I responded.

Thank you for taking time to view our website.  My name is Beth Vannoy, and I am the founder of Minutes Matter. My family's personal experience with MCADD was originally my inspiration for forming this organization.  Let me share with you our story....

Our journey began on October 28 of 2011.  This is the day that I found out that I was expecting our second son, Alec Hudson Vannoy.  My pregnancy was full of false alarms.  I began having contractions at about 25 weeks, while I was on a business trip in Chicago.  I was in and out of the hospital too many times to count.  Finally, with an overnight hospital admission at about 30 weeks, the contractions were stopped.  Stopped so well, that I had to be induced to deliver on Wednesday, June 20, 2012.  A day etched in my heart forever.  Our little 7 lb., 13 oz. bundle of joy arrived at 5:13 p.m. that evening.

We were anxious to get Alec home to join his almost two year old big brother, Tate.  Seemingly, both Alec and I were well.  The following day, our nurse came to get Alec from our room to do the standard "heel prick" newborn screen so that we might be discharged to the comfort of our own home.  We were shortly out the door, so gracious for the life that God had entrusted to us.

In the early days, Alec slept often, and he didn't make a lot of noise.  He looked strikingly like his big brother, but was the total opposite in terms of personality.  Tate rarely slept, and I don't think that his arms and legs ever quit moving, even when he finally gave in to sleep.  I was concerned about Alec sleeping so much, but everyone kept reassuring me that he was just a "good baby".  I chalked my feelings up to just being overly anxious, and was thankful for the quiet moments.

By Saturday evening (day 3 of Alec's life), he was growing increasingly quiet.  That motherly instinct told me that something just wasn't right.  He wasn't urinating frequently, and I became concerned that perhaps in trying to nurse Alec, he wasn't getting the nourishment and hydration that he needed.  I remember standing over his crib, looking at him, and my husband and I discussing whether we should take him to the hospital.  When we were discharged from the hospital, we were given a can of baby formula, and I wondered if I should give him a bottle.  I struggled with this because of the admonitions not to give a baby a bottle in the early days if you're planning to nurse.  I talked to my husband about what we should do.  I even called my mom to get her opinion.  God led us to give Alec a bottle of formula that evening, and I have no doubt that it saved his life.  Alec sprang to life like never before.

It was not until three days later (day 6 of Alec's life) that we received the call.  I remember it like it was yesterday.  My husband, Jay, had stayed home from work with me that day.  I had taken Alec back to our bedroom to feed him and let him nap.  Jay walked into the bedroom and told me that he had just received a call from our pediatrician (who is also a dear friend of ours).  Our pediatrician had been notified by UNC Children's Hospital that Alec likely had a genetic metabolic disorder.  We were advised to not let Alec go longer than three hours without eating, and an appointment had been set up for us to travel to Chapel Hill, NC (about two hours from our home) the following day for an appointment with a metabolic specialist.  Wow.  Talk about life changing.  I remember crying from fear and saying prayers of thanks that he was still in my arms.  At that point, I realized that Alec had likely been close to a metabolic crisis on Saturday evening.

The next morning, we loaded up to journey to Chapel Hill for a meeting with the most wonderful team of providers that we could ask for.  We met with a nutritionist and a doctor, which we now do at each visit.  We are so thankful for the support that they have provided.  I encourage you all to search out a metabolic team in your area.  If you're unable to find the resources you need, contact us, and let us help you.

The first year of Alec's life, for both Alec and for us, was filled with naps rather than restful nights, and anxiety over whether he was getting the nourishment he needed. As time has passed, it has gotten easier, but the accommodations made for living with MCADD will always be present.