Oh what joy it brings me to share this story with you. Our son’s life with Trisomy 13 was only 32 hours, but the impact he made and is still making is so great. I couldn’t be more proud to be his mom.
As I write this, Kaleb has been in Heaven for almost four weeks. I miss him more than I ever could’ve imagined, but I know he’s in the arms of Jesus and I would never take him from where he is now. Here is Kaleb’s story.
Finding Out We’re Pregnant!
February 5, 2021 – We found out we were pregnant! While we were so excited, we had also just miscarried a few months before. I was over the moon to have another little life inside of me, but I also had to fight the fear and worry that comes along with pregnancy after loss.
As time went by, all signs pointed to everything being okay. We had an uncomplicated ultrasound at nine weeks, and I was feeling my usual pregnancy symptoms. Around thirteen weeks, we decided to share the news with our girls. Watch this video to see their (very excited) reaction!
We also shared the news with family and close friends. It’s always such a joy to tell others when a new life is conceived. Everyone celebrated with us and we just couldn’t wait for this little one to get here!
While waiting on this sweet baby to grow – we incubated our first batch of chicken eggs, we took a girls trip to Florida to see friends, the girls had their first gymnastics performance, and we had a staycation at a nearby hotel with a pool (highly recommend!). Life was full and we were soaking in all the time we had left as a family of five.
Anatomy Scan Day
June 3, 2021 – After having three girls, we were so excited to find out what this baby would be! I assumed the baby would be a girl, because at this point it seemed impossible to make a boy! My five year old and two year old thought the baby was a girl, but my oldest daughter (age 6 at the time) was convinced it was a boy. She said, “I think it’s a boy, because we only have one boy in our family.” So of course, it only made sense that it would be a boy – right? I liked her logic. Here’s a video of their predictions.
We were thankful all of our girls could be there with us to find out the gender, we knew it would be so special for all of us to find out at the same time. My mother-in-law was with us as well, which I was so thankful for.
If you’ve ever had an anatomy scan, you know the drill. There’s usually some fear and worry leading up to it, but you talk yourself out of it and just believe that everything will be okay with your baby. That was me. I knew that things go wrong in pregnancy, but prayed and believed that wasn’t going to be the case.
I shared a lot on Instagram throughout this journey. Here’s a post of what happened during that scan:
After the midwife told us what she saw on the ultrasound, I remember them asking me, “What would you like to do?” I wasn’t sure what she was asking, and then I realized she was asking if we wanted to terminate the pregnancy. And once I understood, I said “We will be keeping our son. There is purpose in his life.” I’m surprised I got those words out, because I was still in shock.
Oh what an overwhelming time that was. I just remember feeling so numb on that ride home. I didn’t say a word, I couldn’t. I just felt crushed.
The girls didn’t know anything was wrong, and we intentionally waited to tell them until we had more information. The next week was a blur. But from what I can remember – it was full of phone calls and appointments. I felt overwhelmed. We had to switch to another OB that could deliver at another hospital where they were more equipped. We set up our appointment with a perinatologist (a high-risk pregnancy doctor) and then a pediatric cardiologist.
I think it’s God’s grace that I can’t fully remember what happened that week. All I remember is waking up each day just wishing it wasn’t true. I didn’t want this to be our son’s story. I didn’t want this for our family.
We did the genetic blood draw test for chromosomal abnormalities and awaited that call in the meantime.
Here’s the post of what happened when we got the results of the blood test:
Our son had Trisomy 13. And again, I was numb. I just couldn’t believe this was happening. I remember someone telling me that I was chosen to be Kaleb’s mom. Kevin and I were chosen to be his parents. And I can remember feeling so angry at that comment. I wanted to tell God he made the wrong choice. We were not equipped for this. At that moment, I didn’t want to be chosen for this, I wanted a healthy baby. And I told God those things. I wish I didn’t have those thoughts and feelings in that moment, but I also knew that God could handle it. He could handle my questions, he could handle my confusion, my hurt, my brokenness.
God was in the Details
I always say – “God was in every detail of Kaleb’s life.” And it started when we got Kaleb’s diagnosis of Trisomy 13. My brother (who is also one of my best friends), and his family had already planned to be with us for two weeks that Summer. He was in town when I got the phone call. Kevin was out on a delivery for work and couldn’t come home right away. So my in-laws came over, and then my brother was right behind them.
From the day we found out about our sweet boy and his extra 13th chromosomes, we were so supported and so, so loved. My brother is full of wisdom (don’t tell him I told you that). He gently listened to me crying out for this not to be true. He didn’t try to fix it, he just listened. And then he told me, “God has prepared you and Kevin for this.” I’m sure he said a lot of other wise things, but that’s what I remember. This was not a mistake. The timing, the diagnosis, the way this would impact our family and friends – it was all ordained by a heavenly Father who loves us so much.
Carrying a Baby with a Life Limiting Diagnosis
The doctors told me that Trisomy 13 is considered to be incompatible with life. They couldn’t tell us much more than that, but we knew that if everything they said was true – our son would not be with us very long after he was born.
June 15, 2021: This is what I wrote in my journal that day:
To our son:
Today we found out that you have a condition that is incompatible with life. Our hearts are breaking and it feels like all we can do is put one foot in front of the other. You are kicking and moving all day long, and I wish I could keep you in Mommy’s belly forever. I wish you didn’t have to come out.
But today we chose to celebrate you. Because you are worth celebrating. You are a part of our family and will always be a part of us. You are a blessing, a gift from the Lord. And even though we long for a life with you in it, the Lord knows where you need to be.
We will cherish every minute we get to spend with you. Every time you kick me I feel overwhelming joy. Joy because I get to carry you and joy because in this moment you are ok. We are with you, we are for you, and we have and will continue to take you to the throne of grace.
You have two little brothers or sisters waiting for you in Heaven. They’re walking with Jesus and one day we will all be there with you. And there will be no more pain, no more sadness, no more devastating news. You’ll never be alone, sweet boy. We will hold you as long as we can then you’ll go straight into Jesus’ arms.
While I can barely get through writing this, I know the Lord is working all things out. He has a purpose in all of this, your life has so much purpose! We are so thankful for you and love you more than we could ever put into words.
Your sisters here may not fully understand, but I know they are going to wish this wasn’t our story. They ask about you all the time and love feeling you move in my belly. They’ve got their pacifiers and baby blankets ready. They really are the best big sisters you could ask for.
Mommy and Daddy are fighting for you. We’re rooting for you. We have not lost hope and we know our God is able to do immeasurably more than all we ask. You are in His hands and we know that He loves you and knows exactly what you need. We’re cherishing every minute, every kick, and every time you make me run to the bathroom. I’ve never been so thankful for pregnancy symptoms.
God chose us to be your parents, and while we don’t understand and may never understand – we do know that you are not a mistake. I keep telling your Dad that I wish we were still in the garden, I wish we didn’t live in a fallen world. I wish Trisomy 13 didn’t exist. But it’s just a reminder that this world is not our home. Praise the Lord this is not how the story ends! Walking in glory with the one who created us, that is how this story will end.
Your time on earth may be cut short, but I promise you we will see you again. We decided to name you Kaleb. Your dad picked it because it means “whole hearted, strong and brave.” And that is what you will be. We will be heartbroken without you, but we will continue to celebrate you. God gave us you, and your life is worth all the joy and celebration we can give. We love you, sweet boy.
Most of my prayers for the following days, weeks and months were just: “Lord, help me to keep going. Help me to show up for my kids that still need me to be their mom.” I found a new sweetness in my relationship with the Lord through this journey. I needed Him more than I ever had, and He carried me through each day and each moment. Elisabeth Elliot says that in the midst of suffering, we need to just “do the next thing.” I didn’t need to move a mountain, I just had to keep putting one foot in front of the other.
There were so many nights I spent just crying out to the Lord to fix Kaleb. I begged Him to heal his earthly body. But I ultimately surrendered him. I know that every child we are given belongs to the Lord first. So I want their life to point to the goodness of God and bring glory to Him above anything else.
The rest of the Pregnancy…
After my brother’s family left, we had a number of family and friends stay with us over the next few months. They would come to be with us and just serve us. We could not be more thankful for the friends that showed up and continue to show up for our family. Watching the body of Christ be the body of Christ is one of those most beautiful things I’ve ever seen.
Our friends would cook meals for us, watch our kids, clean our house – you name it. They just overwhelmed us with kindness and love as we navigated our world being flipped upside down.
We had a few camping trips and adventures, too. We wanted to celebrate Kaleb’s life as best as we could. So that meant that even though he was in my belly, we still wanted to take him to do our family’s favorite things.
The Lord taught me so much in the months leading up to Kaleb’s birth. I learned how to trust him deeply, and I learned so much more about the character of God. I shared a lot of what the Lord taught me, and what we struggled with as well on my Instagram if you’d like to read more about that!
September – Kaleb’s birth month!
For the last five weeks of my pregnancy, we were having appointments twice a week to monitor Kaleb. Our goal was to just have a moment with him alive, and our doctor suggested this kind of monitoring so we can intervene early if needed. I honestly can’t remember much about this time. I was just cherishing every minute we had with him and was praying against any fear that something would go wrong.
Kaleb was such a strong baby. For his NST’s (nonstress test – tracks the baby’s movement, heartbeat and contractions), the nurses and doctors were always very impressed with him and how well he was doing for having Trisomy 13. My doctor told me that he thought he would survive labor and that gave us some comfort. For the first four weeks of those appointments, there were no red flags. He was doing great in there.
Our goal was to make it to 37 weeks and planned to induce between 37-38 weeks. We were advised not to go past 38 weeks because of the risk of complications these babies face late in the pregnancy.
We had one more appointment on September 24th. It was going to be our last one before our induction date (which was scheduled for the 28th). I still felt Kaleb moving and assumed everything would go just like all the other appointments. But in the middle of my NST, the nurse came in and started moving me around and switching the monitor position. My heart sunk and I was so worried he was not doing well. They told me that he was having some long decelerations and suggested we go to the hospital to be monitored for the night and induce in the morning. It was baby time!
Kaleb still had some decelerations that evening in the hospital, but thankfully he continued to bounce back and we continued with the plan of waiting to induce until the next morning.
Kaleb’s Birthday – September 25, 2021
This was it. We had so much anticipation for this day. And the Lord graciously gave us so much peace. Overwhelming peace the entire day. My best friend, Bethany, was also with us the whole day. She came to support us, and took lots of pictures, which I couldn’t be more thankful for!
They started Pitocin around 5:30am. Things don’t generally get going with my labors until they break my water, and my doctor was aware of that. So around 8:30am, he said I was progressing enough to break my water. My contractions started getting closer together and stronger, and I just knew it wasn’t going to be much longer. We prayed, and we worshipped, and we just trusted the Lord completely with this little boy’s life. And by the grace of God, Kaleb never had a deceleration the whole time I was in labor! He was never in distress, and I was so, so thankful for that.
I was getting ready to push, and at 10:43am on September 25, 2021 – our sweet Kaleb was born! “It is Well” was playing when he arrived. My husband shared this and I think it describes that moment so well:
Our Kaleb has arrived!!!! The moment he was born, I froze. All the things we had been told about Trisomy 13 babies seemed to be true. He was perfectly still and stiff. He wasn’t breathing. I didn’t know if my son had survived the birthing process. It wasn’t looking good. The nurse slowly reached over to evaluate and then grabbed the aspirator to clear the fluids from his mouth and air way. He then took a slow and what seemed to be painful deep breath and let out the faintest cry… Jenny and I broke… All of our emotions came flooding out at once. Happiness, joy, our girls and family would meet him alive!
We cried and held him and thanked God for him and his gift to us of seeing our boy for the first time and to hear his little cry!! It was everything we and our family and friends had prayed for. It was, to us, a miracle. And even more of a priceless gift. One that will never be taken for granted.
The joy in the room was palpable. I can’t even put into words what I felt at that moment. Mostly relief that he was here, and I was just so grateful that we were going to have at least a moment with him alive. I just wept when we heard him cry for the first time. It almost felt like I was watching it all happen from afar. We had been waiting for what felt like so long to meet him and he was finally here!
I can’t quite put into words what happened in those next 32 hours, but I’m going to try my best. All I know for sure is that every minute felt like holy ground to us. We knew we were experiencing something sacred. My husband and I were talking about it recently and I said it felt almost like we were in between Heaven and Earth.
Sisters and Family Members Meeting Kaleb for the First Time
Babies with Trisomy 13 can be stillborn, live for a few minutes, days, hours or even up to a few years. Because of Kaleb’s heart condition, we had no idea how long his life would be. We asked my Mom and brother to bring our girls as soon as they could. You can watch the video of them meeting here. They met him when he was about an hour old.
We had prepared them as best as we could for this moment. We didn’t try to explain Trisomy 13, but they knew that he would not live very long because of his heart. They had seen pictures of what a cleft lip could look like, and we told them he has an extra finger (which my five year old was very excited about).
When they got to our hospital room, they were just so excited to meet their baby brother. They couldn’t wait to hold him and just love on him as much as they could. It was such a sweet moment to have all four of our children in the same room for the first time.
Caroline, our two year old, was especially sweet to him. There was such a special bond between the two of them. It was her first time being a big sister and it really showed. Olivia, our five year old, was so excited to count all his fingers and toes. And it turns out Kaleb had an extra toe as well. She brought a lovey for him and she really wanted to offer him a pacifier, so she did that as well. Kenzie, our seven year old, was the protector. She made sure everyone was gentle with her baby brother, and had Caroline practice with her stuffed elephant before she held him.
After the girls came, my husband’s parents and his brother came to meet Kaleb. Then a number of friends came throughout the rest of the day. It was all just such a sweet and unbelievably joyful time. We are so, so thankful to everyone that came to celebrate with us that day.
The Gift of Time
When Kaleb was born, I remember looking at the nurse and asking her if he was alive. She told me yes, and I was just so incredibly thankful. And by the grace of God, that was the only time I thought about him passing until he actually did. It was truly the Lord that I wasn’t constantly wondering if he was going to be ok in that moment. Each moment that came, the Lord allowed me to be fully present with my son. I wanted so badly to soak in every one of his details, and desperately wanted to remember the time that we did have. I didn’t even realize this until weeks after he went to be with Jesus. For those 32 hours, fear was absent. Such a gift.
As time went on that joy-filled day, I just remember soaking it all in. We weren’t sure how Kaleb was going to eat, or even if he would be able to. The nurse suggested I put some breast milk on my finger and see if he could suckle at all. The first few times I tried, he didn’t do much. But after a few hours of being with us, he started suckling! He was able to form a suction around my finger and my goodness, I thought I was going to explode. After nursing all my babies, it broke my heart thinking I wouldn’t be able to nurse Kaleb. And while I didn’t get to nurse him, he did get some of my milk and that was so special to me.
As the day went on I felt like he wanted more than what I could put on my finger. So we started using a tiny syringe to give him some more. I would give him some of the syringe, then let him suckle my finger so he could swallow it. That was probably a little too much information about how he ate, but I was just so stinkin proud of him for doing that!
Kaleb’s First and Only Night with us
After all of our visitors left for the day, we were ready to get some rest. I knew I wouldn’t be sleeping much, but I did end up getting a few sweet hours in while I did some skin to skin with Kaleb. Just like a newborn, he woke up a lot that night to eat. My favorite memory with him was when we got about a three hour stretch of sleep while we were doing skin to skin. He wouldn’t stay sleeping for long, but once I put him on my chest – he settled in. Again, it just all felt like such holy ground.
Time to go home!
When we were going into the hospital to have Kaleb, we had five specific prayer requests:
1. For a smooth induction and natural delivery, with no additional interventions needed. For joy to fill the room when Kaleb arrives.
2. That Kaleb would survive birth and live long enough to meet his sisters.
3. For our family to be covered in peace in all the unknowns ahead, and for wisdom in all the decisions that need to be made during and after labor.
4. For Kaleb to be free of pain, and full of comfort until he goes to be in the arms of Jesus.
5. Above all, for God to be glorified. We pray that Kaleb’s life would point to the goodness and faithfulness of God.
The Lord answered each one of these prayers! And when I realized we might be able to bring him home, my heart was just so full. Thinking about him being home with us and making memories there was something I didn’t think we’d be able to do. But as time went on and Kaleb was still with us, we started submitting our requests to the Lord again. We asked for Him to let us bring our boy home. I’m still in awe of how many prayers got answered in those 32 hours.
We were having a sweet and slow morning with just the three of us in the hospital. We were still soaking in every detail and every moment. Then it was time to start packing up and getting ready to go home. Was this really happening? We were really going to get to bring him home? It all felt like a dream. The best dream ever. We were discharged around 1:00 and got home about 3:00 that afternoon. Our hospice nurse came and met with us at 3:00 and made sure we were prepared for what could happen.
Again, I knew that this was a miracle. I knew that he may not live very long, but the grace of God covered every fear during that time. My girls were so excited to welcome him home and of course never stopped saying “can I hold him?” the whole time he was there. My sweet friend came to take pictures that day and I’ll forever be grateful that she was there to document our time together.
3 hours and 40 minutes of pure joy
Something inside of me just felt so at peace during the next 3 hours and 40 minutes. All my babies were together. Kaleb was here, in my arms and in the arms of my family, and I couldn’t ask for more in that moment. When I was pregnant, I spent so many days on our porch swing crying out to the Lord. It was the most peaceful place for me to be. I asked him to take away the pain. I just felt so broken, and I asked him to hold me and comfort me so many times on that swing. Sometimes I would lay and look out at the mountains and just weep. I didn’t want this to be our family’s story. I didn’t want to live a life without Kaleb in it.
And now we were all sitting on that porch swing. And there was no sadness. There was no fear. Only joy. And when I say that was an answer to prayer – I mean it was the biggest answer to prayer we’ve ever received. We longed for Kaleb’s life to be full of joy, we longed for his sisters to be so present with him, for them to not be scared. And they were just so in love with their little brother. Kenzie read him one of her favorite books, Olivia told him a story and sang to him, and Caroline gave him SO many kisses. They gave him all their love for those 3 hours and 40 minutes.
Getting ready for Glory
Our home was full of family and extended family that evening. My mom and brother were there, and Kevin’s brother and parents were there as well. On our way home from the hospital, Kevin said, “I think we just need to have everyone over tonight. I just feel like we need to be together.” I went with his lead on that and I’m so glad we did. As much as I wanted to keep this baby all to myself, I also wanted to share the joy that was Kaleb.
After our pictures, Kaleb spent some time with his grandparents and the girls. And around 6:30, I felt the tug to hold him again and try to feed him some more. The girls were climbing all around and still asking to hold him, but I just remember saying, “Mommy needs to hold him for a bit.” And I’m so glad I did. Around 6:40pm on September 26th, Kaleb took one final breath that would be his last.
He went straight from my arms into the arms of Jesus. He never felt pain, he only knew warmth, love and comfort. The grace of God was present yet again. He was in every single detail. Moments before he passed, my seven year old was holding him and reading him a book. I am just so thankful that he was in my arms when he took his last breath, and that the girls had no idea that was happening in that moment. Grace, grace, grace.
Celebrating Kaleb’s Life
We are so thankful to Abel Speaks. They walked us through this journey and we felt so, so supported by them. They met with us during our pregnancy, helped us in planning a celebration for Kaleb, and sent us so many gifts and resources during our pregnancy and afterwards. We could go on and on about this organization and how thankful we are for them. For Kaleb’s celebration, we asked that in lieu of flowers, for donations to be made to Abel Speaks. They are a non-profit organization and are supported through donations. You can click here if you feel led to give.
We celebrated Kaleb’s life on October 9th. Family and friends traveled to be with us and we couldn’t be more thankful for that. We prayed again for the celebration to just be so full of joy. And the Lord answered that prayer as well. We worshipped our hearts out and praised the Lord for Kaleb’s life. The girls sang “Kaleb’s song,” which you can see here, Kevin and I shared a bit of Kaleb’s story and how his life impacted ours, which you can see here. The full service is on our church’s YouTube channel, which you can watch here.
As hard as it was, it was still such a joyful day. And we are so thankful for everyone that came to be there with us.
The Goodness of God
I think we often talk about the goodness of God when the Lord answers our prayers. And while the Lord said “yes” to a lot of our requests, he said “no” to healing Kaleb’s earthly body. And as hard as it is to not have Kaleb here, we always say that we would never take him from where he is now. He is in the best place possible, and we are so thankful that he is whole and perfect.
My heart longs for Kaleb, but it longs for eternity more. Eternity – where we will all be together, where we will all be perfect, without pain, without heartache, without sin. Romans 8:18 states, “For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” When Kaleb passed, I remember saying that as hard as this is, and as painful as this feels, I can’t imagine what Glory is going to be like. Paul tells us that this suffering can’t compare to the glory that will be revealed. Friends, what a gift Heaven is. What a gift that we don’t have to live in this pain forever. What a gift that Jesus died for us so that we can live in eternity with him.
It overwhelms me when I think about it. This pain I feel can’t even be put into words. My heart literally aches for my son. But that is not the end of this story! Praise the Lord. Redemption, hope, and eternity with the Father. That’s how this story ends earth side. And a whole new story will begin.
This brings me to the goodness of God. This pain that we feel does not feel good. It is not good. But the goodness of God is not found in our circumstances. The goodness of God is in who He is. And I know, without a shadow of a doubt, that He is so good. He walks with us through this pain. He is our comforter and our peace. He is where our joy comes from.
I always say that 32 hours with Kaleb is better than not ever having him at all. I would do it all over again in a heartbeat just to meet our son.
The Glory of God
We asked the Lord for the outcome that would bring Him the most glory. We shared our wants and desires, but we wanted what HE wanted. And He wrote Kaleb’s story better than we ever could have.
I wouldn’t choose this life, I wouldn’t choose a life without Kaleb. And the Lord has consistently reminded me that this is temporary. An interruption in our time. We will be together again. And oh what a beautiful day that would be!
Thank you so much for being a part of Kaleb’s story. We would love for you to share it with whoever you can. Our prayer is that Kaleb’s life would continue to glorify God and point to His goodness.
If you are reading this and your baby has received a life-limiting diagnosis, please reach out to me. My email is jenny@hopefilledhomestead.com. I would love to talk with you. Here are some resources I would recommend:
- Contact Abel Speaks
- The Morning – for anyone walking through grief after experiencing the loss of a baby
- Counseling – I am using Heart Song Counseling
I’m in the midst of deep grief as I write this, but I just want you to know that if you find yourself walking this road – you are not alone in this. And I am so incredibly sorry that you are facing this kind of heartache.
I will be posting more about grief and the road we’ve walked since Kaleb went to be with Jesus. But if there’s one thing I want you to know – know that you are not alone.
Thank you so much for being here,
Jenny
Read more…
The Grace of God Will Always be Enough
11 Ways to Love and Support a Grieving Friend
The Best Books for Christian Moms
Beautifully written. Kaleb lives on through each of you. Keep telling his story.
I would love to just talk with you, your such an inspiration.
Prayers continue for your family. This is wonderfully written!
Thanks for sharing your beautiful story! I had to take short breaks while reading it. It’s hard to take all in emotionally just reading it and I had been following your journey all along. You guys lived personallly through The whole thing! It is a heavy and holy story. Your brave young girls singing in church touched me so. Thank you again for sharing this journey with us and always pointing us back to God! Love & prayers to your family. Keep writing. You are truly gifted!