Stay Connected

Results 1 to 8 of 8

Thread: Manes, Alyna Sofia

  1. #1

    Post Manes, Alyna Sofia

    A year has come and gone. Our little Cherub is going on 15 months. She's a survivor and reminds us everyday. Almost 2 years ago, our prayers were answered and we were finally having the baby we prayed so much for. By the time I was 36 weeks pregnant, we were devastated to find out that our little angel had CDH. We were living in S. Korea while my husband fulfilled his military duties. So far from family and what is familiar. The language barrier was even more unbarring while medical staff tried to explain the issue to us.

    About a week later, my mother and sister would arrive. We did all we could to learn about CDH and find a hospital in S. Korea that would be able to take care of our baby. Between TriCARE (military medical insurance) and being in a foreign country, trying to get the hospital took some convincing. Getting military doctors to sign off on a referral was easier than expected.

    Once at Samsung Medical Center in Seoul, we were in good hands. I've never seen a medical facility work so efficiently. Take a number, get an MRI. Take a number, get blood test. Take a number, get a ultrasound. By the end of the day of my first examination, I'd already had several ultrasounds, blood tests, MRIs, and was scheduled for a C-section for 38th week of pregnancy.

    The medical staff at Samsung was amazing, always trying to make sure we understood what was happening with our daughter. Once she was born, she was immediately intubated and taken for examination. Tests and more tests done to determine the severity and her strength to endure surgery for repair.

    Sometimes we felt hopeless but prayed and prayed for her to recover and go home with us sooner than later. Ten days in the NICU and she'd even impressed her doctors, who had encountered CDH before. Finally she was home, off the feeding tube, off ventilators, off all machines and tubing. All she had for the next week was a bandage, covering her incisions from the laparoscopy surgery that repaired her diaphragm with only stitches.

    Now almost 15 months after her birth, all that remains are photos and memories of the horrible birth defect that turned our lives upside down. He scars are almost invisible, but we will always remember.

  2. #2
    Thank you for posting your journey with CDH. I am currently expecting our sweet girl who was diagnosed with CDH at our 20 week ultrasound. It's encouraging to hear stories like yours. We have educated ourselves well but are still fearful of the unknown once she gets here. We have our dr's all lined up and we will be induced at 39 weeks if I don't go into labor before then. God bless you and your family!

  3. #3
    Alyna is a precious miracle!! Thank you for sharing more of her journey with us....if I remember right, you are back in the states? Hope she has a great year being 1!!
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
    email: tmeats@cherubs-cdh.org

  4. #4
    How wonderful! It is amazing how we are on the other end of the world yet our stories can be so similar! Many prayers for continued good health!!!!
    Mom to Dakota Tenney- born 12-25-08 (RCDH). Diagnosed at 29 weeks. Born 7 weeks and 2 days early (32 weeks and 5 days). She is my Christmas gift and I am never giving her back. ECMO three days. Surgery on Day 13. Home on cannula oxygen 2-25-2009. Off oxygen 3-31-2009. No feeding tube yet *knock on wood*. Hard to feed and still a skinny little girl- but we are working on it!

  5. #5
    Quote Originally Posted by MSengsourya View Post
    Thank you for posting your journey with CDH. I am currently expecting our sweet girl who was diagnosed with CDH at our 20 week ultrasound. It's encouraging to hear stories like yours. We have educated ourselves well but are still fearful of the unknown once she gets here. We have our dr's all lined up and we will be induced at 39 weeks if I don't go into labor before then. God bless you and your family!
    Thank you for your kind words. I couldn't have done it without this organization and faith that God would see us through this tough journey. Sending you and your family many hugs and prayers. May you and your family turn to God to see you through the birth and recovery of your baby!

  6. #6
    Quote Originally Posted by Chris and TracyMeats View Post
    Alyna is a precious miracle!! Thank you for sharing more of her journey with us....if I remember right, you are back in the states? Hope she has a great year being 1!!
    Thanks so much Tracy! Yes, we are now living in Central Coast California. She is just full of life it makes everything just so wonderful!

  7. #7
    Quote Originally Posted by JenniferTenney View Post
    How wonderful! It is amazing how we are on the other end of the world yet our stories can be so similar! Many prayers for continued good health!!!!
    Thanks so much! I'm glad I was able to still connect with others from the US while overseas. Being away from family is hard, but almost unbearable when you go through such difficult times. God bless you and yours!

  8. #8
    Welcome to CHERUBS and thank you so much for sharing your story. May you all enjoy many years of continued good health.
    Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla ( , Chloe ( 6 ) & Elodie ( 3 )

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •