Rudy’s Journey (so far…)

 

 

It was a surprise to find out in the Spring of 2008 that we were pregnant with a fourth child, but that turned out to be nothing in comparison to the shock that hit us during a 27-week ultrasound in August when our baby was diagnosed with Hypoplastic Left Heart Syndrome (HLHS).

In plain English, HLHS means that the left side of his heart is underdeveloped and non-functioning.  It would take a series of three risky surgeries between birth and about 4 years of age to get his little half-heart configured to give him a chance of survival.

Rudy was born at UCLA Mattel Children’s Hospital on October 1, 2008 and had his first surgery, the Norwood, when he was five days old.  While optimal timelines project about a month of hospitalized recovery, Rudy battled numerous setbacks that kept him in the ICU.  His battles with chylothorax (lymphatic fluid in the chest cavity), trying to breathe on his own, and process food properly saw him return to the operating room four additional times (thoracic duct ligation, pleurodesis, tracheostomy placement, Nissen fundoplication/G-tube placement).

We were finally able to bring Rudy home to Santa Barbara for the first time on April 7, 2009.  A C-diff infection took us back to the PICU less than two weeks later so our “permanent” homecoming happened on May 7, 2009.  At seven months old, he was already past the typical window for the second surgery (the Glenn usually happens at 4-6 months) but the team wanted him to recover and gain strength.  The doctors would have counted it a victory to have him home for six weeks so there is amazement that he has been home for nearly 7  years!

While the original hope and plan was that Rudy would be able to go back for the Glenn surgery, unfortunately this was ruled out by a heart catheterization at UCLA on October 21st, 2010.  The team had been hoping for his high pulmonary (lung) pressures to drop so that his body would be able to survive the circulatory re-configuration that needs to happen.  Unfortunately none of the drug or therapeutic interventions attempted proved effective after 18 months, leaving the course of action from here very unclear.  In short, Rudy’s lungs wouldn’t allow him to survive the heart surgery he needs for his long-term survival.  For the time being he was stable so, even if it’s against the odds, we prayed for his status to change and new courses of action to become possible.  To everyone’s excitement, his next annual cath in September of 2011 showed some signs of improvement–Rudy is still not a candidate for surgery, but the fact that his pulmonary pressures dropped some indicates that there is progress.  On May 31, 2013, Rudy had his first consultation with the heart transplant team at Mattel Children’s Hospital/UCLA.  Although Rudy is not considered a candidate for a heart transplant at this time, he has an appointment at the heart clinic every 6 months for monitoring.

Rudy has been able to make slow and steady progress developmentally during this extended time at home, but even more important, he has been able to receive huge doses of love from our family, church and community.  In the fall of 2011, he started school in a county special ed program and is now attending a local elementary school enjoying a fun weekly schedule of school and PT/OT therapy.  His whole journey is a compounding of miracles:  from his 7-month fight to get out of the hospital, to his little half-heart carrying him longer and through more complications than most thought possible, to the way he greets life with such exuberance, determination and joy.

This unexpected journey has been one of terror and beauty like we never imagined and we’ve found this blog to be very helpful for us in keeping people abreast of treatment details and goings-on in our family.  We also find writing to be therapeutic, as this process includes so many significant and loaded moments to let pass without some reflection.  We make no guarantee of objectivity or rationality, but are so grateful for the many people who read and pray.  God is so good to see that we don’t have to walk through this alone.

Thanks for checking on us,

Rolf and Trish

24 Responses to “Rudy’s Journey (so far…)”

  1. Steve Wilson Says:

    Thank you both for creating this web site! And thank you for sharing your journey with family, friends and others who will be blessed, inspired and encouraged by your walk down this special path! To God be the glory!

    Love you guys!

  2. marlene bergman Says:

    I am Bonnie Steven’s aunt.She shared her burden for you all while visiting here in summer. Just wanted you to know that Canadians are praying for you also. PLEASE could we have photos on your site? Names and ages of other children would help also.
    My web site has DAILY DEVOTIONALS that might encourage. http://www.poeticpen.org
    We will be in CA in November. Perhaps will have privilege of meeting you all then.
    Rejoicing in advance for miracles ahead! Hugs. Auntie Mar.

    PS. IDEA- Perhaps God will lay on the heart of a couple of SR. Citizen to pick up ministry of taking your son to his soccer games this season.
    Bonus, fringe benefit= friendship ministry among parents while waiting.

  3. Amanda Polenick & Robert de Rojas Says:

    You are all in our thoughts and prayers! We will be thinking about you and cheering on the little guy.

    Love,
    Amanda Polenick & Robert de Rojas (Teresa’s brother and *almost* sister-in-law)

  4. Diana Savage Says:

    Congratulations on your beautiful baby boy.
    I have been praying for him every since I found out about him from Michael & Tricia.
    Just know we are keeping all of you in our prayers. Keep the faith…
    God is so good!
    Love, Diana & Glenn Savage

  5. Kim Daus-Edwards Says:

    I know how helpful it is to have people write comments on the blog for our daughter, Rebecca, so just wanted to encourage you both here. We are living in two realities–the one where God heals and will heal and has healed; and the one where he has not chosen to heal yet. I understand this tension. Rebecca is scheduled for open heart surgery in January–she will be four months old. I am praying for you all as you also live in this tension between two realities, and for Rudi as I write this. Kim and Kevin Edwards

  6. Krista Stuerman Says:

    Wow…Santa Ynez must be Mars as I had no idea you were all doing thru all this. Shawn and Benjamin and I will certainly dedicate our prayer time to you and your family who we love! I check Greg Lawler’s daily pictures and noticed Olivia…and Greg included a link to your blog. God’s richest blessings to you. Krista & Shawn

  7. Jose and Patty de Rojas Says:

    We continue to pray for Rudy and all of you. May God bless all of you.

  8. Carrie Says:

    I found your blog on another website and reading it brought back so many memories. Our 17 month old son has HLHS and struggled through most of his first year. As a parent who knows the inside of the ICU too well, you and Rudy are in my prayers. Good luck and best wishes!

  9. Sharon (Lyle) Randles Says:

    I just spent the last 2 hours reading through this blog. I ran into Rolf and Bob Drummond in the UCLA Dining Commons the morning that Rudy was born but thought I was told that a missionary friend of theirs was having this baby with HLHS. I feel terrible that I misunderstood and have not been available to help during your amazing journey. As I told Bob and Rolf that day I am working at UCLA now. My office number is 310 825-0014 and is located in the 200 Medical Plaza building. I look into the Dining area from my department so am so close. I will come by tomorrow afternoon and start helping in any way you need…..

  10. Joann Says:

    I am a friend of Lynn Green’s and she told me about the Blog this eve. I’ve spent the last 1-2 hrs reading and catching up on your life. Wow… thank you for the Blog as it has provided me with a much needed reality check. May you con’t to be comforted by Our Precious Heavenly Father. I will bring you all before Him in my prayers.

    I’ve been at CA for 7 years so it’s possible that we’ve actually met.

    Blessings on you all.

    Fellow Christ Follower,

    Joann Saraceno

  11. Nancy Peck Says:

    Dear Rolf & Trish –I am a member of Covenant Presbyterian Church & have been praying for you all since we first heard about Rudy & his diagnosis through Grace & Marlin. Learned of this site from them only recently & gradually have been taking time to read all your communications. What a beautiful testimony your whole family is to the Loving Grace of God and how firmly He is in
    Control. Your regular notes are an inspiration to me. Little Rudy is such a fighter. Go Rudy! Keep on keeping on! I am praying that the “tubation processess” will soon be a thing of the past. I also pray for that Marvellous Staff at Mattel Children’s. Since I cannot hug Rudy in person I send my hugs & love to him and each of the 5 of you. — “Auntie Nancy” or “Grandma Peck” PS –I am checking the e-mail, but you only need to respond if you have time.
    (as a new person to this technology, am so amazed at it all)

  12. Molly Strattman Hershberger Says:

    Hi Trish,
    Ann shared your story with me. I have laughed and cried through all of your entries. I sat next to my son’s incubator for 12 weeks – no where near what you have been through, but reading your entries brought back memories.
    Please know that you and your beautiful family are in my prayers.
    Much love to you!
    Molly

    • Kevin Smith Says:

      Molly
      Just checking to see if this is you,It has to be. Kevin Smith from Syracuse here. Hope you and your family are doing well. Gina and I have been married 27 years and have 2 girls age 19 and 14. Life has been great to me and blessed me with Gina. I have been with the Indiana State Police for 25 years and am a Detective. We live in Angola Indiana. We have been spending time with Pat and Lisa Hare who live in Elkhart Indiana. They are well. Pat and I are still best friends.
      Let me know how you’re doing, Take care,
      Kevin

  13. Deb Swirczynski Says:

    Dear Trish and family,
    I had the privilege of working with you several years ago in my capacity at the National Center for Fathering. Although I never had the honor of meeting you face to face, you provided some of your beautiful jewelry for us at a Father~Daughter Summit one year. Although I no longer work for NCF, I am still in close contact with many of the folks there — specifically your wonderful brother Steve. He indeed is one awesome dude. I first got to know Steve while we taught Sunday School together at Covenant Chapel. Since that time, I have grown to love Steve and Michelle and all their kids. I know Jonathan and Michael the best — and just love watching their energy and excitement!! I see that your kids all have the same light of Jesus shining through their eyes and faces. What a precious family – all of you!

    Thank you so much for taking so much time to update us all on your journey — for letting us feel you pain, experience your heartaches, soar joyfully with you because of the love and mercy of our Lord and Saviour Jesus Christ. Thank you for allowing us the honor and privilege of praying for you and your family, to encourage you, to stand by you and we watch God work His miracles. Thank you for letting us be part of your community.

    Hebrews 10:23-25
    Let us hold unswervingly to the hope we profess, for he who promised is faithful. And let us consider how we may spur one another on toward love and good deeds. Let us not give up meeting together, as some are in the habit of doing, but let us encourage one another—and all the more as you see the Day approaching.

    Love and prayers.
    Deb Swirczynski

  14. The Bagdasarians Says:

    Hi Geyling Family
    Wishing you all the best for Rudy’s next surgery. He has proven to be one strong fighter. MIke and I truly salute your family. the Lord just steps in when life seems a bit tilted. We’ve all relearned one of life’s great lessons by simply walking with all of you the past few months. How to deal with challenge and uncharted waters. Thank you.
    Much love and many prayers,
    Betty and Michael Bagdasarian

  15. Carlin Says:

    Hello family,
    Just checking in on the baby and the family, glad we havent seen you at UCLA but I miss you and think about Rudy often:) Also, I just wanted to let you know that I really envy and pursue a relationship like you two have, always loving and caring about each other and your children. I hope that my husband and I can love as deeply as you two do.
    Carlin

  16. Paul Gray Says:

    Rolf and Trish

    It was a pleasure to meet you the other day. I have not been able to stop thinking about y’all. I am so glad to have been a part of the gift giving that we as a company were able to do. I am keeping Rudy in my prayers and I know he will be fine. He is so handsome! I would love to be on your email list with updates on how Rudy is doing. Hope to hear from you soon.

    Paul Gray

  17. Zeba Shameem Says:

    The Rudster looks so cute in his Halloween costume!!!! My has he grown!! Just wanted to say hello Rolf, Trish and family.

  18. Marcia Treat Says:

    Hi Trish,
    Our ladies at Tauy Baptist Church have been making Rudy Rolls from the leftover fabrics from our RagDolls2Love project. I thought I had your address so I could send our first 2 dozen rolls to you, but now can’t find it. Could you send it to me? Thanks
    Marcia Treat

  19. Esther Glick Says:

    Dear Freinds,
    I found your blog from another HLHS bloglist. I so much enjoyed reading through some of your journey with Rudy. What a precious boy he is! i feel an attachment to him because many things are similiar to our journey with our sweet son Jadrian who was born Jan 24, 2009, also w/ HLHS. Jadrian had a stroke after his first surgery and is extremly delayed in every way. He still cannot sit by himself at almost 2 yrs old. I can so relate to feeling overwhelmed with trying to teach them to eat by mouth. I know it seems small in comparison to heart surgeries, but right now it looks like a Mt. Everest to cross! I am currently blending whole foods to feed him through his G tube. he has a G/J.
    I was so encouraged to hear of your faith in God and how he is sustaining your family and marriage. Our testimony is the same, without Him I dont know how we could have gone through this very difficult journey.
    I truly wish you the best. I will add Rudy to my prayers.
    Heart hugs((())))) from one heart mommy to another. I know hoe exhausting this journey can be…just keep on going! Your reward is coming1 And our heart sons are so blessed to be in our loving care, they deserve the best!
    Love, Esther

  20. halle peters Says:

    after I read this It made me cry. Rudy has had a bit of a adventure and I hope many more to come.I will pray for rudy and your family. Just that god can give you strength and guidence .

  21. Konda Cobb & John Cioma Says:

    You all touched our heart when we met Rudy and your family at the carousel during your visit at GKTW:-) We are indeed following his recovery thanks to this web site. What a magical smile & wonderful little boy he is. All of you projected such positive energy and care for each other and it was uplifting for John and I. We both keep the “Thank You Package” with Rudy’s picture on our desks as a reminder that strength comes in many ways and is often contained in small packages. Our prayers and will to recover are with youl
    God Bless~ Konda Cobb & John Cioma

  22. Konda Cobb Says:

    We just wanted you to know that we continue to check up on Rudy and your family:-) Thank you for the lovely pictures and updates that allow us far away to keep in touch~ Warm regards to all! Konda Cobb & John Cioma (GKTW sends their Love)

  23. Sonal Says:

    Miss you guys!!! Rudy looks amazing.

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