Category: Pregnancy & Parenting After Loss

Newborn Screening Awareness Month

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(Hover over – or tap on – each state to see how many diseases are included on their NBS tests)

September is Newborn Screening Awareness month so we will be providing information throughout the month about Newborn Screening (NBS).

Here’s a brief introduction:

Newborn Screening is a crucial component of ensuring the health of all newborns, yet many parents have no idea what is being done when the test happens.

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Photo of Isaiah’s NBS

Newborn Screening (NBS) happens between 24-48 hours of birth and it involves the pricking of the baby’s heel in order to apply blood to special paper (filter paper). The blood is used to test for treatable conditions – conditions for which timing is everything.

Did you know that each state screens for a different number of diseases?

I created the interactive map above to visually demonstrate the discrepancy from state to state, or you can see the chart below. I obtained all of this data from babysfirsttest.org on August 31, 2019. 

State Name Number of Diseases Screened
Alabama 46
Alaska 53
Arizona 31
Arkansas 32
California 63
Colorado 44
Connecticut 65
Delaware 52
District of Columbia 62
Florida 55
Georgia 32
Hawaii 49
Idaho 48
Illinois 64
Indiana 49
Iowa 53
Kansas 31
Kentucky 58
Louisiana 34
Maine 55
Maryland 61
Massachusetts 66
Michigan 59
Minnesota 61
Mississippi 61
Missouri 60
Montana 32
Nebraska 37
Nevada 57
New Hampshire 39
New Jersey 57
New Mexico 49
New York 60
North Carolina 37
North Dakota 52
Ohio 46
Oklahoma 54
Oregon 53
Pennsylvania 38
Rhode Island 34
South Carolina 55
South Dakota 50
Tennessee 70
Texas 55
Utah 52
Vermont 35
Virginia 33
Washington 34
West Virginia 38
Wisconsin 47
Wyoming 52

According to BabysFirstTest.org there are 80 treatable conditions that could be screened for at birth, but no state screens for all 80. Visit their site to learn more about what diseases are included on your state’s NBS. 

This means that your ZIP code determines life or death if you are born with one of these screenable/treatable diseases. 

Where you live should not decide whether you live or whether you die. – U2

There is a national panel called the Recommended Uniform Screening Panel, or the RUSP, and there are currently 35 diseases on the RUSP. Many states screen for all of these diseases but not all. 

As you can see, there’s a lot of work to be done in the realm of Newborn Screening to ensure that every child is screened equally for all diseases, including Krabbe. One thing you can do is contact your legislators to ask them to take NBS seriously and work on increasing your state’s screening panel. 

Comment below with any questions, comments, etc. Do you remember when your child was screened? Did you know what was happening? 

 

We Have Time

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Our boys are sixteen months old now. They walk everywhere, they love being outside, and they love experiencing new things.

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Most of the time I feel as though we have struck a great balance between being home and going out to do things, but some days I feel this pressure to do everything. If I find out we have to miss some event or function, I feel like they are missing out. I feel pressure.

This isn’t a pressure induced by social media, however. Yesterday I realized that it’s because all I’ve ever known as a parent is limited time. A deadline. A looming end point and the danger of permanent regret. 

With Tori, we had less than two years to try to give her all the experiences we could manage. Krabbe robbed us of time. Krabbe made us feel rushed. We did things she was far too young to appreciate because there was pressure. We didn’t have time to waste. We didn’t want to have any regrets for her, or for us as a family. And, thankfully, we don’t.

Yet, I have to stop and remember that, Lord willing, we have time with the twins. We don’t have to do everything right now, and we don’t have to be disappointed if we don’t take them everywhere to do it all at this age. They don’t know what they’re missing, and if they are happy, that is all that matters. We have the freedom to wait until they can better appreciate whatever it is we want them to see/experience. 

I’m praying that my heart can rest in that hopeful knowledge, that I can be better at just taking one day at a time, one moment at a time, and providing the boys with a well-balanced life. Rest is equally as important as stimulation and experiences, and I pray that we as parents will have the wisdom to do what is best.

I’m so thankful for this gift of time.

Twenty-Three Weeks

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Not long ago I opened the calendar app on my phone and counted the number of weeks between Tori’s birth and the onset of Krabbe. I was surprised to find that she became fully symptomatic at exactly twenty-three weeks. To the day.

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Last photo of Tori smiling, taken at age 22 weeks 6 days (January 6, 2015)

That’s how old the boys are today.

Our healthy, strong, Krabbe-free identical twin boys are the same age today as Tori was when a horrific disease began to steal everything from her – her smile, her laugh, her ability to swallow, and eventually her life.

Twenty-three weeks.

As I was typing this, I momentarily thought “I wish I would have known that she’d never smile again so I could have treasured it.” But my next thought was, “Hmmm…would I really want to know?”

So often we say that we would, but is it ever a good idea when it’s something we can’t change? I think in most instances we’d end up worrying so much about what was about to happen that we would be unable to be fully present. Instead, I will treasure the smiles she did have as well as the smiles from her brothers each day.

I have been asked many times if I think I have some degree of PTSD, and after considering the question, I can honestly answer no. Sure, there are things that will never be the same about me – or my parenting – after Tori (for instance, I definitely check to make sure the twins are breathing far more than I expected to do), but I most certainly do not have PTSD. Brennan would tell you the same. We are living in joy and peace.

And that leads me to wonder why.

Why are we okay when so many who’ve walked in our shoes aren’t okay?

I had a conversation with my chiropractor during my most recent visit and it helped me in unexpected ways.

She remarked that she has loved seeing how Brennan and I have walked through this journey with grace and joy (we take no credit for that), and she loves how we’ve chosen to live out our faith. Her encouraging words (and great adjustment) would have been enough, but the Lord chose to continue to speak through her.

I told her that I often wonder why Brennan and I seem to be set apart from so many who have lost children, how we seem to be handling it so differently than most, even than other believers.

It’s not that we never think or talk about Tori (quite the opposite). She’s very much a part of our home and we will make sure the boys know everything about their big sister. It’s not that we’ve “gotten over it” because you really don’t ever “get over it” when you’ve lost a child.

(Side note: who defines what that actually looks like? Who makes the rules? Not getting over it doesn’t have to mean crying all the time or living your life depressed. It simply means that you are never the same, but it has such an unnecessarily negative connotation. We will never “be over” losing Tori but we also choose to live the life we think she’d want us to live – she’s in Heaven, happy as can be, so why wouldn’t she want us to live in joy?)

I expressed to her that I feel sorry (not pity, but genuine sadness) for those who can’t move on, who cry daily, who can’t seem to find joy in their lives after a tragedy like child loss. I mentioned my blog post about not visiting Tori’s grave. That we’re different but I can’t figure out why. That I wonder if we’re “doing it wrong” because we’re genuinely doing well and so many around us aren’t.

And then she said this: “it’s because you don’t let it define you. It’s because you find your identity in something (someone!) greater.”

In that moment, it clicked. She is totally right.

It’s not my identity. I’m not a victim, and I’m not a martyr.

Yes, I lost a child. Yes, it was terrible.

And yet, losing Tori doesn’t define me.

Did it impact me? Of course. But that’s not what defines me. The love of God (and my love for Him) defines me and my life. His mercy and grace overwhelm me and fill me with abundant gratitude. His faithfulness reminds me that we will see Tori again in Heaven for an ETERNITY. In a perfect place. With perfect bodies. No Krabbe. Forever.

I could elaborate more, but I already did in Even So, Joy 😉

We all have to choose what defines us, and I choose to NOT be defined by child loss. ❤

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As I watch Tori’s brothers today, I am amazed at their strength, at their smiles, at their health. They are doing things that Tori was never physically able to do – before or after Krabbe – and each new achievement is worthy of celebration. Every milestone reached fills us with awe.

That’s why I wanted to count the weeks.

That’s why I wrote a note on the calendar to pay attention to their development at twenty-three weeks.

Not because of PTSD. Not because of grief.

But because I am so indescribably thankful for God’s blessings to us. For his faithfulness. For His love. For every smile that these precious boys display. Everything. I don’t deserve this abundant life He has given to me, but I will embrace it and praise Him for it.

Even so, it is well with my soul. ❤

Our Birth Experience in Photos

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In the exhaustion that accompanies newborn twins, I completely forgot to share our birth photos! We were so blessed to have Erin Fortney Photography present so that I didn’t miss a thing and she exceeded our expectations. Far exceeded.

If you live in Central Pennsylvania and are pregnant, please consider hiring a birth photographer – specifically Erin! – because these are moments you will treasure for a lifetime.

When you have a c-section you are surrounded by blue sheets and it feels like you aren’t able to experience the birth of your children fully. I felt like I missed the first hour of Tori’s life and we only have five or so pictures of what happened while I was on the operating table. Because of this, I didn’t want to miss any of the twins’ first moments, and Erin made that happen!

Here are some of our favorites – it was hard to choose but I couldn’t upload them ALL. 😊❤️ We are so thankful for Erin and cannot recommend her highly enough. And I promise I wasn’t asked to do this or paid for my opinions 😉 People like her are rare these days and I am so thankful that Tori brought us together. ❤