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

Roscoe's Legacy

Roscoe has exited this life and we are powerless to undo that change. Alisha and I are left with the choice of what to do in this situation. I read all of the blog comments, facebook posts, and email messages that I receive about how Roscoe has impacted people's lives. As a parent you never want to lose a child, but if you do it really softens the blow to know that there was meaning behind the loss. Roscoe didn't live long (9.5 months) and wasn't great in stature (23.5" tall if he were standing), but he's had a great impact on people's faith. His prayer map is filled with spiritual supporters around the world and the blog post about his last day of life has been viewed over 15,000 times. As Alisha and I weep, there are many around the world weeping with us (Romans 12:15).
NOTE: If you haven't yet taken the time, please add yourself to his prayer map. It is a great encouragement to us and we plan to print it out for his baby book. Over 750 markers have been added so far.

I hope that Roscoe has a continuing spiritual impact upon the world. Many people have said that by hearing Roscoe's story unfold, it taught them to pray a little more earnestly and believe a little more deeply. I hope that in this age of minuscule digital attention spans, Roscoe's impact does not fade quickly. If you take away anything from Roscoe's story please let it be the following:
  1. Never let an opportunity pass
    There are constant opportunities that float by without being seized. I thought that I'd lost all opportunities to say goodbye to Roscoe on June 14th when he was facing his end. God granted us another 38 precious days with Roscoe. Some were tumultuous and some were sublime, but in all of them we affirmed our love for Roscoe and kissed and hugged him as much as we were able. Never let the opportunity to show love to your children pass by. You never know what tomorrow may bring.
  2. Pray with meaning
    Roscoe gave adults and children a specific reason to pray. We heard from people all over the country that praying for Roscoe was something that united the church with a common petition. Now that he's gone, there are still other reasons to pray with fervor. Some reasons make us plead with God. Some reasons make us express our thankfulness. All of those reasons give us a purpose in speaking frequently, plainly, and honestly with God.
  3. Find good in every situation
    There were lots of things wrong in Roscoe's life. He was plagued with physical problems, tormented with needle pokes, struggled to breathe his entire life, and never got to experience a life without cords attached. Alisha and I were powerless to change the situation; we could only change our perception of it. Trying to find appreciation and enjoyment in small things kept us positive through murky waters. Roscoe continually found the strength to smile from ear-to-ear in dark circumstances. If you find yourself frustrated or let down by life, please learn from Roscoe's story. Change your focus to the good things you do have, rather than focusing on what's wrong or lacking. Roscoe didn't know what he lacked, he only knew what he had and what made him happy.
  4. Appreciate the little things
    Roscoe lived a very atypical life, so Alisha and I looked forward to many small things that often go unappreciated. We started to see great pleasure in being able to hold your baby without permission or in a room alone, seeing your child's face with nothing stuck to it, taking your infant on a walk outside, holding your baby without any wires attached, and being able to sit in a noise-free environment while your baby slept. Look for small blessings like these and enjoy them if they are granted to you.
Each time a parent hugs their child just a second longer, or tells them an extra time how much they love them, or prays with words more heartfelt, or finds a positive way to look at a negative situation, or appreciates a small experience with their child ... we feel that Roscoe's legacy will continue. Please give Roscoe's life meaning by letting his short life impact your own.

If you feel so inclined, please share how Roscoe has impacted you in the comments section below.
NOTE: We don't plan to have a funeral or memorial service for Roscoe. Very few of those who cared about him actually got to meet him in person (even some of his closest relatives didn't get the opportunity). I feel lucky that I got to spend just about every day of the past 9.5 months with such a special boy. We felt it would be most appropriate for the communal grieving process to happen online through this blog, since that's how most of you came to know and love him.

Friday, July 25, 2014

Our Little Clown

The last pictures we took of Roscoe were ones where we put a little clown nose on him. It was a nose that my mother bought us to entertain him with, but we thought it would be cute to put it onto him instead. It almost made his trach ties look like a clown's collar and bow tie:

First reaction to something on his nose, scrunching up his face

Wondering when we will take the nose off

Looking at us, wondering what is so funny

Tribute Video

This montage of snapshots from Roscoe's life was created by one of the blog readers within a few hours of his passing. For those who hadn't seen it on facebook yet, I wanted to post it here as well:

Why I Hate Tuesdays

Over the past year, I have really grown to hate Tuesdays. Many of Roscoe's surgeries and procedures happened to fall on Tuesdays. Also we learned about his fatal brain hemorrhage on a Tuesday, but those aren't the reasons why I hate Tuesdays. The reason I hate Tuesdays is because of fasting.

Our original 20-week ultrasound appointment was on August 5th, 2013. Since we learned of possible problems in that appointment, I have fasted every Tuesday* since by avoiding any form of food or non-water drink all day (at least 24 hours). I prayed and pleaded with God to give Roscoe any energy I would have received that day from food, to extend his life just that much longer. All told, I fasted for 53 or 54 days during this past year. That translates to over 100,000 calories or 28 pounds of fat. A few weeks I fasted twice if there was a big procedure, and once I fasted 3 days. One Friday I fasted for Phin. As every Tuesday drew nearer, I started to dread it. As each Tuesday night drew to a close, I felt relief that it wouldn't come for another six days.

My experience with fasting improved my ability to control myself in other areas, but my main focus was to show God how earnestly I wanted Roscoe to be saved. He knew how much I loved Roscoe, but maybe he just wanted me to prove it to myself. I don't know if my fasting had any impact on Roscoe's outcome, but I made a promise to God that as long as he kept Roscoe alive I'd continue fasting every Tuesday as long as he was in the hospital. When I started fasting in August, I thought I'd be done with it by December and Roscoe would come home, but God had other things in mind. The fasting stretched out through January, February, March, and then after April I started realizing I didn't know how long it would last.

I tried to keep my mind focused every Tuesday on an attitude of earnestness, dedication, and prayer. Sometimes my attitude wrongly became "If you do this for me, I'll keep fasting" which was really me attempting to manipulate God into saving my son. After fasting so much, I had to actively remind myself why I was doing it and keep the focus on Roscoe and prayer. I don't bring all of this up to draw attention to myself (Matthew 6:16-18). Mainly I want to give everyone a complete picture of how hard we tried to save Roscoe and perhaps why God let him live so long beyond September 17th, 2013. We did everything we could and we have no regrets about what else we could have done. No stone was left unturned.

Next Tuesday, I won't be fasting. Roscoe's last day of life was my last day fasting. It will be a strange feeling to eat normally, but it will be an even stranger feeling to not pray for my son's health or visit him in the hospital.

*Full disclosure: Some weeks we had a work event where they served food, so I'd fast on Mondays those weeks. Just in case anyone from work reads this and thinks I was bending the truth. :)