Amy Bills and her son Oliver

Worry, anger, grief, joy, exhaustion, relief, bitterness, financial anxiety, physical pain. That sounds like a bad year by any standard. For a parent with a premature child in the Neonatal Intensive Care Unit, it’s not unheard of to experience all of those emotions in a single day.

The phrase “it takes a village” never meant so much to me as during the summer months of 2008 after the premature birth of my 28 1/2-week-old identical twin boys, Oliver and Avery, and the loss of Avery at two days old due to a congenital heart defect. My husband and I were lucky to have a close community of family and friends propping us up as we experienced all of these emotions and more. Because we were cared for, we could care for our children. But not everyone has that network. Volunteering through Hand to Hold to help prop up another NICU family allows me to bring the gift full circle.

OliverA NICU stay is often called a “roller coaster” and with good reason. During his nine-week stay in the NICU at St. David’s in central Austin, Oliver experienced a textbook series of medical challenges. We dealt with health and spiritual questions while grappling with the grief of losing Avery and the emotional and logistical needs of our older son, Logan. We also wanted to care for our family—after all, our parents had lost a grandson and our sisters a nephew.

It sounds odd to describe ourselves as “lucky” during this time, and yet as we leaned on the love and support (and cooking) of our friends, I couldn’t help but wonder, “What happens to parents who don’t have this network? Who do they talk to? Who listens?”

Even as Oliver grows into a fat, happy toddler, unidentifiable as a “preemie” except to those who know him or look closely enough to see the physical scars, we’ll never forget those harrowing months. Volunteering for Hand to Hold gives me the opportunity to answer the question “Who listens?” with a resounding “Me!” It’s not about doling out instructions or advice. It’s not about making decisions. It’s just about listening, validating and supporting parents during an unbelievably stressful time.

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Comments

  1. Amy,
    My daughter Katie (Walsh) sent this to me- no doubt you have heard from her that she, too, was a preemie at 31 weeks. It was such a frightening time for me. I lost my first baby, a son, at 21 weeks, too small to make it through a spontaneous abortion when my fluid became infected. I completely relate to all of the emotions you describe going through in a single day, plus fear compounded by the previous loss. I was new to Austin and had no one here to ‘listen’. The staff in the NICU at Brack were phenomenal during her 5 week stay. We were all so blessed that she grew fat and was so healthy. To this day, it still brings tears to my eyes when I see the faint scars on her heels from the blood taken twice a day. Happily, she has no memories of that and you would be hard pressed to know that she was born under 3 pounds, with hands the size of my thumbnail.

    What a wonderful resource you have in this organization. What a gift you are giving back.
    Your son is SO beautiful. If he brings you half the joy that Katie has brought to my life, well, that’s the greatest gift of all.

    Warmly,
    Cindy Goldman

  2. Melisa LaBerge says:

    Hello,
    I know exactly how this feels i had my daughter 02/28/2002 at seton medical center in austin she weighted 1 pound 1 oz and i was 28 weeks pregnant, i was having problems from day one and i continued to have ultrasounds every week not know what myself and my husband were about to go down which was the longest road every but here we are 8 years later and she is healthy with some minor issues but overall no one knows she was such a small preemie unless we tell them. At the time i had no idea what to expect and the only support i had was from my husband and both sides of the family and i was only able to be told by doctors and nurses what to expect i never had the chance to have someone who has actually experienced this explainw here we would understand. But all i can say it i am glad to know there is a great support now. I never knew how many babys were born so small until we had ours.

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