A Rough Day washed away with Tears

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Today was rough. I’m not gonna lie to ya. The true realities of our pre-diagnosis has really started setting in.

Some (statistical) facts:

1 in 7,000 are born with this. Considering the average of the last few years of US recorded births is in the 4 million range…this gives us an approximate number of 550 babies per year in the US. This includes still births (sometimes called miscarriages) that occur in the 2nd and 3rd trimesters – which is after 13 weeks gestation.

Of those 550, about half of them make it to term – or 38-40 weeks gestation. So, around 275.

Of those 275, half of them will be still born – usually because of the severe heart defects that can’t hold up to the pressures of labor and delivery. Around 137 of them or so.

Of the 137 or so that do live through birth, almost all of them go straight into NICU care.

After that, less than 13 of them will be alive at the time of their first birthday.

The median survival time is 14.5 days.

This is Trisomy 18, or Edwards Syndrome.

We don’t have our official diagnosis yet; we’ll be doing a blood test for that in a couple of weeks when enough of baby’s DNA is in my blood to register on the testing scale. But based on the severe swelling (or nuchal translucency) surrounding baby, and the entire intestine system that is developing outside of the baby’s tummy, instead of inside, the specialist we’re seeing is giving us his best guess of Trisomy 18 on this one. And he’s assuming we’ll be in that 50% that don’t make it to term. In fact, he’s already made arrangements for delivery options for me in the next few weeks, should I go into labor.

Dealing with the unknown is rather unbearable at times. (How do you make any sorta plans for anything?!) And the amount of mental and emotional energy needed to stay positive and do the normal tasks is enormous. I found myself raising my voice, yelling, at my girls alot today. My youngest was crying about not being able to find her blanket “I just want my blanket, Mommy!” she said. – all I could do was begin sobbing with a “Yeah? Well all I wanted was a healthy baby.” We were both in tears for awhile together. Crying out both of our very real hurts and longings, tears rushing as freely as the rain from the late summer thunderstorm outside our home.

Don’t get me wrong. We have our God. We have His peace. We have friends praying. And we have a strong family. But I’m not Ok with this. It’s not easy. All I know is that, “I can do all things through Christ who gives me the strength”.

Feel free to stick to this journey with us. And feel free to not. I wouldn’t blame you at all if you don’t. For those that do, though, I hope beyond all odds that it will have its moments of joy. But I’m sure most days will be full of tough decisions, painful challenges, and dim outlooks.

I can only hope that someone somewhere will get some sort of blessing out of what our God does for us and our little baby in all of this.

I cried a lot today. But the tears seemed to help wash away a lot of the fears and uncertainties and sorrows – tomorrow is a new day. And we can’t wait to celebrate it with our little one. Because, like we said from the beginning, every day is a precious gift. And we’re choosing to celebrate each one of those days.

Rick Santorum with his little full Trisomy 18 daughter, Bella, who is 3 years old.

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About Kim

I am a sinner, miraculously saved by grace, living by faith, and pressing toward the mark of being more like Christ. I absolutely love being a stay-at-home mom! I'm also a caterer for a few weddings throughout the year, a baker, and a party planner. And I love to play in other people's kitchens as well as my own! My husband, Chris, just finished his studies for his MA degree in Pastoral Studies. He's a wonderful (and super smart!) daddy - and the most loving and supportive husband. My two beautiful daughters, Chloe and Kami, are the joys of our lives! We pray that they both would be greatly used of the Lord. Throughout their short time here on earth, we have learned so much about ourselves, our God, and the gratefulness we have towards our own parents, who raised us in the ways of God's Word. Our third unborn child is a blessing as well - even after its recent pre-diagnosis of Trisomy 18, or Edwards Syndrome. This blog has kinda turned into a little journal of sorts of our dark journey down this rather uncommon road. I stay busy cooking, cleaning, gardening, and raising the plants I killed back to life, and homeschooling. I blog when get the chance. :) We are always happy to have visitors, so please stop by anytime! Although, if you do give us a call first, we'll make sure to have some fresh cookies and sweet tea available when you arrive!

6 responses »

  1. I just want to encourage you that during this time, instead of focusing on all the negatives, meditate on what God’s word says… That he knit each of us in our mother’s womb (Psalm 139:13-18), that he has a good plan for each and every one of us (Romans 12:2), that his plans are for good, to give us a hope & a future (Jeremiah 29:11), that Jesus paid the price for our healing (Isaiah 53:5), etc. Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Phillippians 4:8-9 “Summing it all up, friends, I’d say you’ll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious—the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse. Put into practice what you learned from me, what you heard and saw and realized. Do that, and God, who makes everything work together, will work you into his most excellent harmonies.” By focusing on how BIG our God is and how GOOD He is, will give you peace. I will pray for you & the little one growing inside. ❤

  2. Praying for you. BTW, I was telling a close family friend about your two precious girls on Monday night. You know they bring a lot of joy and happiness to mine and Keith’s hearts.

  3. I’m still here. Praying for you and crying with you. Not that I can offer you anything more than the promises you already know through Scripture. I hope it somehow helps to know that you are not alone during this time. I’m sure you have lots of family and friends (real and virtual ones) who stand along side you. Keep posting so that many friends will be able to pray for your family. God bless.

  4. Pingback: Heart failure. | Kim's Kitchen

  5. Pingback: Remembering Kyle in Philadelphia | Day 14 |

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