**Before you read I do feel it’s necessary to put a warning. If you are sensitive, fearful, or easily triggered by traumatic pregnancy and birth stories please do not continue. It is not graphic in nature but I do share my personal story that some might be upset by.
Dominic’s Story: Part 3
The doctors explained what Treacher Collins was, to what degree they believed my son had it, and what it could possibly mean for delivery. I remember hearing cleft palate, small jaw, difficulty breathing, and tracheostomy. And I remember crying. That deep soul kind of crying where my very being wept with grief. I cried for myself. I cried for him. I cried for the dreams and hopes, plans, and desires I had unconsciously been holding onto so very tightly without even realizing it. And I cried because I was scared. Really scared.
Gathering their files and with those knowing smiles I had come to recognize as heartfelt regret, they left my room with a promise to return the following morning with more information and a plan of delivery for when the time came. I called my husband and told him I needed him. Right now. Right that moment. I needed him to tell me it was going to be okay. And so he threw some clothes in a bag and began that long and weary drive from Fort St. John to Vancouver that very evening. Next, I called my mom. Because even as a grown woman, a mother-to-be myself, I really needed my mom too.
After a night of tossing and turning, I awoke early to both my husband and my mother coming into the room. I felt like I could finally breathe again. Like, with them, I could face whatever was next. As promised, the doctors and specialists came back and we discussed what delivery would possibly look like with my son having Treacher Collins. A c-section with either intubation or a tracheostomy before he was fully removed. The doctors prepared us for an extensive NICU (neonatal intensive care unit) stay. Months most likely. And feeding tubes, and hearing aids, and surgery.
And as that fear began to creep back in I remember a quiet whisper, a gentle stirring, an encompassing knowledge that while this was scary and overwhelming and unknown to me, that God was not surprised. He was not scared. And that He loved my son. He loved him so fully and so completely. And despite everything, God was in control.
The weekend flew by. More doctors, more tests, more planning, and definitely more tears. They showed us the NICU and we got to see him hiccup while on an ultrasound. My husband and I decided on a name that weekend. Dominic. Dominic William. Tuesday morning rolled around and Mom was due to fly out at noon. Ed would drive her to the airport and head home. Me, encouraged from the visit, was determined the make it to 31 weeks pregnant, a significant developmental milestone the specialists said.
And all of a sudden, out of nowhere, my water broke. I was only 28 weeks pregnant. I remember looking down in total shock and then up at my husband and my mom and saying “it’s too soon.” They cried out to the nurses as I mouthed a silent prayer “Protect him, God. Keep him safe.” Nurses ran in and immediately strapped the monitor to me. They alerted the team of specialists and yet again, I was rolled away to labor and delivery.
This time the contractions didn’t stop. This time they couldn’t control it. This time, it was it. I can recall how white and cold the operating room was. Shivers ran through me as I tried to sit still as the anesthesiologist placed a spinal. Ed, wearing a full medical gown and cap, was escorted into the room and sat beside my head as they draped that blue curtain sheet across my chest. The room was swirling with activity and people. All there for me. All there for Dominic.
And then he was here. The specialists worked in a flurry as they tried to secure his airway before fully removing him from me and cutting the umbilical cord. They rushed him to their work area in the delivery room and doctors and nurses flocked to him while the OBGYN and team addressed my very urgent and rather rough caesarian.
I don’t have a concept of time when he was born but what simultaneously felt like minutes and forever, the head ENT specialist crossed the room to us and yet again, with that heartfelt regret, explained to us that they, despite every effort, would not be able to save him. That our son, my boy, my Dominic, would not make it. He had an unexpected and undiagnosed hole in his trachea down farther than what they were able to access through a tracheostomy. That each breath he took was not making it to his lungs. I saw tears roll down the doctor’s weary face and yet again, my world crashed.
They inclined my surgery bed and brought my sweet little 2lb 7oz bundle of beautiful baby boy to me and helped me hold him. The specialist stood over my shoulder and helped pump what little oxygen they could into Dominic as Ed and I stared into the face of our son for the very first time. He had beautiful wavy brown hair and the cutest little button nose. Our whole world right there wrapped snugly in a hospital blanket.
Dominic and I were eventually taken out of the surgery room and rolled into the NICU. But not to the NICU we expected. No. We were taken to a room in the NICU, with a big yellow door, that is reserved for babies who don’t have any time left. A room that shouldn’t exist. A room that is never right. A room that no parent, no person, ever wants to enter. Because as they wheeled me into that room, I knew I would be leaving it without my son.
We held him in that room for 2 hours. 2 hours that my strong little boy fought for. 2 hours that we stared in awe over him. 2 of the most horribly heartbreaking and wondrously beautiful hours I have ever and probably will ever experience. Because even though our time with Dominic was so very short, it was so very treasured. Every word, every whisper, every prayer, every song. Feeling his little body move, seeing his cute toes curl, and looking into his brown eyes that were just like his daddy’s. Those moments, those short tiny moments, those I will have forever.
And then he was gone. Wrapped up in my arms, he was in heaven. There are no words. No words that can describe what it feels like to lose your child. To hold your son as they die. It’s unthinkable. Unimaginable. The memory still pierces an unknown place in the depth of my very being. And I wept. I weep now. The kind of weeping where your soul shudders. The kind of weeping that doesn’t even have a sound.
Oh Mama, I am so deeply sorry for your loss. So heartbreaking & traumatic. Virtual hugs and love❤❤
I can’t tell you how much I appreciate that you read and received this with such love and kindness.
Oh Katie, I’m so sorry for your loss of sweet Dominic. I can’t imagine the overwhelming rollercoaster of emotions you went through that day, and for the emotions that flood back when you think of him. I hope your healing heart is able to see him running around in heaven with Jesus, looking down on you both and his little sisters. I know he will come running to you with arms wide open when you meet again. Thank you for sharing your most vulnerable moments with us. Hugs to you 💙
Thank you for such kindness and compassion Cait. I truly look forward to the day when I get to hold him in my arms again. 💙
Dominic is so lucky to be able to call you Mom. Though his time on earth was far too short, he knew nothing but love. You’re so incredibly strong and inspiring. <3
Oh my sweet Mizzy 😉 I truly hope that he knew just how loved he was and still is.
I’m truly sorry you have to feel this pain it’s something I never would ever want another soul to feel. I myself unknowly until my water broke at 25 weeks went in to labor and later lost my baby girl. Sending you all the love and prayers from one heavenly mama to another!
Thank you so very much, Robin. You would never wish it upon someone but it is comforting to know there is another person who truly understands.
I had a miscarriage at 9 weeks so I know the feeling of losing an angel baby but I definitely felt that deep pain that you are describing Momma in every word that you wrote so beautiful but so sad at the same.
May the Lord give you peace, strength and love to you and your family.
And I pray that blessing right back to you Estefany.
As a mom and grandma, I just cannot imagine the sorrow. I am so sorry you did not have more time with your sweet son. Just so sorry.
Thank you, Sally. While the time I had with him will never be enough, I am so deeply grateful for what we did have. And I look forward to the day I get to hold him again in my arms.
Thank you for sharing this most personal and touching life story. I am so sorry for your loss.
I appreciate you taking the time to read about my son. It truly means the world to me. Thank you, Lisa.
I have no words. My mama’s heart breaks in a million pieces for you. You are so brave. xx
Thank you for taking the time to read Sue. That means the world to me.
You are a strong, strong, strong woman. Prayers from Texas. 💙
Oh Stacey. From the bottom of my heart…thank you.
Oh Katie, I weep with you as I read your words & can only imagine the depth of the pain & loss you’ve experienced. So thankful for a Savior who doesn’t waste our pain & is holding your sweet boy in His arms until you are able to be reunited with him again. The strength you carry in you is a beautiful example of the light & hope God gives.
Amen Maci. God is so incredibly faithful and He has woven a beautiful tapestry of his love and goodness out of these ashes.
My deepest condolences to you.
Thank you, Heather. ❤️
How heartbreaking. My tears and words seem inadequate. Much love. ❤💙
Thank you for such compassion and kindness in reading it, Allyson.
Oh I’m so so so sorry. There are no words. Just know he is still with you every day. Watching over his siblings. And his dad. And his precious mama.
Thank you, Chrissy. I definitely think he is with us each and every day. 💜
I am so sorry for your loss. Thank you for sharing your story. Your baby boy will forever be in your heart. And you have gained a precious guardian angel. Sending you so much love and strength when you need it most. God bless you and your family
I can’t tell you what your kindness means to me, Tara. Thank you.
Katie, this was so vulnerable of you to share. I can’t imagine how difficult it was to relive these memories. I hope you found some healing in recoding Dominic’s story. You are right that God loves him so abundantly, and even though he was only with you for a few short hours, he has an eternity with his creator. I am weeping because I felt the tiniest bit of your pain through your words. I’m looking at my son who is dancing knowing he almost didn’t make it and was supposed to have severe brain damage if he made it. But he’s in a gifted pre-K and already wiser than me. I’ll hug him even tighter today. I’ll thank God for creating Dominic and loving him. I’ll pray for your deep grief. I wish I could give you a hug ❤️
Oh, Brittany, I am touched by your kindness. God, in his great faithfulness, has woven these ashes into such beauty.
Thank you for your incredible courage. You dug deep inside and faced your most painful memory, you stared at it, reached out to it and then you lifted it out of darkness and exposed it to the light of day for all to see. Your bore witness to the power of faith and Gods enduring presence. Your little Dominics birth is sacred and you are blessed beyond words. He is always with you Katie. May he continue to be the guardian angel that protects your family until one day you are reunited for all eternity. God bless.
God was and is so incredibly faithful through it all. Thank you so very truly, Lucy.
Thank you, Katie for sharing your heartfelt and beautiful story. I cried thinking how sad and scary that time was for you. My heart sends you strong love.
Thank you, Lisa. I can’t tell you what your kindness and compassion mean to me.
I can’t even comprehend what your going through. Thank you for sharing. Your writing is beautiful even if the story is tragic.
There are no words to express how I feel reading this. A complete stranger is in your lives for a few moments and introduced to this disease. I feel your gut aching pain as I cry.
I feel heartbreak for you both, and for Dominic. All of the things you should be celebrating now were taken away from you.
I hope you and your family heal together and be there for each other. One day you will see your beautiful baby again.
Thank you for taking the time to read it, Amie. We still to this day celebrate his life, no matter how short it was. And keep him and his memory part of our family. 💙
I’m so so sorry Katie I have no words just send you love ❤️
Sometimes love speaks so much louder than words. Thank you Berry.
All I can say is, “I completely and utterly understand how you feel. My heart breaks for you and your family. May God comfort you and your family at this time 🙏🙏🙏🙏
Thank you Kathy. It’s been 10 years since losing him and God continually shows up with his healing.
Katie, the courage it took you to write this, I can’t imagine. Your beautiful baby boy is so fortunate to have had you and your husband, if only for a short time. You will be with him again and it will be eternally. Thank you for sharing. I can’t begin to imagine. 💙
I look forward to the day I hold him again. Thank you dearly Andrea.
“You keep track of all my sorrows. You have collected all my tears in Your bottle. You have recorded each one in Your book.” (Psalm 56:8). Thank you for sharing your heart wrenching story of Dominic. 3 days after my only child was born, we found out she had a heart defect that was “incompatible with life.” Thankfully, there was a surgery for it, and she had a total repair and experiences no restrictions today at 31. But I can empathize with at least some of the fear you went through. And I was much older than you were. The heartache of losing a child, though, is the stuff of mothers’ nightmares. I’m so grateful we have such a tender, loving Savior who completely understands the pain, brought you through it to such strength, hugs your boy between every adventure in heaven, and has secured eternity for you and your family to enjoy with Dominic.
I have that very verse written down. God is so wonderfully faithful and has woven a tapestry of beauty from the ashes of our heartache. Thank you for such kindness and encouragement Donna.
Lots of love to you and your family♥️♥️♥️
Thank you, Julia. I truly appreciate that.
Katie… This is so heartbreaking. I cried during the whole 3rd part. But, it is so inspiring the amount of trust in God and love you had in that experience. It is incredibly brave of you. I am so sorry you went through that. I am happy you now have 3 beautiful babies. Thank you for sharing.
Thank you for taking the time to read it Elizabeth. God was so faithful and He continues to be every single day.
Katie, this was so heartbreaking to read. A part of me feels like I’ve intruded in your life while the other part is so proud of you for having been strong and courageous enough to share this story!
I am so sorry for your and Ed’s loss. I know that your beautiful Dominic is watching over you 5 from the heavens above and hope that you find some comfort in knowing that he will forever be with you in spirit! <3
Thank you, Diana. My heart is for someone walking this same path to not feel so alone.
I weep with you as well. Glory will be sweeter when you see your sweet boy made fully whole. What doctors couldn’t do, God can.
Yes and amen Stephanie. The day I wrap my arms around my sweet little boy again will be a glorious day indeed!
You are the mama bear of all mama bears. I am sorry God chose you to have endure this. Much love to you and yours.
God has been and continues to be, so very faithful through it all. Thank you for reading Jami 💙
I wanted to reach out and tell you how much you inspired me. This loss doesn’t define you but truly refined who you are today. Your words spoke so clear of TRUTH. “God is in control!” I recently lost my husband two months ago to be exact. When you express holding your beautiful boy in your arms is something that I truly can say I understand. I held my husband in my arms to the very end. To think you and I were on a basketball court passing a ball around in highschool. Now share similar experiences and pain. Most importantly; our faith. How blessed we are as daughters to a high King. I can’t wait to see my beloved man next to your son both being held in heaven. Beautifully written. I shed tears of sorrow but joy with you. My Love. Elisha
Oh Elisha, my heart breaks for you. It’s not fair. It never will be. But you are right, how blessed we are to have a good Heavenly Father who we know is, despite all circumstances, always in control.
I stumbled onto your Instagram page in total admiration for your cake decorating. But your story- this story caught my eye, and I felt compelled to read it.
The reason why- I am a Neonatal Nurse Practitioner and former NICU nurse for over 25 years. And, I’ve had the incredible privilege to be a part of the lives of several infants and their precious families.
Your and Dominic’s story is all to familiar and raw. And, I can’t even begin to put into words how sorry I am for….everything- from the initial diagnosis to having to hold Dominic for the last and final time.
I’m so thankful that you shared your story. And, I am praying for you and your family. I’m thankful that He and His merciful grace will one day allow us to see our loved ones again. But until then, will keep a loving eye on us from above.
Oh Julie, your words have touched my heart this morning. The work you do and what it means to me, cannot be fully expressed in words. Knowing that my boy, even in his short life, is still hopefully remembered by those who cared for us and for him soothes my broken momma heart. Thank you for sharing.
Just came across you story, I actually have been following your Cake Instagram for a while but had not looked into your story till today.
I am really sorry for your loss, I can’t imagine the pain you and your husband have gone through but I can only admire you guys for holding on tight to God. I lost my dad at age 11 and almost 20 years have gone by since that day we got the news but ever since then God has not let us out of His hands. I can truly tell you that he has been our rock and refuge on good and specially bad days. That even though it hurt like crazy to loose our dad, God healed my heart from that pain. So I pray He does the same for you guys, to take care of you guys and even on those hard day to make His presence felt.
Thank you Jonathan. God has certainly been so very faithful through everything. I am so very sorry to hear about your father.
I’m so sorry for your loss dear Katie, heaven gained an angel, your sweet Dominic. I admire your baking skills so much that I look forward to every story and post you make, but this has made me admire you more for your courage and in your strong belief in God. Tears were rolling down my cheeks as I read your story about your son Dominic. I’m sure that right now he is looking down at you and your family from heaven thinking he is very lucky to have you as his Mom and that even if he’s not here with you now he will always have you in his heart and him in your heart forever❤️ Hugs to you and your family
Thank you Arcel. I look forward to the day when I get to hold him again in heaven!
Dear Katie , I came across your page for my love of cakes and ended up reading your sons story. My heart went so very soar for your loss . I can not imagine it. I could not help but sob at reading your story because it is a loss that no mother should endure. My little brother passed away when I was ten years old – he was 10 days old and had hypo-plastic left heart syndrome and did not make it. My mother had struggled deeply with the loss as it came so very unexpected and the doctors back then didn’t even pick it up as she left the hospital but she always felt this feeling of something is not right.
She is clinging to Isaiah 49- and explained to me that from it she found comfort that one day at the point of Jesus second coming she believes that an angel will bring her our baby brother to her and he will go up in her arms with Jesus as he comes to get us.
I hope that you are comforted in knowing , though the loss is unexplainably deep and will never fully heal until you hold him in your arms again, God loves you and your son!
Thank you for taking the time to read about my son and reach out Han. It means the world to me. I look forward to the day I get to hold him again in heaven as I’m sure your mother does too.
Thank you for sharing this beautiful yet heartbreaking story of your son with us, tears came to eyes while reading. It reminded me the 3 weeks my son spent on the hospital, the team of doctors and specialist that would come to see him each day, it felt like a movie. I’m so so sorry for your loss as a mom I can imagine the pain that you must feel on a daily basis. Your beautiful son is resting in the arms of sweet Jesus and he’s taking very good care of him. Keep strong and God bless
Thank you for taking the time to read and reach out Simone. I look forward to the day when I get to hold him again in heaven.
Oh, Katie…I’m so sorry you had to go through this. It makes heaven a little dearer when we have to give our baby back to God so soon. I’m wrapping you in prayer tonight, I’m so thankful I got to “meet” you online. You remind me of my daughter, Julianna. She has 3 little girls, too. ❤️
The day I hold him in again in heaven will be a joyous day indeed. I feel the same way Pamela. Maybe one day we’ll actually get to “coffee and cake” in person.
I just finished reading your story. I had my Lilli at 28 weeks. It is scary and I can relate in many ways. Thank you for sharing your story.
I appreciate you taking the time to read and reach out Beth.