Thursday, November 28, 2013

A Thankful Thursday

If you had asked me a year ago about gratitude, I would have gushed about our newborn screening story and how thankful I was that LB's metabolic condition was detected quickly.  About how we were notified immediately, before he was ever in any danger.

I would have told you about the nursing assistant in the hospital who urged me to put some drops of formula on my breast to encourage LB to nurse during those early days when my milk was not yet in.  About how I was certain that repeating this practice during each and every nursing session in his first few days of life contributed to him being able to remain adequately nourished before we knew about his MCADD.

I also would have told you about our pediatrician who, after hanging up the phone with the newborn screening coordinator who notified him of LB's presumptive positive for MCADD, was literally driving to our house so that if we didn't answer the phone, he could knock on out door and personally give us the instructions to wake and feed him every two hours to keep him healthy through the night.  This same pediatrician gave us his home phone number so that we could always get in touch with him quickly and has been the most wonderful partner in LB's care ever since.

I definitely would have told you how grateful I was that I could hold my son in my arms and see him reach milestones and see him smile at his mommy, daddy and big brother.  I would have told you how everyone in our families offers prayers of thanks for his life and for those who contributed to saving his life.

Although I am most certainly still grateful beyond words for all of that, I am amazed at how my gratitude for newborn screening continues to grow.  I have met some incredible people in the last year.  Some of these incredible people studied public health and genetics and science and now work day in and day out to save babies lives as a part of their job. I learn from them every time I talk to them and I have a tremendous amount of respect for the work that they do.

I have also met other incredible people who have walked a similar road to mine, as concerned parents learning about the wonders of newborn screening only after it touched their lives in some way.  Some of these parents have healthy children like our LB, who only require just a little more loving care and attentiveness than any other child.  Some of them are mourning children that they have lost due to delays in testing or the absence of a test for a particular condition in a particular state. Still others of them have children that are fighting for their life every day with conditions detected too late or conditions that don't have a complete cure.  We are all a little different, yet all of us have united in a singular mission to increase awareness of the lifesaving and life-altering gift of newborn screening.  Meeting these other moms has given me both camaraderie and strength.  Knowing them and having the ability to share our journey with one another has expanded my passion and given me a never-ending energy to keep newborn screening advocacy at the forefront of my mind.

So this year at Thanksgiving, when we go around the table to share what we are most thankful for, I will once again say that I am thankful for newborn screening because it allowed me to know my child and for us to be a family.  In my heart, I know that this statement will be shared at every Thanksgiving meal for a very long time and that it will have a deeper meaning to me each and every year.

Thank you for reading my blog and sharing this journey with us.  May you also have a happy Thanksgiving with the ones you love!

Saturday, November 23, 2013

Family Pictures

We have a wonderful photographer who does a great job of catching kids with their happiest faces.  Here are some of my favorites from our recent photo shoot where LB was especially cute for the camera...

Sunday, November 17, 2013


Even though we have plenty of seats to sit in, these two always seem to want to sit in the same one.  Even though they can argue sometimes, these are the times that I know they love each other.

Saturday, November 16, 2013

A Powerful Story

I mentioned a few weeks ago that we had been working with a journalist to tell our newborn screening story.  I knew that the Milwaukee Journal Sentinel was working on something big for newborn screening, but I didn't realize exactly how big until I saw the spread in the paper tonight.  Our story is one of many stories that were researched and written over the course of more than 6 months by an incredible team of journalists. Our video made me cry and our story will run in Tuesday's paper. We are so very blessed to be the happy side of this story and we are still grateful each and every day for the newborn screening that saved our son's life.

For those of you visiting this site for the first time because of the coverage in the Milwaukee Journal Sentinel, I urge you to learn about the life-saving potential of newborn screening and support the state public health programs who oversee it. I have yet to meet a single person in public health who has anything but the best intentions to do their part in saving babies.  They do the best they can with the resources they have, yet many of them need additional resources, funding and staff to do it differently than how they are able to now. 

If you are an expectant parent, I urge you to ask your doctors about newborn screening and to thank the hospital staff who perform this very important test to ensure the health and safety of your newborn.  You might also want to check out this post for all the things I wish I knew when I was in your shoes.  There is no more important test in your baby's life than newborn screening. It gave us critical information about how to keep our precious baby safe and healthy and for that, I will always be grateful.