did not expect him to do.  Miracle.  He was taken back for an MRI that morning.  We spent the day checking on and feeding our boy, talking with guests, and helping Shawna recover from major surgery.  Seton was doing most everything a newborn is supposed to do except for swallowing.  Swallowing is tied for the most important thing a human should do, along with breathing.  This complication is still with us.  His risk of asphyxiation and/or aspiration is very high and dangerously life threatening.

Friday (March 11) proved to be an exceedingly difficult day.  Shawna was not yet producing much milk, and Seton was not reacting well to the formula he was eating.  Much of the day was spent watching him throw up repeatedly.  This day, we were also given the results of his MRI.  The long and the short are not really different than all we’ve received but now we have words to put with it – holoprosencephaly and lissencephaly.  As a reminder, we are not medical professionals.  Our vocabulary shouldn’t possess such words.

Now it’s Saturday (March 12).  Exhaustion is setting in for Shawna and me.  Overall the day was okay.  Shawna was gaining speed with her milk, and Seton Blaine was taking to it much better.  Our emotions have now been ripped apart and stitched back together, only to be ripped apart again.  The scab that won’t heal.  Our family and friends have absolutely poured themselves into us, and by God’s grace, we push through agony to enjoy our time with our son.

Sunday (March 13) was upon us.  We’re simply amazed at this point of the carefully constructed orchestration of people God has placed in front of our path.  It is the task no man is capable of completing.  Truly divine intervention.  We believe part of this is a pediatrician; Dr. Habersang.  He is the local guru of all things unique and special needs.  He so graciously donated his time to us and our family to review Seton’s history and condition and gave us his insight and medical opinion on diagnosis, treatment, and care.  We pray he will have room in his schedule and heart to take Seton as a patient.  During our discussion with him, we learned just how scary lissencephaly and its effects can be.  Uncontrollable seizures, Cerebral Palsy, and aspiration are some of the highlights.  His brain development is approximately 5% of normal.

Today (March 14).  Seton Blaine exploded his diaper all over his clothes and all over his night nurse before we arrived today.  That’s my boy.  He fed well yesterday and last night.  His morning feeding was cut short because he needed an empty stomach for the upper GI test this morning.  We are currently facing the decision to operate on Seton to have a G-tube placed in his stomach for feeding and a fundoplication to minimize regurgitation.  That procedure is provisionally scheduled for the beginning of next week.

Where does this leave us?  This is so much harder than we ever fathomed.  The hurt is indescribable.  It’s a lifestyle we didn’t imagine and don’t want – 16+ hours in the hospital every single day.  But we’ll do it everyday in perpetuity if that’s what is required.  Some days we start below 0 and work our way up to a 3 or 4.  Some days we are able to make it to a 6 or 7.  It is absolutely brutal.  So what gets us through?  God.  God’s grace and mercy to wake up the next day.  God through each one of you.  God through every care provider that surrounds Seton.

I wish I could name and number every person who has made an immeasurable difference in our lives during this.  All I can do is pray that your blessing to us is multiplied 1000 fold back to you.

What can you do for us now?  Pray.  Pray that Seton’s airway and throat are miraculously operated so he can swallow for nutrition and without fear of aspiration.  Pray that his entire brain miraculously grows, matures, and develops to a normal level.  Pray that Shawna and I have the wisdom and guidance to make the right decisions for our son’s life.  Pray that God touches the hand of every nurse, doctor, and surgeon that finds our boy.

I’ve told a few of you, and now I’ll tell all of you.  I’m not certain how the story ends.  Regardless of the outcome, if just one person is brought to God or experiences what His love is all about.  We would endure it again.  And I say this as tears stream down my face with a heart holding excruciating pain.


"'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me." 2 Corinthians 12:9

The view looking in...

I'm slow on my job lately, so Shawna's sister, Tiffani, wrote a post for us to catch you all up a bit.  I am writing a comprehensive post and hope to have it up later tonight.  Thank you, Tiffani.

What a week!  Shawna and Zane are so blessed by all of your comments, hospital visits and most of all your many, many prayers.  I don’t have the eloquence that Zane has for words or the occasional humor he likes to throw in, but we wanted to update you on our weekend and give you more specific prayer requests.  I’ll do the best I can.   

Shawna is getting stronger everyday, and Saturday night, she was released from the hospital.  Not many things are as hard as leaving your baby in the NICU as you go home.  Shawna and Zane have been so strong and make a great team together fighting for their baby boy. 

The MRI done Thursday, shows Seton has Holoprosencephaly and Lissencephaly both brain defects and the severity is moderate.  Also, the final test from the amniocentesis came back normal confirming defects are not genetic.  Seton remains in the NICU, and he loves being held by mommy and daddy, grandparents, aunts, and sweet nurses.  Seton only has a feeding tube now.  He had some problems with formula during his initial feedings, but now he is doing better on Shawna’s milk.  He still doesn’t know how to swallow, but a speech therapist will begin working with him on that, and a physical therapist has started working with his sweet little tight fisted hands, arms and legs.  Shawna and Zane and Seton’s grandparents met with a pediatrician today and he gave them a couple of options to think about and pray over.  Please pray for wisdom in Shawna and Zane and all doctors and staff as they work together to do what is best for Seton Blaine Oliver.  Also, pray for God’s healing hands on this special boy.

A note to my nephew Seton…
God’s words below have been on my heart since I first learned of you in your mommy’s tummy.  God has healed your heart, sweet boy and I believe Our God is not finished with you yet.  Continuously praying for you . . . Love you, Aunt Tiffani

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you a hope and a future.”  Jeremiah 29:11

Thursday, March 10, 2011

The past two days have been very crazy and tremendously difficult. It's really hard for me to gather all my thoughts right now, so I will keep this one short and simple and write a more detailed post when possible.

Seton Blaine Oliver joined our family on March 9, 2011 at 3 pm. He weighed 6.07 pounds and measured 18 inches in length. (pronounced seat-uhn)

At this point, he is camped out in NICU. He is stable and breathing completely on his own. Thank you God for the miracle of his life.

He is not swallowing currently, so he has a feeding tube as they try to get him progressing. The size of his head is quite severe at this point and unknown in effect.

Thank you all for your prayers and support, and please continue to stand with us for his total and complete healing.


Tuesday, March 8, 2011

Hope comes in the morning
Carried in apprehension
Its grace satisfaction

Hope comes in the morning
Entrenched in unknown
Its mercy out grown

Hope comes in the morning
Shadows lurk with fright
Its power casts down in light

Hope comes in the morning
Suffocated in delusion
Its glory the conclusion

Hope comes in the morning
And brings a new day
No matter the outcome
No matter the way
It brings new life
Life here to stay

Thursday, March 3, 2011

It’s a funny feeling.  Every time the phone rings, our hearts sink a little with anticipation of what we’re about to hear.  It’s like bracing for impact, then avoiding the collision each time.  This morning, our fetal maternal’s office called again.  The lab is on the ball and has completed the testing for Miller Dieker syndrome.  Negative.  Again – no signs of abnormality.  The dialogue of answered prayer then ensues.
The day is drawing near.  After much thought, discussion, and prayer we have decided to induce labor next Wednesday, March 9th.  We feel this will be the best option for care with so many variables and uncertainties that stand before us.  The proper staff will be in place and ready to address anything presented.
Shawna and I are both excited and apprehensive at the same time.  Confirmation after confirmation gives us peace that everything is going to be all right. Indulge me for a minute -
What we do not know is if everything is okay from day one or month one or year one.  So, we prepare our hearts for any situation and believe.  Where one of our journeys ends, the other begins, and we face life and run with it.
“Rejoice in hope, be patient in tribulation, be constant in prayer.” Romans 12:12