Luke Timothy’s Story

September 27th, 2010 by Kathryn

Unlike many NEC babies, Luke Timothy was considered full-term when he was born on September 18, 2009, at 36 weeks, 3 days. But, due to growth restriction in utero (IUGR), he was a tiny 3lbs. 9oz.

The neonatologists kept telling us that he was at risk of developing NEC, but with each passing day, his chances were lowered. On day eight, he had difficulty tolerating his feeds and x-rays confirmed he had gas in his bowel. We held off feeds for 24 hours and began a cocktail of antibiotics. When we reintroduced feeds he did beautifully…and then 12 hours later he turned septic, stopped breathing and had to be resuscitated. At nine days old, he was rushed to Dell Children’s and underwent emergency surgery a few hours later. Our surgeon told us he wasn’t sure what he would find when he opened Luke’s belly, but if we didn’t do something, it was likely Luke’s bowel would perforate and his chances of living dropped dramatically. Luke lost more than 16cm of small bowel and his appendix. Sending him to surgery was the most difficult moment of my life as a mother. No life experience prepares you for that complete and total surrender.

That first week, seeing him intubated, not being able to hold him, watching him fight the infection – it was all excruciatingly hard. During that week, we also learned that Luke’s kidneys were small, he had two holes in his heart, bilateral arachnoid cysts on his brain and it was likely he had a tethered spinal cord. Talk about information overload!

Two weeks following his surgery, we reintroduced feeds. He threw them all up within six hours. So, we waiting another 24 hours and tried again. The NEC came back. We were devastated. We waited yet another week before introducing feeds. That first feeding was filled with a football stadium full of worry. Slowly. Cautiously. We introduced one ml at a time.

After 44 days, we left the NICU with our precious miracle in our arms. Since then, Luke has endured two more bowel surgeries as a direct result of NEC and spine surgery, as well. At nine months, he is a dainty 13 pounds, but he is a fighter. And a complete and total miracle. The baby no one thought would leave the hospital, did. I am humbled as I read the stories of each of these babies who lived, and those who died, from NEC. It is the third ring of hell, but it also allowed me to love Luke and our other four children on a deeper level than I thought possible.

7 responses to “Luke Timothy’s Story”

  1. Elaine says:

    Hi Kathyrn,
    I just wanted to see if you could let us know how Luke is doing today. We hope he is healthy well.
    Elaine

  2. Kathryn says:

    Elaine, thank you for asking! Luke just turned 14 months and is doing very well. He’s slightly delayed in gross motor – but he’s doing beautifully in 2x week physical therapy. He is eating well and gaining weight, slightly slower than we’d like, but he continues to make progress. Right now, he has no long-term issues like dumping/short bowel or malabsorption issues. We are very thankful for that. Overall, he is a happy, healthy, thriving baby.

  3. Elaine says:

    Thank-you for letting us know Kathryn, it makes us thankful for him too. Please keep the story updated on him…he can give many hopes for others. Take care.

  4. Christine says:

    Just wondering if anyone’s baby has had to have a intestinal,liver,pancreas transplant due to nec. My neice has just been listed and she is 11 mths old.

  5. Kathryn says:

    I have not heard of transplants due to NEC. But, I am positive there is another mom out there who has. One outstanding resource we have in Austin is http://www.handtohold.org. It’s an organization that pairs seasoned NICU parents with new NICU parents, as well as providing support for those who have lost a baby or have a child with special needs. They are based here, but the website is an awesome place for information and connecting to people who have similar stories. You can also find them on facebook (of course!) and twitter (ATX_handtohold). May your neice and her family find the support they need as they endure yet another obstacle. NEC is so hard.

  6. Elaine says:

    We are going to work on creating a forum to help answering questions like this going forward.

  7. Kathryn says:

    Luke is now 2 years and 6 months. While he still struggles with eating – mostly due to sensory issues – I am happy to say he is doing beautifully. He attends therapy 3x week (OT and ST) and it helps tremendously. Every time I learn more about NEC I am thankful for the progress he has made. It is truly miraculous.

Leave a Reply

Your email address will not be published. Required fields are marked *


*