Week 33 – Our (Not So) Normal Life

If you could see our family calendar this week, you’d get a glimpse of what this season is like for us. It’s bizarre to be simultaneously planning our baby’s birth and death while carrying on with the ordinary things of life.

One day I have an ultrasound, the next a hair appointment. Tuesday we met a new pediatrician for Samuel, Friday we meet the funeral director. I have a dentist appointment, Daniel has a diabetes appointment. I contact our doula, Bob calls the funeral home. Last week Bob and I spent our date night picking out paint colors, this week we spent it writing our birth plans. We now have a seven-page document spanning every scenario from stillbirth to live birth to Samuel passing away in the hospital sometime after birth, and still I don’t feel prepared. How can we ever really be ready? I never felt prepared to have our first baby, but I sure don’t feel ready to lose our second one.

Thanksgiving Day marked exactly 12 weeks from the day of the ultrasound that changed everything. As I told my family later, I think it was my favorite Thanksgiving yet. Something about this season, with the looming sadness, has made other parts of life feel even sweeter. There’s a lot I don’t take for granted anymore. I feel so thankful to still have my two boys alive and well. I’m amazed Samuel has stayed with us this long. After the initial diagnosis, I expected to lose him any week. I worried anytime I went a couple hours without feeling him move. Three months later, he’s kicking more than ever, and life almost feels normal. Almost.

I smile whenever strangers congratulate my pregnant belly. It used to feel awkward; now it’s kind of nice that at a glance we just look like a happy family with a cute two-year-old and another one on the way. It’s less complicated than trying to explain to strangers in the grocery aisle that, Yes I’m expecting another boy, but No, I’m not so excited for how close our boys will be growing up, because I’m not sure one of them will get to grow up.

At first after Samuel’s diagnosis, we prepared our hearts for loss. A stillbirth seemed likely, and we knew it would be a blessing if we even got to hold Samuel for a few moments alive after his birth. As the weeks carried on, we found stories of the T18 kids who survive longer, and our thoughts shifted from death to life: what if he makes it? Not just a few hours or days, but weeks, months or even years? We started exploring what it looks like to bring home an infant on a ventilator and feeding tube. What surgeries Samuel might need, what medical interventions it might take to prolong his life.

After my ultrasound this week, we are starting to feel like loss is more inevitable. They saw a couple new issues with Samuel: they spotted a mass in his lungs that could make breathing even more of a problem, but potentially make intubation less possible. There is a problem with his umbilical cord that could mean he’s not receiving all the nutrients he needs, and he could stop growing and thriving in the womb. It looks like his growth is starting to plateau when now’s the time he should be growing more than ever.

We’ve been praying God would take the hard decisions away from us, that we won’t have to make life and death decisions for Samuel. Or that if we do have to make decisions, it would be so obvious and clear which way to choose, and we’d feel His peace for every step. In some ways, these new problems could help narrow down our options for what is even possible for Samuel. We know ultimately heaven will be the best place for him, where he can be completely free and healed and whole, and so happy in God’s presence. We just don’t want to have any regrets that we could have done more for Samuel in his time with us. Please keep praying that God would lead us so clearly along the way in each step we should take. Thanks for caring about us and being part of our not quite normal life. 🙂

7 thoughts on “Week 33 – Our (Not So) Normal Life”

  1. Joanna, I just learned of sweet Samuel and the journey you and your family are on with your baby boy. My heart is with you, and my prayers as well. Prayers of peace, wisdom, and confidence. ❤❤❤

  2. So much love for you guys. Praying for baby Samuel that he is feeling all of your and Gods love in utero. And praying for wisdom, clear direction and overwhelming peace for you both in the decision making process. ❤️

  3. Dear Joanna, thank you for sharing what life is like for you & your family with the circumstances of your baby Samuel. Certainly you and Bob are Vessels of Honor for the Lord.
    Your close walk with the Lord is so evident & I am blessed when I read what you have shared & I do cry but I am comforted knowing you and your husband are walking in God’s grace that He has given you. In your cries for desperation for God’s intervention & the trust you have placed in Him for Samuel’s well being, we can be sure He has heard you and He will bless all of you for He loves you all. Know I will continue to pray for you! With Love & Blessings, Linda

  4. Ours hearts ache for you and we will continue to pray for peace that passes understanding, sweet times of intimacy with the Lord, and mercy for all of you. Love, rick & kimberly

  5. Joanna,
    My heart aches with you. Above all I pray that the perfect peace of God will guard your hearts and minds, and that His will would be done and His kingdom would come. …my 2nd boy (who is now 2) was diagnosed with a brain condition (HPE) in utero with a very grim prognosis. While I realize our experiences are different, I can likely relate to many of the emotions and thoughts that you’ve probably faced in this journey. Feel free to message me if you want to talk ❤️

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