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


  1. Thank you for sharing Roscoe’s Story with the world. You invited us into your life and we will forever love this little boy and the gift of light he brought to everyone that read and prayed. He may not be here physically but he will forever live on in our hearts; his story will never end because he has impacted people all over the world who will carry him with them always. Only God knows why he was put here on this earth to struggle every day but he remained happy and joyful until the very end and now rejoices with his Father, awaiting the day he will be rejoined with his parents in heaven and be able to thank you for the love and care you provided to him each day of his precious life! I will continue to pray for peace and understanding for your family and all those who loved him. Blessed be the Lord!

    P.S.(I will miss your blog posts. You are an excellent story teller!

  2. Forever in our hearts Roscoe !
    I now don't let the little moments get away without embracing them . I am thankful God blessed us with you . And even though it wasn't for very long ,; It was worth every moment . Now I & Papa have two things to look forward to Heaven. Your Safe and your well and I know your Happy . Forever my love Precious Grandson .

  3. I can't get enough of that big smile! Thank you SO much for sharing his life with us & for demonstrating yours and Alisha's amazing faith! SO jealous that Grandpa Briggs gets to hold him before I do! Imagine the fun they are having!! I love you three VERY much!!!

  4. Shaun you did a wonderful job writing that made us feel as though we were with you every step of the way. God wanted the world to see him through your family's story and it has effected us in numerous ways that we will never forget. You have honored Him greatly.
    I am so thankful that we were able to hear Roscoe's voice one more time! Just as the children's screams powered the city of Monstropolis, Roscoe's smiles could power up the world!

  5. I will miss your posts! Thank you for sharing the life of Roscoe, I will be forever touched by him.

  6. Thank you Shaun & Alisha for sharing. Our prayers will always include both of you. God Bless.

  7. I hate knowing this is the last blog post. I understand it, but it just makes it feel more real that Roscoe is gone.
    I don't know what I am supposed to check every morning, afternoon, and night now. (And maybe every hour or two in between.)
    I am so thankful that I was able to be there for a little bit and hold him and put him to sleep and kiss his sweet little head.
    That video is precious.
    I love you three!

  8. Thank you so much for sharing Roscoe's incredible story with us. I, like many others, have shed tears with each post, praying my heart out that God would heal him here on Earth. Even though I know his story isn't over, I am not ready to say goodbye. I am so grateful for this blog that I can re-read and celebrate the life and the wonderful family Roscoe had.

    Dear Roscoe,
    Thank you for making the world a better place with your beautiful smile. Thank you for reminding me what it means to take joy in the little things and to have courage in the face of incredible odds. Thank you for reminding me to pray and to have complete faith in God. I have been changed by having known you and I love you.

  9. I have read all the precious and loving words. All the world can be forever changed and hopefully stronger. Your Mother and I waited to hear your encouraging hope and were praying with you and for Alisha and Roscoe too. My best to you both in the coming days and years. Hope to talk to you soon. :):):)

  10. I will miss all three of you. I have come to anticipate reading the daily post, and even have a favorites tab titled "Roscoe". I will continue to pray for your peace and comfort, and that God will bless your life richly, as he already has by giving you time with that precious boy, even though it was short. Thank you SO much for sharing your lives with us, and blessing OUR lives with what could have been a very private journey. I'm sure it wasn't always easy to share your most personal battle, but thank you for sharing your faith and letting us be prayer warriors with you.

  11. He had such a beautiful life! I'm in tears again, looking over the pictures and enjoying the video. That is not to make you feel bad but to know that people all over share a small part of your grief and your delight in the little lad. Love you all!

  12. I'm really going to miss this blog, Shaun; you've done such a wonderful job. As I scroll through the pictures, I both smiled and teared up. The video is absolutely precious. I just love and adore his little face. He was filled with such personality and happiness. I have no doubt in my mind that he would have had your sense of humor, Alisha's creativity, and both of your level of dedication to the Lord. I love you guys.

  13. Shaun, I remember reading things you wrote as a kid and telling you that you needed to write, that you had a gift. Your response was something like, "Ya, right! I only do it because I have to for school." Neither of us could have imagined that your gift would be used to bless so many lives. Through your words, and Alisha's wonderful pictures, Roscoe's legacy will never be lost. And yours and Alisha's love and faith continue to shine. Thank you for sharing your precious son with us in ways we couldn't have seen without your words. Love you three so much! Auntie M