Saturday, August 9, 2014

... One More Thing

I am still leaving this blog intact as Roscoe's complete story, but if you'd like to continue following Roscoe's parents (and hopefully future siblings) then I'll continue keeping a blog at a new address:

I view this record of Roscoe's story as one of my life's greatest accomplishments, so I don't want to tarnish it with whatever else I might write as our family continues on. We look forward to the day when we hug Roscoe again, and the new blog with chronicle those steps we take to get there.

Wednesday, July 30, 2014

Final Words

This will be the final entry for Roscoe's story. It will serve as a summary of all of the information that you'll find here, if you choose to read through it. You may have reached this blog for any of the following reasons:
  • Your child is / will be premature and you are investigating what can happen as a result
  • You are considering an abortion and searched for pictures and videos of small babies
  • Your child has one of the conditions that my son struggled with (IUGR, PDA, tethered cord, pyloric stenosis, hypospadias, pulmonary hypertension, chronic lung disease / BPD, pulmonary vein stenosis)
  • You are searching for one of the medications that my son was receiving
For whatever reason you find yourself here, my hope is that those who stumble across this blog will be encouraged to read the complete story of my son and how his short life positively impacted people's spiritual outlook. As Roscoe's story unfolded, word about God's work in his life spread through friends and acquaintances to people around the world. Many people (including myself) have wondered why this all happened, and honestly I don't know. Perhaps God intended for you to read the story of my son and learn something that would make you live closer to God's own son.

If Roscoe's story has an impact on you, please email me (SWACKERL@GMAIL.COM) or post your thoughts on the Roscoe's Legacy page. Each time someone shares about my son, it prolongs his life just a little bit in my own mind.

In mid-2013 my wife, Alisha, and I went in for a 20-week ultrasound, where they identified my son as having IUGR and therefore being half the size (186g) he should have been. Based upon post-birth analysis of my wife's placenta, IUGR occurred because blood clots disabled 10-15% of the placenta, but there were possible other factors as well. We were scheduled for follow-up ultrasounds at 22, 23, 25, and 26 weeks (you can see his growth each week here). At the 26-week appointment, the doctor informed Alisha that she was having contractions, which had been occurring for several weeks and were now rather strong. Alisha was admitted to the hospital, stabilized, and monitored in the hospital for 3 weeks until she developed pre-eclampsia. My son Roscoe was born by C-section at 28.5 weeks with a weight of 530g (1lb 2.7oz). He was barely longer than a #2 pencil. A summary of those first months can be found here.

During each of the ultrasounds (a total of 6 including one in the hospital) they identified our son as being a girl, due to hypospadias, so for the first 2 weeks of his life we called him "Dottie". He was even registered legally as a female. However, genetic testing showed that he had male chromosomes and produced testosterone, so we changed his legal gender and name to "Roscoe".

Roscoe's life was plagued with a high heart rate, limited growth, and breathing struggles. Doctors discovered a heart murmur caused by PDA, which thankfully closed on its own without the need for surgery. He was kept in an incubator because he didn't have enough body fat to maintain his temperature. His breathing support consisted of a ventilator, high-frequency ventilator, and bubble CPAP. Later on, he progressed to a vapotherm and then nasal cannula while they tracked his CO2 numbers with blood tests. He had a feeding tube for most of his life so that they could supplement what he ate by mouth.

Roscoe was transported from Kaiser Roseville to UCSF to investigate a possible narrowing of the vessels between his lungs and heart. UCSF performed a cardiac catheterization to investigate Roscoe's narrowed pulmonary vessels and identify possible treatments. Roscoe had a dangerous combination of chronic lung disease and pulmonary vein stenosis, both of which caused backpressure on his heart called pulmonary hypertension. UCSF started Roscoe on bosentan and transported him back to Kaiser Roseville, where his pyloric stenosis was surgically repaired.

We spent one night at the hospital with Roscoe in our room when he was almost 6 months old in anticipation of taking him home. Sadly, his bosentan medication needed additional approval before that could happen and he never came home. We had his room prepared and were heartbroken. At the point he was ready to come home, he'd gotten down to 100mL/minute of oxygen through a nasal cannula but his CO2 number was still near 70. In attempts to lower his CO2 (which causes vessels to constrict), his breathing support was increased back to vapotherm and then bubble CPAP over the next 2 months.

Since Roscoe would be on long-term breathing support and needed additional nutrition, they performed a tracheostomy and gastrostomy. He contracted a cold around the same time as the surgeries, which sent him into a downward spiral that very nearly ended his life. These episodes agitated his pulmonary hypertension, so Roscoe was transported once again (this time by a midnight helicopter ride) to UCSF. My wife Alisha and I relocated to San Francisco for a month at the Ronald McDonald house. During this time of ups and downs, Roscoe had two cardiac catheterizations (one exploratory, one for stenting) and prepared for heart surgery to repair his narrowed pulmonary veins. Roscoe passed away peacefully due to a brain hemmorhage before the surgery ever occurred.

A previously unpublished video from his last day

We encourage you to read Roscoe's story in its entirety, but here are some of our favorite pictures:

Throughout the remainder of his story you'll find plenty of pictures, videos and spiritual insights from a dad who prayed like never before to save the life of his son. I wrote a blog entry nearly every day of Roscoe's life, so the entirety of his journey here on earth is captured on this blog. I encourage you to read, reflect, and enjoy my wonderful son with a view that centers on the beauty and complexity of God's creation and how he responds to prayer.

"The LORD gave, and the LORD has taken away;
blessed be the name of the LORD"
- Job 1:21

Tuesday, July 29, 2014

Apple Hill: The Prequel

Hollywood loves prequels. Roscoe's story has been a tearjerker full of plot twists, a charismatic hero, and comedic relief, so it is only fitting that his story end with a "prequel" view of what happened before the blog began. Alisha was rushed into the hospital after our ultrasound checkup on September 17th, 2013 and I consequently began this blog a few days later. However, something special occurred a few days prior on September 14th and it hasn't been fully revealed until now.

Alisha is a photographer ( who specializes in pictures of children and families. However, on September 14th she took her own maternity pictures at Apple Hill. Alisha has impressed me in many ways, but you won't find many women who take their own maternity pictures outside of a bathroom mirror. Since it was nearing fall weather and we were unsure when she'd be checked into the hospital, we drove up to Apple Hill early in the morning to catch the sunrise.

We had a few props with us, gathered some fallen apples, and picked out locations where we'd take her pictures. To get the camera settings correct for the lighting conditions, Alisha would have me stand in the spot where she planned to be so she'd have something to focus on. Of course I had to make myself an accurate of a representation of a pregnant woman:

Then she would switch spots with me and I'd snap the picture using the settings, position, and zoom distance that she'd decided upon:

The rest of her maternity pictures can be seen below. Her belly wasn't as big as most (she was 25.5 weeks at the time) but this was the best we could get of a skinny girl with a tiny baby. She was admitted to the hospital just 3 days later:

This day was the genesis of Roscoe's story. The tiny baby in her belly (at the time he was only 13.8oz) would go on to be born, grow, and live a triumphant life seen by people around the world before returning to God.

Tomorrow I will post my last blog entry, which will be a summarization of all that's happened for anyone who stumbles across this blog in the future. I will miss writing these blog posts, because I felt like I got to experience such a special situation from a perspective that no one else had, like a reporter who is trapped inside a bank while a robbery takes place.

I told Alisha last night that the journey of writing this story as it unfolded has been something that I enjoyed thoroughly and that I can never experience in the same way again. Even if we had a second baby with the exact same problems, it would not be the same. Roscoe was the right baby, given to the right parents, at the right time. We love him dearly (and always will) and I feel honored that God chose us to tell his story.

Sunday, July 27, 2014

Poem for Roscoe

Late tonight I received another poem for Roscoe, written by a church member in Covina, CA. Thank you to everyone for your outpouring of love in various forms for our son. We feel truly blessed.

Born so early and so small
To God did many make a call
To give you strength and to grow
Many prayers around the world did flow
We read and followed faithfully along
Saying with your parents is where you belong
We looked for updates everyday
Hearing about you and what your dad would say
So much news some bad and some good
New things to learn and be understood
New things you did made proud your mom and dad
Then hearing "The End" made everyone sad
There is a comfort in all this sadness
That one day we'll meet and all will be gladness
Prayers continue from all around the world
Prayers for comfort are being up hurled
We know you are smiling now with God
And your parents' faithfulness we applaud

- Laura Byrd

The Great Adventure

The poem below was written by one of Roscoe's caring friends on the day that he passed. She sent the poem to us, so I hope she doesn't mind that we shared it here for others to enjoy. She titled the poem, "The Great Adventure":

The Great Adventure

Once there was a little girl who gave her life to the Lord
She believed in Him, and couldn’t wait to venture round His world
God and she would speak each day of blessings, hopes, and dreams
And she loved her God—the two of them, they made an awesome team

This little girl, she had a skill of seeing beauty in the plain
And a little boy, he noticed this and wished he could be the same
So he told her that she had a mind unlike that of any other
He held her hand and gave a ring, and she soon became a mother

Her husband and her child made her hopes and dreams complete
She couldn’t wait to share adventures with two tiny perfect feet
Well her little boy had quite the adventure, but not the kind you’d think
We prayed to God, but her son’s short life was ending faster than a blink

Her husband gathered warriors who prayed for hours, day and night
And they tried to help their baby boy put up the biggest fight
One day the little girl called to God, with suffering and strife
And said “My God, he’s all I have. My baby is my life.”

She knew that God could save him, and still wishes that He had
After all, that boy—he was her life, and the loss still makes her sad
But she walked him to the gates of heaven instead of ventures round the world
And when they arrived, the little girl gave her life back to the Lord.

The little boy, he traveled from one father to THE Father
And never could have made it through without the courage of his mother
The little girl and little boy missed their son each and every day
But his life was not without tremendous purpose, everyone would say

And though she didn’t understand all the why’s, if’s, and’s, or but’s
She knew her God would still provide, and that she’d feel His love
The story did continue, though I’m not sure of its end
I do know that she didn’t break, she just learned how to bend.
- Elizabeth Nichols

Saturday, July 26, 2014

The Boy Who Never Grew Up

Roscoe will continue to grow with Alisha and I as life goes on. Each year that passes, we'll wonder what he would have done had he still been with us. Thankfully, I am able to see into Roscoe's future. We received more cards from Roscoe's favorite artist:

These pictures give us a glimpse into the boy that Roscoe would have become. If you haven't seen the other cards he sent us previously, they are shown below from the original blog post:

I enjoy seeing someone else's view of how Roscoe's life would have developed. Each of us have our own view of what that future looked like. On facebook, a mother mentioned that she imagined her children one day introducing her to their new friend who was named Roscoe. Another person imagined shaking the hand of a man in 20 years and having him introduce himself as Roscoe, having prayed for him until that day.

Roscoe will grow up in our minds. Alisha and I were recently wondering whether Roscoe lives on with the mind of a baby, or if in heaven he'll instantly comprehend things as an adult. Does he understand clearly all that has happened? Perhaps he'll mature as we grow older and be taught about righteousness by God himself.

However, there is a part of us that will hold Roscoe as the boy who never grew up. He never sinned, never saw heartbreak, never hurt anyone, and never made a mistake. Like another boy who never grew up (Peter Pan), our Roscoe will live on in Neverland. I'm not using "Neverland" as slang for "heaven", I'm talking about the actual Neverland. If you don't believe me, just look at the map and you'll see Roscoe's Roost (click if you haven't previously seen it) ...

Messages for Roscoe

One thing that I have loved about the journey of telling Roscoe's story is seeing how genuinely involved children become in the life of my child. Roscoe has received cards from children in the past when he was living:

Since Roscoe passed, I've heard of a few kids doing special things for him. His cousin, Lincoln, wanted to make arrows and shoot one up to Roscoe. His cousin, Javan, sent him this picture:

Then I also heard how kids at a birthday party in West Virginia wanted to tie a message to balloons and send them up to Roscoe:

These notes and stories really touch our hearts. If your kids would like to get a message to Roscoe, feel free to email me a picture of their card, pose, or any other message form (SWACKERL@GMAIL.COM). I will publish it here on this blog post. Let them know that God is reading the blog to Roscoe right now, and that soon Roscoe will be able to read it on his own.

Here are the additional pictures I've received since first posting the blog entry:
Alea, Oklahoma

Archer, Texas