DAY 50 - 1st Birthday

I thought I’d write a blog post so no one forgets me J  Shawna has done a wonderful job of keeping things updated and driving the 50 days of prayer for Seton.  I, on the other hand, have fallen down on the job a bit as I cling to the merry-go-round of life, spinning faster and faster.

As I reflect on our life and journey over the past year, I am flooded with memories and emotion.  From Shawna and I standing in our living room sobbing after learning for the first time what we were about to face, to preparing the celebration for Seton’s first birthday party, we’ve experienced more of life than I ever thought possible.  I am overwhelmed.

So many instances, both good and bad, have shaped my heart, my personality, my existence.  These are some moments I want to share…and never forget:

Devastation of thinking life could end before it starts

Realizing every thought of control I had was a farce

Witnessing the miracle of birth and the look on my wife’s face as she saw our son for the first time

The overwhelming power of family, friends, and community

Inexpressible pain and fear as I woke so many mornings

Unmerited Grace and Mercy

Unconditional love

Cherishing moments holding my son, fiercely praying those opportunities wouldn’t cease

Bringing him home to live when we had been told he’d surely die

A new understanding of Mother’s Day and Father’s Day

Cooing

Graveyard nursery shifts

Family vacation at Dairy Queen and a nursing home

Knowing the best food at the hospital (and the names of most of the staff)

The firsts of Easter, Thanksgiving, and Christmas

Hanging out on the couch watching TV

Pictures, pictures, and more pictures – I don’t say cheese

The baby mullet that mom wants us to cut

The perfect symphony of simultaneously shooting snot-rockets from both nostrils while destroying a diaper

And to that effect, how much poop a baby makes (seriously - it’s just milk)

I could continue, but I won’t prolong this for you.

We still long for “normal” milestones of life like smiling, crawling, and playing, but our hope is securely 

placed, and we will persevere.  So much progress has been made, and there’s so much more to come.

I can’t say too much that I haven’t said before, but some things bear repeating.  We’re blessed.  We’re humbled.  We’re amazed.

Our family and friends tell us we have a testimony.  I’m not sure what to think about that, but I feel like we’re a privileged part of a living example of our God at work.  If anyone else sees it too, praise God.

Thank you for walking with us, thank you for praying for us, and thank you for loving us.

Attitude out of the gate

My monkey man today

Today's prayer request is for Seton's future and our future as a family. We look forward to many more years and birthdays to celebrate with our boy. He is such a joy and a blessing to us each and every day. 

- Zane

Give thanks to the Lord, for He is good; His love endures forever – Psalm 107:1

Day 49

LET THE CELEBREATIONS BEGIN!! Tomorrow my baby boy will be ONE! I can not believe it is here. Last year, Zane and I were finishing up things at work and packing. Then we headed to the hospital for a few days that I will never forget! From the first night there, Zane made fun of how many things I packed and then he had to sleep on the window seat… to the next night having a baby in the NICU… and the last night they let me stay and I left my baby at the hospital and cried all the way home. When we headed to the hospital that evening for the induction we did not know what our future held. We knew one thing… by the end of the following day we were going to have a baby boy. We did not know if we would have him on earth for a few minutes, hours, days or even years. He would be our son no matter where he was. He still did not have a name other than “Baby Boy Oliver”. We had no idea what kind of a journey God had for us, and we still don’t. God forgot to include us on the decisions when he was planning our life! J

One year later here we are with a son, Seton Blaine Oliver, who will be one tomorrow. God is so good and works in ways we could never imagine. How amazing is our LORD!

Seton did not have a great night last night but it wasn’t awful. He did wake up a few more times and did not get into a real deep sleep ever. He is still coughing a bit more than normal so we are going to up the breathing treatments to see if we can thin out some of his mucous and secretions for him.

We took Seton for a walk yesterday (with no pants) to absorb a little vitamin D and enjoy the warm sun, since it was 80 yesterday and it is going to SNOW today. We did forget to put on his sunglasses... 

Enjoying the sun on my legs! 

Laney was worn out and hopped up in Seton's Stroller to finish the walk. 

Today’s prayer may seem a little silly but it is something that I have been praying and thinking about for a few days… I pray that Seton has an interest in his birthday cake that he just tears into it (sorry Tiffani, I know you are working hard on his cakeJ) while we are taking pictures and singing ‘Happy Birthday’. That would just make my day!

I hope you all have a wonderful day!

~Shawna~

“In their hearts humans plan their course,

but the LORD establishes their steps.”

Proverbs 16:9

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 hope and a future.

Jeremiah 29:11

Day 48

Well Seton did not have a good night last night. He did not sleep much after 3am. He coughed every 15-30 minutes. He did pretty well from 9pm-3am, I think Zane only got up for him a couple of times. He has been coughing a lot more this morning also. He may be producing more secretions due to a teething or something.

The skin around his button is looking so much better! We know that he is not allergic to the button, but something on his old button was causing him problems, maybe it was too short and pinching his skin, maybe it just needed to be cleaned…who knows? We are going to pray today that his skin continues to heal and get better and that we never have to go through that again!

~Shawna~

Praise the LORD.

   How good it is to sing praises to our God,
   how pleasant and fitting to praise him!

 ² The LORD builds up Jerusalem;
   he gathers the exiles of Israel.
³ He heals the brokenhearted
   and binds up their wounds. 
⁴ He determines the number of the stars
   and calls them each by name.
⁵ Great is our Lord and mighty in power;
   his understanding has no limit.
⁶ The LORD sustains the humble
   but casts the wicked to the ground.

 ⁷ Sing to the LORD with grateful praise;
   make music to our God on the harp.

 ⁸ He covers the sky with clouds;
   he supplies the earth with rain
   and makes grass grow on the hills.
⁹ He provides food for the cattle
   and for the young ravens when they call.

 ¹⁰ His pleasure is not in the strength of the horse,
   nor his delight in the legs of the warrior;
¹¹ the LORD delights in those who fear him,
   who put their hope in his unfailing love.

Psalm 147:1-11

Day 47

Seton had a great night last night. He slept all night from 8:30pm – 6:30am then went right back to sleep until 8:30am…that’s pretty much 12 hours! This new medicine is helping a lot. We have to give it to him 2 times at night, 4 hours apart, I still have not decided on the best schedule for us to get up and give it to him...but we can work that out as we go since we are getting more sleep! I can definitely get up 2 times a night instead of 30 plus!

Today’s prayer request is for his congestion, coughing, and swallowing ability. He does really well some days and other days it seems just too much for him. He coughs continuously throughout the day and has all year…can you imagine coughing all day everyday for an entire year! The only way I can compare to what he goes through daily is like when you take a drink and swallow wrong and it makes you lose your breath and cough…that is what he does all day every day. I would love for his lungs and throat to be able to take a break. I pray for his tongue and throat to work properly so that he can have a permanent break from coughing.

~Shawna~

² Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.

Romans 12:2 (NIV)

Day 46

It is Monday and I am a little behind this morning. I have been snuggling with my boy all morning. He slept pretty well last night. We will continue that feeding and medicine schedule and see how it works for him. He could have just been really tired since he did not sleep much Saturday night and only took one 30 minute nap all day Sunday.

Button update: His skin is looking better around his button, it is still a little irritated looking but it is getting better again. J The skin under the button we taped to him never even turned red. So I am waiting to see what Dr. H has planned for our next step.

Today’s prayer request is for strength. Seton needs strength is several muscles to sit up, hold his head up and learn to walk and crawl.

Thank you for your prayers!

~Shawna~

The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.

            Psalm 28:7

Day 45 -- only 5 more to go

Seton had a fairly good day yesterday; he did not sleep much during the day and was never really fussy either. His button was looking amazing! I say "was" because last night when I cleaned it before bed it was red and bleeding AGAIN! The skin under the other button (the one we taped on to check for an allergy) looks normal, just a little red from the tape. So we left it on for another day and we will see what it looks like today. I hate that we can not figure out this silly button, but I have to say this is wwwaaayyy better than the ng tube he had before this one. We have not been to hospital in several months; I actually can’t remember the last time we were there. I guess it was in August for his g-button surgery.

Seton did not sleep well last night, even with his new medicine. So we will try something a little different with his medicine and food tonight. We did get a new feeding pump and it worked perfectly last night.

I feel like we are always going back to square one. Some days are great, and then it all goes down hill. Seton has improved so much over the past year, but like I said a few days ago…This is not God’s best for him. I know God has bigger plans for his life and he will not only be a little better, he will be completely healed.

I want to pray for all of these things we have been waiting on to show progress, his skin around his button, his sleeping patterns, and complete healing. I pray that he reaches square 2, then square 3, and so on…that he continues to get better daily and not worse or go back where we started.  And that we find answers and solutions to his button problem.

Thanks again for your prayers!

~Shawna~

I will leave you with one of my favorite verses.

¹¹ 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 hope and a future.

Jeremiah 29:11

Day 44

Good Saturday Morning!
Seton decided he wanted to be a good boy and sleep pretty well last night for his daddy. We started his new medicine that will help him relax more at night. It did help, 12:30am the 2nd dose helped until 5am. So we will have to play with a little and see what 2 times a night work best for him and us. We also have to plan his feelings around it because it has to be given on an empty stomach which means (for him no food 1.5 hours before and at least 0.5 hours after.
Our problem last night was his feeding pump...it kept beeping and showing error messages every time I turned it on. So I just gave up and went to bed. I assumed Seton would wake up if he got hungry and I guess he did not.
Today's prayer request is for something completely different...his veins. We still have to go back to the lab and have blood drawn again. We will wait a few days and probably go the week after next but I want to pray that his veins will expand do they are raiser to stick. Dr. H (jokingly) recommended some weight lifting for him because heavy weightlifters always have big veins from the repetitive resistance. Haha maybe I should go get Seton some weights today. :-)

I hope you all have a wonderful relaxing weekend!

~Shawna~

The Lord will rescue his servants;
no one who takes refuge in him will be condemned. (Psalm 34:22 NIV)

Day 43

In one week Seton Blaine Oliver will be ONE! God is awesome and has truly blessed us with this sweet boy!

We spent the morning at Dr. H’s office and we now have a new game plan for Seton’s button. The skin around his button no longer looked infected to Dr. H, only very irritated and broken down. We removed the current button (1.0 cm long) that he has and put in a different one, the new is a 0.5 cm longer. It is the old button (1.5 cm long) we had when his tummy was still swollen from his surgery.  We took the 1.0cm one out and cleaned it really well, then taped it to the right side of his tummy. We are going to check his skin for allergies to this type of plastic. There are several different brands of feeding buttons on the market. So for the next 1-3 days Seton’s will have 2 buttons on his tummy. I am supposed to remove the tape and check the site every 24 hours and note and changes in the skin. Since the new button is a little bit longer we are expecting it to leak more, hopefully not causing any more skin break down or irritation.

Then we discussed blood work… Seton’s Phenobarbital levels are still in a good range so we do not have to increase his dosage! Yippee! That made me very happy. They also tested his Vitamin D levels and they were very low. So we are starting him on some vitamin D drops for the next few months. Dr. H said that when your vitamin D is low it causes the muscles to be more spastic and have higher tone. Like I said yesterday, they did not get enough blood to do his allergy testing so we will go back in a week or 2 and get blood drawn for that testing.

We also discussed Seton’s lack of sleep over the past few weeks and he gave us a prescription for a medicine that slows down the sympathetic nervous system to help him relax and sleep better.

 Today's prayer request is for everything to work as Dr. H planned and that we find out the true cause of all his button trouble. 

Overall it was a good visit! I promised some pictures of his battle wounds from giving blood.

~Shawna~

Contend, LORD, with those who contend with me;
   fight against those who fight against me.
2 Take up shield and armor;
   arise and come to my aid.
3 Brandish spear and javelin
   against those who pursue me.
Say to me,
   “I am your salvation.”

Psalms 35:1

Day 42

We are going to pray for his skin around his button again. It started doing better last week but this week his skin turned really red and irritated around the button. Then yesterday it started bleeding. We are going to see Dr. Habersang first thing in the morning, so he can check his button and also look at his blood work results from yesterday.

Seton was such a big boy while they were attempting to draw his blood. He is so hard, even with the extra water we gave him. It still was not enough. They stuck him 4 times trying to find a good vein. They got 2 veins but did not get enough blood from either one of them to complete all the blood tests. They did however get enough to test his Phenobarbital levels, which Dr. H will look at tomorrow. We will have to go back in a few weeks to get the allergy testing done. Seton only cried one time when they stuck his foot and only fidgeted a few times trying to get his arm back.  Here are a few pictures of my BIG boy, trying to prove it anyway. 

waiting on a supervisor to come feel my veins

Mom, what are they doing to me?

relaxed after being stuck once 

 I will post pictures of his battle wounds tomorrow. 

~Shawna~

The LORD is good to those whose hope is in him, to the one who seeks him;

Lamentations 3:25