Huey the Hole’s Rein of Terror: Life After G-Tube

By: Candice Brown

PRE: 

My son and my experiences with Huey the Hole are definitely not common but neither are our DYRK1A kids or their diagnosis. I hope this soothes at least one mama’s heart when she’s feeling her struggles are weird, awkward and wrong. You are never alone.

Previous articles by Candice:

http://www.dyrk1a.org/main-blog/2021/11/22/an-open-letter-to-my-dyrk1a-sons-doctors

http://www.dyrk1a.org/main-blog/2021/6/21/from-tommy-the-tummy-tube-to-breastfeeding-success-candace-brown-shares-her-journey-with-infant-feeding-and-dyrk1a

Huey the Hole’s Rein of Terror

Never Grow Up

My feet rustled on the plastic painting drape and I admired the creation my family had made: our future baby’s nursery. My hips ached, my arms were sore and beads of sweat were cooling on my neck. At 28 weeks, Baby Mack was kicking up a storm, Karate sparring with my organs. Our middle ultrasound had gone off without a hitch, leaving my husband and I basking in good news and confirming our baby’s name, Macklam. Everyone assumed the cake and nursery would be blue to represent the singular colour of ‘boy’ but my gut told me it should be green. My brain was loaded with ideas of imagination, adventure and fairy tales, imagining that, one day, he would walk in as a toddler roaming for toys and tantrums. I lifted the paint cans and admired the colour, one I only referred to as Neverland green. I found a large Peter Pan decal that said ‘Never Grow Up’ and smiled. Don’t we all wish we could stay young forever? Doesn’t every mom wish her little one would slow down and stay a baby?

A few weeks later, the room would be darker as I sat in the new rocking chair, my phone on speaker and my heart at the back of my throat. The paint smell was just starting to disappear, replaced by laundry detergent from the clean baby sheets. My midwife’s voice was shaky over the phone that night, calling past her usual hour and speaking slowly, allowing me time to take notes. The growth scan came back with results that were concerning; Mack had shockingly small long bones, an enlarged kidney and I had an excess of amniotic fluid. Listening to my midwife, I read and re-read his decal, not knowing that this moment would replay throughout our stay in the NICU and through our son’s diagnosis of DYRK1A. It would harbour all the fears of Mack’s delays; will he never grow up?

One year later, my baby boy was placed in his crib without Tommy the Tube, the g tube that aided his feeding issues for four months. I was elated, and kissed his flat bandaged stomach, admiring how his pyjamas sat. I soaked in the closeness of his body against mine as he drifted asleep for his nap. My family and friends congratulated me for Mack outgrowing his feeding tube and most comments left me feeling proud, like I had finally found my footing as a mom. Although well meaning, other comments left me gritting my teeth, implying the tube was never needed to begin with and thank god they no longer had to know about this weirdness. ‘We never liked that thing’ and ‘you should sue the hospital’ were all meant to be encouraging word but I would reel for days in how isolated I felt from these people who were all looking to show us love and support.

The G Tube nurse had told us that his stoma, or Huey the Hole as we dubbed him, would grow over within a week or two.The small hole was no bigger than an eraser tip in diameter but began to grow unexpectedly. The biweekly treatments of silver nitrate were assumed to hurry healing but they came and went with no success. During this time, a small comment ‘there might be leakage’ said by the nurse who removed the g-tube  would play on repeat as I struggled to survive the healing of Huey. Mack’s hole was a direct line into his stomach, and when there was a small amount of spillage from his belly in the first few days, I refrained from panicking. 

A Typical February Afternoon

By the time we hit the second month mark and his food was still spilling out like a cruel broken cup, things felt bleak. The leakage was so unbearable that I would change his shirt up to fifteen times in a day, trying to keep the area dry and clean. Macklam would scream in pain for so many hours of the day, a cruel rash forming around his hole, red and scabbed, worse than any bum rash he had. Blisters started to form and break, leaving broken soft pink skin exposed to his shirts. We took to covering it in a thick layer of bum cream every diaper change. Soon this became hourly, wiping away the milk and food spillage with gauze, blowing it dry and reapplying bum cream and a fresh shirt. It would last around 20 minutes before the spillage would stain his shirt again. 

Just after valentine’s day, I was in the throes of Huey the hole’s chaotic rein on my life. It was a sunny winter day, the kind that looks warmer than it was. Travis and I were in the basement after a few hard nights with Mack. I longed to be in the sun but my energy felt zapped as soon as I thought about the work to pack Mack into the car. I changed his diaper and lifted his sweater to see the mess that was left through his stomach hole. My throat caught. Each time I saw the mess that his hole was making, I felt an ache of guilt and helplessness. I am his mom, I am meant to protect him from harm and pain and yet I was the one to take this tube out of him. Mom guilt? Is this what they mean? His rash was especially bad as I used gauze to gently dab up the food on his belly. Mack let out a wail as the gritty pear puree ground into his rash. My hands couldn’t move fast enough. I knew he would feel relief but getting to that point made me feel sick. The tears started up again, the anger and frustration with our situation. No one was to blame but me. I thought of all of the milk I had worked so hard to get into Mack’s belly and the voices of old NICU nurses echoed in my brain, measuring mls and ozs lost. I told Travis I was going to weigh him again, I’m worried he isn’t getting enough milk. He let out a careful sound that I knew meant what I was doing was self torture. It had been a long week of emotions for me, my back ached from bending over Mack on the floor and my throat was permanently prickly from all the crying. I would try to update Travis when he got home from work about each thing I did but the mundane movements that blended together didn’t seem as compelling as the giggle fights and fun moments. Travis couldn’t understand why I continued to do the amount of work I was doing and seemed to be trying to hold me back…but from what? To me, it seemed to be holding me back from helping Mack. But to him, perhaps from the edge of the cliff I was building for myself. He wanted me to have relief and a break but had no understanding of all the details of what was happening or why. I was monstrously territorial over Mack and his care at this time, feeling the sole responsibility of fixing the hole that was created. I feed him, I will fix him. I am his mom. Once Mack’s face eased to relief, I smiled at him and pretended to bite his feet, a little game he loves. A big baby laugh erupted through my little man’s throat encouraging me that I was momming correctly. Dry shirt, new start. I stood up to put the dirty clothes away and looked down to see a small wet hole starting. One laugh and out goes a ml of milk or puree. I started to cry and Travis wrapped me in his arms. He liked to tell me it’s okay but I knew it was not. I knew that this was just the beginning of disappointments, delays and frustration and I couldn’t find a light at the end of the tunnel. I reached down to put on a fresh shirt, sobbing over Mack’s confused expression. Travis lifted me up gently by the arm. Just leave it he said softly, his mouth finding the top of my forehead in a kiss. I can’t. I can’t just leave it. Leaving it is dirty and makes a rash that causes pain. Doesn’t he get it? Can’t he see? Can’t he understand that I’m on a hamster wheel and I need someone to pull me off? Later that afternoon, we drove in silence to the lake. He knew I needed sun and I just wanted a new place to feel sorry for myself. We got out over the water and Mack was snug in his winter jacket and stroller. The sun was magnificent and felt like relief, like childhood days playing with friends. We rolled Mack up to the empty beach and watched the mountain tops reflecting off the water. It was only a handful of years before that this was where Travis and I would have flirtatious dates in the summer and wet kisses swimming. I took in a full breath and watched him snapping photos of Mack’s smile. He might not have understood what I was going through then but he loved us and for that afternoon, it felt like enough to get me through. I pushed aside the fear of what I would see during the next shirt change. 

Missed Milestones

Mack was ten months old. What did that mean?

Well if you ask Google or the nonsense apps obsessed with milestones that I added to my phone before Mack’s diagnosis, you might hear words like cruising, pulling to stand, scooting or crawling. I would flip through social media where every kid’s parents around Mack’s age were sharing their milestones. Smiling faces and pride in their child’s accomplishments. I was lost on how to communicate with these fellow moms without either quieting my experiences or telling them the truth which was followed up with ‘well at least he…’, ‘every kid goes at their own pace’ or ‘he’ll figure it out! I just know he will’. On these days, I would be carried away with fears. I would imagine Mack in the future; Would he ever fit in with these kids? Would he ever make friends? Would he ever want to move? Would he need equipment to help him move? 

Each upcoming milestone felt like a fresh start: maybe genetics were wrong, maybe my magical son would overcome the odds, maybe we would be a movie or book ending, ‘they never thought he could but he did’. And each time he slipped out of the Google dictated window of average milestone achievement, I would curse myself for having hope. Strangers would kindly comment as they saw us in the park ‘They’re so cute before they’re walking and talking eh?’ and I would cringe. ‘What is he 5 months old?’. I would smile and nod dumbly. 

One Sunday, I woke up from a long nap with aching and full breasts. I put Mack on me and caught myself marveling at our last accomplishment. I reminded myself that he will meet these milestones when he’s ready. Mack drank so naturally and with an eager happy sound and I nearly forgot the struggles of the months prior. I smiled and felt his tiny body up against me. I traced his cheeks and chin with my fingers, his skin the same temperature as mine. So warm and sleepy…and wet. By the time I realized what was happening, my shirt was drenched with fresh milk which had slid in and out of Mack’s body like a waterslide. I scoffed aloud, placing a receiving blanket between us to soak up the spillage coming out of his belly hole. Regret, guilt, anger, all the emotions bubbled over. 

My ever watchful mom had witnessed moments like this, my exasperated sighs and numerous shirt changes. My mom, the woman who raised us with no money in a trailer and never let me know that most kids had more than one barbie. My mom, the woman who created a home for my Barbie out of laundry hampers and empty cracker boxes. My mom, who reminded me there is always a solution even if you have to think outside the box. My mom dropped a piece of fabric on my lap. It was a thick belt that would cover Mack from armpit to pelvis with a pocket in the middle and velcro on the ends to fasten it. The pocket would hold a menstrual pad which could be disposed of every hour or so when it was filled. Machine washable, life saving, this was just one of several life lines that my mom created for me. Although it didn’t help with the pain and rashing, it became a practical accessory that helped us on trips to therapies, out on walks and ensured I would no longer need to do laundry multiple times a week. 

Once the belt obscured his leaking, I got my first taste of what an invisible disability looks like. On a visit to relatives, the topic of his tube would come up in the past tense ‘aren’t you glad that thing is gone?’ and the question would linger. I would smile but my mind started to wander. Was I glad? Would I pop it back in if it was an option? Mack would often cry and whine when Huey the hole would get agitated and the rash grew too large. People hearing these cries were always full of answers; Maybe he’s hungry? Maybe he needs more breast milk? Maybe he’s cold? Maybe he’s tired? I would explain that his cries and fussing were due to his hole. I would explain how it worked, why it was painful, even show them what it looked like. They would wince at the sight of it but persist with the suggestions. ‘When my son would cry like that, it was usually that he was…’ cold, hungry, thirsty, bored, you name it and I heard it. No one believed me and once his shirt was on and there was no sight of the wound, they would engage with suggestions as to how to care for my baby. Their words were assertive, he is just like every other child, you are just like every other mom, don’t think your life is any harder than anyone else’s. 

Therapy

The morning of therapy, I had wrapped Mack’s belly in his homemade belt and it gave me strength. Not a traditional mom to mom gift but one that empowered me to head into his physiotherapy. I got my phone prepped with songs from Moana to calm him if he was in pain and plenty of bum cream and gauze in case we had to do a ‘clean up on aisle belly hole’. I packed four shirts and two pants, just in case. I felt prepared. The team greeted us with smiles and encouragement “he’s grown so much!” I felt warm being around these women who had worked with kids like Mack and would remind me, with kindness, that each kid moves at their own pace and in their own way. 

Today’s therapy team was Elaine and Elizabeth. Elaine, our physiotherapist, is one of the first professionals I warmed to, reminding me that people could be fully good and kind without agenda. On our zoom calls and meetings outside, her big smile was meant for Mack who was admittedly oblivious but I reaped the benefits of her kindness. She would dress in comfortable and colourful dresses and I was transported to kindergarten and the adventure of wonder that childhood brings. She helped me see the world through Mack’s eyes and marvelled alongside me at his successes. Her enthusiasm for Mack’s unique personality reminded me on hard days that he could be loved by someone besides me. Her emotions would brim over without boundaries, sometimes letting tears well up in our sessions, unabashed, gushing at my love for Mack and making me feel seen as a mom.

Elizabeth came into our lives before Elaine, a face on a screen for many months before we met in person. A tiny woman with a soft voice and an eagerness to learn all aspects of child development. She has been the queen of throwing positive comments our way that have helped me put an armour up on rough hopeless days and helped me let my armour come down on days I wanted to share without fear. She often would sit quietly when I updated her but I could tell her brain was combating which of a million things she wanted to offer to help. She would lead our team of therapists, always having the answers and replying with emails or in person with empathy and compassion. Our development centre became a safe place to mother the way I wanted and for me to learn the best way to guide him. On days with the leaky belly hole, I was more reserved, I feared them seeing us this vulnerable and wondered if I would still feel like a super mom if they knew what things were like day to day. 

That day, I began answering questions from our team about Mack’s developmental stage and soaked in any ideas they gave me. Elaine outlined the next steps of development for Mack including rolling and getting into a crawl and I could feel the prickle of tears at the back of my eyes. We would try vainly to get him to reach out for furniture or a toddler walker to entice him into movement. He would look at me, confused, before his arms would go limp at his sides. No thanks mom, I don’t want that. Elaine cooed at Mack and asked if we are able to do any tummy time to help him gain strength in his arms and shoulders. I nonned as if it was not a problem, wanting to get an A in momming from our team. I would not explain the exhaustive measures of trying tummy time over a towel and watching the liquid in his belly pour out, watching the weight we were trying to put on him soak up into his towel. I didn’t tell her about the screams of pain from his belly hole and crying over his little body while he writhed in pain, feeling helpless. I wouldn’t fully get into the heartbreak of offering Mack his toddler walking toys to watch his confused gaze and his arms grow limp at his sides. I wouldn’t explain how putting him in a crawling position made his feet turn blue for an instant because his mom was so eager to see him crawl forward but he wasn’t ready. There was something holding me back, not trusting that any place could be safe for such strange experiences as ours were these days.

As I spoke about what we’ve been trying so far in an overly chipper tone, I saw a cloud pass through Elizabeth’s eyes. I followed her gaze to Mack. He was sitting up with his belt sliding up his body and the milk visibly leaking out down his shirt and pants. I laughed, oh you know how it is…except no they don’t. My face flushed and stomach turned. I felt as though I had been caught tripping up the stairs or my skirt was caught in my underpants without my knowledge. I couldn’t stop my brain from wandering down the shame spiral. Him and I are weird and wrong. My child has milk leaking from a hole in his stomach, he’s making a mess on the mats at our therapy team’s centre that are trying to help us. The two kind women asked if I needed anything to help with the clean up. A strained laugh came out. I'm fine, I'm fine, I just wish he would move is all, I wish he would roll, crawl, scoot, shimmy, do ANYTHING but lay there leaking. Only a shaky laugh came out. As I hurried to get him appropriately covered and dry, Mack started to fuss and we had to cut the appointment short. Two weeks looking forward to this conversation and it was agreed that we touch base after Huey healed.  I felt a mix of shame and relief that this would be the last time we would need to do this with Huey. As I strapped Mack into his carseat, he caught my damp eyes and his gaze was serious and concerned. Oh buddy, I’m sorry I can’t be better for you right now. Driving home, I would make up fabulous stories of how mama knew things would be okay. He didn’t need to hear them, but I did. 

Surgery Day

In late February, Christine the g-tube nurse emailed me recommending we plan for a full surgery to close Mack’s stomach hole. I remember the exact moment I read it, I remember the relief and fear rushing over my body, crying on top of Mack, more concerned with a twirling toy than his mom’s emotions. Our busy house of five was empty and it was only Mack that heard my sobs echo through the kitchen, exhausted tears full of the hope of relief. 

The surgery came three weeks before I was due to go back to work full time. At eleven months, Mack had mastered sitting up and was sleeping a solid 10-12 hours a night but refused to move in any direction. He would babble when he wanted to, infrequently and never if anyone was around that wasn’t from our household. The day of surgery, he was not allowed to eat or drink for the two hour drive to our Children’s Hospital. We settled into our room and they handed me a gown that went down to his ankles. What began as two hours of hunger soon became five and six. A kind nurse popped in to update on the delay and suggested juice or water to fill him up for the time being. She had no way of knowing that getting him to drink anything besides from the breast was useless at this point. Piles of cups had ended up in our cupboard with no success. The nurse returned with apple juice and I smiled and pretended that he would just love this. Mack sat in the pre-op bed in a pink and white patient robe, sad and hungry and I sat with apple juice. Isn’t it ironic that tube feeding this would make his life so much better in this moment? I laughed at my own joke. Mack didn’t think it was funny. I tried showing him how to sip from the edge and filled a syringe which he refused to open his mouth for. Finally, the spoon for his puree was sitting in the bottom of my bag. Would he try it? I dipped the spoon in, making loud happy noises and drinking it myself. His skeptical little eyes narrowed. What are you up to mom? I offered the spoon to him and he drank the juice without issue. Yes! Success! I was elated and let out all my mama hurrahs. A nurse came in to ask if we needed anything and I laughed manically “he drank from a spoon!” Her eyes widened. Not out of excitement or disbelief but likely from fear over my strange enthusiasm for my kid drinking apple juice. Mack and I took photos and videos. I felt useful, like I was getting something in him, helping his belly stay full even if just with juice. It was maybe an hour later when he laid down in the bed that I realized most or all of the juice had leaked through to the bed below him through his hole. I closed my eyes. How do I keep forgetting? Towels, new clothes, blankets, reset. Damn this hole, I was ready to never see Huey again. The surgeon that popped in before our time was the same kind man that had placed the tube originally. He was a handsome, tall man with ginger hair and bright eyes. He smiled when I corrected his name for the hole ‘no, no, it’s Huey, he has a name’. When he left for surgery, his eyes sparkled and I trusted him fully…I had to. The surgery went well and Huey disappeared into the night, replaced with what we called ‘Sammy the scar’ who has now become just another part of Mack’s body and a story he’ll never remember.

An Open Letter to My DYRK1A Son's Doctors

By: Candice Brown

To Whom It May Concern:

Congratulations! Your business has shown an interest in working towards becoming an inclusive space for parents and caregivers of people living with disabilities and/or extra needs. 

My story:

My son has been in my life for eighteen months and has a rare chromosomal syndrome which has a lot of challenges including feeding, neurological differences/developmental  delays and a few more. My son is a loving, quiet, low key kid who loves the simple things like rubbing his face on blankets and laughing at the garbage truck. One parent stated that most people spend their whole life finding joy when our kids are born with it. Recently, when calling businesses and organizations to book appointments or be added to wait lists (childcare, general doctors, dentists etc) I’ve noted a lack of knowledge about how to approach questions pertaining to the appointment. It’s tough in this world to know what is “okay” to say or what might offend or upset someone. In the most honest way, I’m hoping to write this to inform so you can navigate this terrain in a honest, open way that I think most people have full intentions of. I send this letter with the hope that it gives a road map on how to navigate these conversations with knowledge and questions that empower you to gain the information you need to proceed. With this information, I hope to bridge the gap of awkward good intentioned questions or assumptions about what it means to have a child with extra needs.

A few things to consider during this call/interaction or even as an afterthought email or call:

You may have an idea of what extra needs/special needs/disabilities looks like but you likely don’t know this child/person. 

I’ve often had assumptions made about my little dude based on the terms I use “special” “syndrome”—we’re often told “he won’t do well in this space, it’s too loud, too busy, too stimulating” which is so well intentioned to help us navigate a space that might be tough for him. However, uniquely himself, his personality is low key, quiet and fascinated by loud and busy surroundings, especially people. 

Consider asking questions instead of assumptions:

“Will the loud sounds and busy atmosphere be bothersome to your son?” 

“Does your son deal with sensory issues when it comes to loud sounds?”

When I mention my son’s extra needs, I am always hoping the person won’t change how they’re talking to me or interacting with him.

If I mention it, it’s because I think it’ll help you be prepared for some things. If I mention a few challenges, it’s particular to his experience in your area of business. In some cases, people want to cut the conversation short, move on so they don’t say something …maybe “wrong” or “offensive”. I want to trust that this is a good place for us to interact and if I mention his certain needs, I personally am open to any questions or concerns you have. I would much rather that then being dismissed quickly —which I never think has a bad intention.

What the heck is Normal?

While there’s no “right” way to speak to people with different abilities and needs, when you tell me that your business only works with normal kids, it does sting. And I always hope I hear some form of self awareness after “shoot, maybe not normal but…you know what I mean” it’s an after thought but it helps :) My baby boy is my only kid and that’s my normal. 

Behaviours that you don’t understand

Some kids like my son have bizarre behaviours that draw the eye. Including big emotions and odd particularities, sounds or movements. We know as parents that it isn’t what you see with every kid. We know it draws attention and can be challenging but we ask that you have patience and try to see the world from our kiddos eyes. Sometimes you may suggest ways we “fix” their behaviour but please know we know the VERY best way to deal with this. My son may lose his mind if touched on his mouth or held still for too long by professionals and sometimes he requires a small part of his favourite song to be played or sang to him. It’s socially awkward when a doctor is asking me questions and I reply singing in his direction but I always know this will help him be more cooperative and keep him happy. Let the people that know lead the way and you can’t go wrong!

How old is your kid?

I’ve been dealing with this one a lot in daily conversation. When you do have a child with significant developmental delays, this is a sensitive question. I’m working on responding to this with a regular age as well as a quick mention of where he lies developmentally. Eighteen months, working on his crawling to standing independently and loves the word dada, kind of gives you an idea which kids he may have a lot in common with which is probably why you asked! Or so I hope. 

What is his syndrome?

You can ALWAYS ask this. It’s not a dirty secret, it’s human nature to notice the differences in our kids or the people we care for. Asking what that is like is asking what THEY are like. Because a syndrome often gives certain traits that become blurred with their own personality and characteristics, it is all one. Our kids have syndromes which makes that syndrome apart of our kids and who doesn’t love to talk about their kiddo? 

Overall, just remember that we are above all caring for humans we adore and for a lot of us, we have no shame discussing the things that not many people experience. Please don’t be afraid to ask questions or to learn from our kids because they teach us every day. My hope is this can help you create a safe place for parents and caregivers of folks with extra needs who may just need a pleasant interaction that day.

Thanks for your interest,

Have a great day!

-A mom of an amazing boy!

From "Tommy the Tummy Tube" to breastfeeding success: Candice Brown shares her journey with infant feeding and DYRK1A

By Candice Brown

Creating our Routine

Going Home. The words I had waited to say to my family that filled me with such relief. The numbers from the NICU would be behind me, no more monitoring the levels of spit up, no machines beeping during our attempted breast feeds, just me and my instincts. Which was enough…right?

I look back at the photos we took as we introduced Macklam to his home; a snap of Mack on his Grandma’s shoulder for the first time, a shot of his new uncle holding him, joining our busy full house. There were, however, no pictures of Travis and me rummaging around to find a makeshift IV pole to set up Macklam’s feeding pump, or of struggling to figure out how to anchor his new g-tube to his clothes in order to keep him from pulling it out. Being a great student my whole life, I had a small binder with medical jargon and diagrams sitting on the table. I was so thankful for this resource gifted from the nurses as we grappled through our first at home feeding.

The g-tube was a small medical device placed in his belly the week prior to assist with his eating. The NICU compared it to an earring, placed through the hole with a balloon keeping it inside. Two ports were on the surface: one resembling the plastic tab you pull off a beach ball and wrap your mouth around to fill it up with air. This port went directly to Macklam’s stomach, often giving us a glimpse of his stomach content. This would be where we would attach a straw like device with a blue port on the second end of it and a tab to secure it. It would twist into place, flexible enough to move with our little man. We were told to ensure it was secured to Mack’s stomach with a sticker or safety pinned to his clothes. The second port was used to insert medication with a special syringe. A third mechanism on the side allowed the balloon to be emptied inside his body. This kept the back of the earring secure and allowed us to refill it when needed. Once the straw was attached and secured to his clothing, we would warm my breast milk and pour it into a feeding bag which resembled an IV bag. The next step was referred to as “priming the line”. It required us to hang the bag and use gravity to force the milk through the tube and out the plastic tip, catching any drops that escaped in a cup placed on the ground. We would check for bubbles through the tube, so as not to fill his belly with unnecessary gas. Once the line was filled with milk, a tiny insecure lid was placed on the tip. We would hang the milk bag to a makeshift IV pole and attach the long thin tube filled with 10 mls of milk to his straw, plugged to his tube. We would place an oval shaped part of the tube coming out of the milk bag, referred to as the “cassette”, into the pump which resembled an old tape player. The machine would let out loud beeps as we prepared the math equation. How many minutes would we be feeding him? How many mls? Therefore our runtime will be 130. The math equations were in the later pages of the manual, notes in the margins. Stickies littered the first page of my manual from our pediatrician. Each pound required a set amount of milk in mls. I needed to keep eyes on the increments to not miss the opportunity to feed him the correct amount of milk. After 90 minutes were finished, the pump would beep loudly at us and I would turn it off and remove all the items as swiftly as I had put them together. It was like creating a small factory that would feed our child. As I sat watching the milk pump from the bag, I waited for his belly to fill.

His feeding schedule was every three hours for a 90 minute period and later 60 minutes, using his Infinity Pump. We decided we would split the night shifts with Travis staying up for the first two feeds and me waking up for the 3am and 6am feeds. Mack’s new soft sleep sack had a thick medical tube coming out the bottom, allowing us access to attach and detach during the night without disturbing him.

It all sounded convenient and simple and some of my friends with babies exclaimed “how incredible to have your baby sleep through the night at one month since he’s always full!” I would smile and joke “who knew this would be so much easier than typical parenthood!”

In reality, the tube was easily the most emotional chapter of motherhood for me. The one thing Macklam required to live was food. My breasts would fill with milk for him, my body was responding to his needs, flavoring my milk to match foods I had carefully selected during the day. I would pump my milk for him, watching him sleep. I was acutely aware that he couldn’t taste the milk I was providing and that we weren’t sharing an important moment that most mother’s get to share: feeding.

The night required a series of alarms on my phone. I would fall asleep at 9pm, then an alarm sounded at 1am to pump, then an alarm at 3am to prepare his bag of milk and attach it to his tube, sleep until the pump alarm woke me at 4am, remove the milk bag, clean it, put it away, go back to sleep and wake up at 6am to do it all over again. Our days were filled with the same routine, every three hours.

A Mother’s Love

My mom, Julie, became my life line at this time. Mom has always been my biggest cheerleader and best friend. I’ve idolized and admired my mom’s ability to overcome the challenges of teenage marriage and parenthood, challenging herself further to jump into a male dominated career path at 28 . Until meeting Travis, I was sure she would be the only person that I could be my best and worst self with. My mom has always been my safest place; warm, reflective and fiercely protective. She has never hesitated to choose us over anyone in her life. My brother and I have always looked up to her strength and unwavering love for us. My mom has always regarded us with respect and admiration, ensuring our confidence was built in realism about our abilities and strengths. My mother’s heart is in her kitchen, a small place that few get invited to. To create another person who would own a seat at that table felt like an honour. The unending hope and determination I’ve had for encouraging Mack to eat orally stems straight from a hope that he can enjoy my mother’s cooking and recipes she’s passed on to me.

I consider it a normal rite of passage for new moms to have their mothers guide them into their own motherhood through stories of similar scenarios and encouragement. Sharing our feeding routine did not feel at all as expected: I felt deep resentment and failure when I looked at the pump and medical equipment. I felt like I was doing motherhood wrong because it didn’t look like how my mom had fed me nor how I had planned to feed my baby.

My mom had often described how early motherhood looked for her. My brother and I would often wake up crying at one month old and she would prepare formula and heat it in a pot on the stove in our trailer. We would fall asleep eating and she would place us back in our crib. My reality would look different. On the off chance Mack woke up in the middle of the night, I was required to get a lot more creative putting him back to sleep. Feeding to sleep wasn’t an option so my husband and I had to go to other standbys such as rocking, swaying, shushing, bouncing on a ball etc. Nighttime feeding is a feat for any new parent but also a rite of passage. Imagine a 2am wake up, 45 minutes of creative parenting aerobics and your phone alarm going off, catching it with one hand. The baby didn’t wake! Thank goodness! The alarm means it’s time for a feed. Which means getting your kiddo comfy in the bassinet, preparing milk and getting the tubes all attached to him without him waking. Imagine the typical parenting moment of putting baby down in their bassinet without waking them, the fear with each movement, not wanting to disturb them and holding your breath. Imagine now that you have to go back to this sleeping baby and attach a tube to another tube attached to his stomach...without waking them. And then pressing loud buttons with no sound control...and not waking him. And finally, having the alarm go off on the pump after the feed finished which...inevitably would wake the baby.

I grew up near Mt. Washington, a well known Canadian skiing mountain. Though I was never brave enough to explore the slopes, I learned that each route was categorized by difficulty: from bunny hill to black diamond. I used to tell Travis I would have loved to start parenting on a bunny hill, but we managed to get ourselves a black diamond. Yes, the risks are terrifying and pain staking, but the views are exquisite.

The mornings were chaotic as I shifted our feeding equipment from our downstairs make-shift IV pole, an easel that took up half the living room of our small suite, to the upstairs set up. I would haul up a bag of supplies and a small insulated bag full of my milk bottles, measured to exact amounts.

Lactation consultants assisted with our breast feeding attempts and had told me to keep Mack on me as much as I could, close and naked if possible. This was an impossibility. The fluidity and flexibility of motherhood was replaced by a military schedule around the clock. I would hold Mack and enjoy his warmness on my chest…until my phone buzzed to pump. I would then pass Mack to my mom, placing him on her chest the same way, telling myself he would be just as comfortable. I would then pump, measure my milk, store my milk, clean the pumping equipment. I would rush back to Mack who would be sleeping soundly on my mom. Should I disturb him? I would prepare the medical equipment for the next feed. Warm the milk, run the line, clamp, cap, attach the machine, set up the time on the pump. Then I would need to reach under Mack and bring him to his change pad to put in the tube that would feed his milk from the pump to his g-tube and stomach. He would often cry as he was jostled awake. I would wrap him back up in his swaddle and try to get him comfortable while he was attached to his feeding line. He would root and suck on his soother, imitating feeding. My heart broke each time, often crying while I felt so close but also so far away, unable to physically handle attempting to breastfeed while tubes were tied around us both.

For some moms, they are able to master breastfeeding in the early months and make it look effortless. For me, I was still new, having only done 1-2 a day in the three months of Mack’s life. In the mornings, we would do a breastfeed “attempt”. I always referred to it as an attempt, thinking of the paperwork from the NICU that our occupational therapist wrote. It never felt like a real way to feed Mack but more like something to give him better chances at oral development and a way to make me feel I was at least trying. I was dogged about these attempts. Mack was unable to latch, coordinate his suck, swallow, breathe and was found in the NICU to slightly aspirate if given full rein to feed. Breastfeeding was my time to see where his feeding abilities were each day, to access, to hope and to, inevitably, fall apart when things had not improved. Each morning, I woke up wondering if today he would learn to eat. Some days, Travos or Mom would suggest taking a break and I would reply in a small determined voice that I would not give up on him. I refused to turn to the machinery running my son’s feeding and let it win. I believed he could learn.

Each breastfeed attempt required a nipple shield and a lot of patience. Mack would eagerly attach to the nipple shield, often pulling it off several times through our “feed”. I would place Mack in his bassinet or with my mom to reattach the nipple shield, which required a thorough cleaning and reapplication with water. I would let him suck as long as I could, from six to ten sucks, pacing him to ensure he was breathing. If I missed his subtle cues that he had taken in too much milk to handle, he would hold his breath and let out a tiny squeal. I knew from the NICU that, without monitoring, this was a sign of danger and lowering oxygen levels. Mack’s improvements were frustratingly slow but were improvements nonetheless.

Throughout the day, my mom’s arms became the constant calm for Mack. She held him while I whirled around in the daily activities, appointments and chores. I still feel broken thinking about this time, like I wasn’t present for him in those early days, so caught up in the feeding struggle and whisked away for appointment calls. When you see your son warm and cozy somewhere you trust, it makes sense to continue to do the difficult chores, tasks and correspondence that goes with special needs parenting while my mom got to enjoy holding him, smelling him and listening to his breathing. I knew the safety of my mom’s love and I trusted her to keep him safe while I continued the job of resource shopping, e-mailing and zoom meeting for Mack’s appointments. On top of this, I carried a burden of guilt that my mom was becoming such a required help since the tube and his complications had so many more things to worry about than what I expected of motherhood. I felt codependent and unable to handle motherhood on my own. Special needs parents need to be everything; a receptionist, a doctor, a nurse, a therapist. I was learning this role at hyper-speed with the enthusiasm of an overachiever. My phone was full of notes I thumbed through while holding Mack. What do I do next? Which calls and appointments? Can I fit in a second breastfeed with him tomorrow? I couldn’t slow down, couldn’t stop. If I did, he wouldn’t succeed. I know now that this is a very common feeling for moms and special needs moms especially. We often forget that breaking for our own mental health makes us better moms.

Bottles and Battlecries

By the second month, I bought a few different types of bottles. I had the urge to start using them. The struggle with the nipple shield and the difficulty with learning to breastfeed made me want to use them. For most moms, this decision is a far less complicated one. Perhaps there’s a sense of loss in deciding to discontinue breastfeeding but generally, it’s simple. Switch boob for nipple. For me, I had my own brain to battle. I had paper evidence that bottles would harm my child. The OT from Children’s Hospital printed a feeding report card when we left the NICU with bold red letters reading “DO NOT BOTTLE FEED”. The trauma from my experiences in the NICU plagued me. Anytime I picked up a bottle, I would feel the ache in my mama heart remembering our experience during our feed study and Mack’s terrified face as he drank without breathing. I would relive the nurses running in to resuscitate Mack while he drown himself in milk. Each morning, I would take out the report card and finger over the words. “DO NOT BOTTLE FEED”. I would grit my teeth. I knew my pacing and my own knowledge of how Macklam eats would keep him safe. But this OT, this hospital, did not trust that. And what the NICU taught me was that I couldn’t trust my instincts, only the opinions of medical professionals. So I postponed. I would bring a bottle upstairs, clean it, prepare it and then put it away in the evening. When my mom would question me if I planned to ever use the bottle, I would get defensive. I would pick fights with my husband about it. Because on the inside, I was in a battle with my own mind. My instincts told me this was as safe as breastfeeding and would ease some stresses but my brain wrestled with the idea of disobeying a rule. Overachiever, A student, Goody goody, didn’t drink til I was of age...why would I disobey?

The first day I used the bottle, my throat was sore from holding back tears. Mack reached for the nipple excitedly and loved the adventure of bottling. My fears slowly eroded as I could clearly see him drink the exact same as on the breast. He was safe. My baby is safe. I know what keeps my baby safe. I continued with bottle attempts each day for a week, making slow progress. I needed complete attention and listening to Mack’s cues to know if he was breathing properly or at all. The TV needed to be off, the room quiet and everyone needed to be silent. His sounds were so slight but I was well-equipped with a list of possible aspiration signs. Mack eventually took a full bottle with a lot of pacing, never letting him go so far as to squeal and hold his breath. I felt so full of hope for him but near the end, his old patterns of losing his breath and gasping for air threw me off. Was he ready for this? I felt so unqualified to make the decision to continue his feeds with bottles. I was aching to have him feed orally but something about his sounds made me feel uneasy. I emailed our local OT and speech pathologist. They had agreed that my arguments for bottling made sense and listened to his paced eating over zoom, giving me a thumbs up. I wrote in the email that I could hear wetness in his throat. I knew this was one of the aspiration signs, I knew this was something to pay attention to. I didn’t know how hard the email back would hit me: “We know you don’t want to hear this but he might be aspirating and we want to keep him safe”. Safe. My baby needed to be kept safe from me. He needed to be kept away from me because I over eagerly am putting him in danger. My selfishness to have his tube taken out, to get him feeding orally was putting my child at risk. The day I received that email was devastating. I cried so long that I missed calls, so long that I missed my alarm to pump…there was literally no time in my life for this. My mom who had observed for the month, quietly, taking whatever I assigned her, stood up, Mack in her arms. His little head rose and fell on her arm as she lifted him toward me.

“Hold your baby.”

I shook my head. Pumping, phone calls, laundry...I can’t. There’s no time for this. She placed Mack in my arms, his head making its way on my chest, his body instinctively curling around my breast. Take your baby. She wrapped his warm blanket around us both. And I cried without moving. I closed my eyes and felt his small hand twitch on my chest.

That was the best thing my mom ever did for me. With those three words she gave me permission to stop. Permission to turn off my phone’s alarms. Permission to forget the plastic and medical grade equipment, permission to be late on pumping, be late on anything. I held Mack and cried. His little warm body snuggled on my chest comfortably, he hadn’t forgotten me. I’m his mom. I’ll always be his mom.

That day changed a lot of things for me. I contacted the lactation consultant and started working on the breastfeeding, not to get him feeding orally, but to try to bond better with Mack, to remind him where his milk is coming from: a mom that loves him unendingly and will do anything for him. My mom took up the running around because it still needed to be done. She gave me the gift of a breath between moments that required me to step away from Mack. I pumped while petting his face, I held him every second I could and my mood and emotions seemed to feel more secure. I mastered the road trip feeds in the back of the vehicle going to appointments. I cleaned and kept his bags in a cooler full of ice, I pumped in the back of the vehicle while his feed ran. We were well oiled and strong, a team of three: Mack, me and mom. A part of me felt inadequate some days relying on her so much but it gave me moments to breathe and enjoy Macklam’s growth.

The Tongue and Lip Tie

I reached out to Facebook groups and found a tube feeding caregiver’s group that gave me immense strength. I didn’t feel alone. I felt strong and lucky to have such a support system right now. It was on this group that I posted photos of Mack at three months, giving me a gummy smile and I received a message from a stranger. Was I aware that Mack had a fairly severe lip tie? My first reaction was to scoff. We were seen by how many specialists? Obviously he didn’t have these ties otherwise they would have pointed it out. But it weighed on me for the day. I reached out to the OT from Children’s hospital, our feeding team, the Lactation Consultant. The LC responded immediately “I was thinking Zebras, not horses” she wrote. Apparently a lot of Mack’s issues with feeding could be rooted back to struggles with a lip and tongue tie.

Like most things I learn as a special needs mom, I took this idea and ran. I joined a local group for tongue and lip ties, I googled, I researched. I found a pamphlet with 15+ symptoms of tongue and lip ties most of which Mack was struggling with currently. Mack had learned a lot in his three months, finally coordinating his suck swallow and breath but still struggling with latch and milk transfer. I was aware that his coordination was likely related to DYRK 1A, that a lot of his feeding troubles could be related to by other parents on the DYRK 1A caregivers Facebook group. The idea that a tongue and lip tie revision could make things easier for Mack to learn gave me a bit of hope but the procedure felt more like a last ditch effort.

Two days before the procedure, our breastfeeding attempts took a dramatic step in the right direction. Mack was able to take 10 full mls of milk and was now coordinating his breathing enough to stay on the breast for over 5 minutes. It was small strides to some but huge for us! That night I debated if going through with the procedure would be in his best interest. I feared the trauma of a painful surgery for a three month old. We agreed that we needed to give him every chance with his oral development and that this could be the difference between breastfeeding “attempts” and “feeds”.

The specialized dentist office was small enough that the stroller barely fit in the room with all of us. Mack’s mouth was assessed thoroughly with notes on all of his feeding issues which took up most of the margins of the form we had filled out. The dentist’s main concern was that we had tried everything up until this point. I explained about his g-tube and the dentist looked confused. He had never met a baby with a feeding tube and informed me this may not be thwart fixing Mack’s eating issues. I smiled patiently. I wasn’t expecting a miracle. This choice was a last ditch effort, a response to medical professionals' constant reminders that Mack may never speak or develop orally due to his syndrome. My doubts were loud, as I sat in the dental office. What if this was a mistake? What if cutting his tongue and lip was maiming my baby without cause?

The procedure lasted all of two minutes, the dental assistant showing us the small board they would swaddle him to before we were whisked out of the room. My stomach was in knots, my throat was burning from tears held inward. I thumbed through the pamphlet in the bathroom around the corner, “nursing is the best pain relief for your baby after the procedure”. I bit my lip, tears welling in my eyes. That wasn’t possible but I did prepare a bottle of my breast milk. Where would be a safe place to feed him? Where I could hear his sounds? As I pondered this, I walked out of the bathroom to find my husband gesturing that they were finished. I reached for the bottle in the bag and found nothing. Where did it go? My dear husband, who had been by my side in NICU but had missed a substantial part of this feeding journey due to his work schedule, looked up at me innocently, informing me he handed the bottle to the assistant when asked. My heart raced. Safe. Someone else bottle feeding my baby is NOT safe. They don’t know him. They don’t know his cues and sounds. I rushed in to find the dentist upending the bottle while he talked to us. Macklam’s eyes had tears but I couldn’t hear his sounds due to the loud portable air conditioner. I grabbed the bottle from the dentist. I took it away, tears rushing to the surface, my heart pounding in my ears like after a hard run. The dentists’ eyes widened, Travis’ mouth gaped open. I could see guilt and fear in Travis’ eyes. He forgot that Mack could not drink straight from a bottle without my supervision. I checked Mack and his breathing was normal. He was groggy and cried out, his mouth swollen. I put him in the stroller, my hands shaking. He’s safe. My baby is safe.

Healing was difficult. Multiple times a day, we were required to rub Mack’s sore mouth and re-open the site. The day after surgery, I prepped the nipple shield for a breastfeeding attempt. My well meaning mother grimaced. Did I really want to do this? Should I give him the day? The dentist had suggested nursing immediately after surgery for pain relief and I was determined to find a way. The first few days of breastfeeding attempts were a disaster. Mack wanted nothing to do with my breast, veering away as though my nipple would cut his mouth again. I was devastated. The words oral aversion were rooted in my brain and I was terrified that this was it for our oral feeds. I wondered if the NICU knew something I didn’t, not mentioning his tongue and lip tie. Do these procedures cause permanent harm? Developmentally, Mack refused to bring toys or his hands to his mouth. I sat in a pit of regret. What have I done?

The night time was worse. Mack would wake up in pain, screaming. We would have to keep him attached to his pump while he ate but his fussiness meant moving him around the chords, ensuring he doesn’t fuss so hard that he pulls his g-tube out of his body. His crying jags would go on most of the night, with him falling asleep on and off on my chest. He would wake himself up and remember the pain in his mouth, fussing and crying. His regurgitation meant that each crying jag would lead to massive spit ups and projectile vomiting. Face clothes piled up next to our rocking chair. My arms ached from parent aerobics, my brain ached from regret and fear, and my heart ached everytime Mack cried out in pain. What had I done?

By Day 3, Exhausted by the work of healing, Mack and I needed a moment of joy. I decided to bring him into the bath, his happy place, to let us both recover after a particularly difficult night. It was quiet and warm, the only time we could have skin to skin in a busy house. Mack laughed and kicked, content and happy. As we usually did in the bath, I would give him a chance to feed from my breast, never to any avail but just to remind my baby boy that my breasts were still here for him when he was ready. There was no technique or anything different that first day but Mack latched. For the first time, I felt him drink bare breast. It was a magical moment, calm and quiet, just us. I knew this procedure was the right choice for him. And this was his thank you.

Goodbye Tommy the Tummy Tube

The weeks after, I felt like we were sprinting to the finish line with feeding. I bought a baby scale and micromanaged every last milliliter of milk. Every feed, he was weighed before and after, times and weights on a white board next to the scale. Within three weeks, we managed to get his milk intake high enough to have the recommended amount of milk per feed and day. I didn’t follow my baby’s cues the way I imagined I would. Instead, had him clocked to be put to the breast every two hours, weighing him before and after, methodically measuring and calculating to ensure he would gain weight. Some feeds were rough as we found our footing, an hour of latching and unlatching, weighing and trying again in a half hour. My husband and mom used the term exhausting to describe my feeding routine. But I was determined and Mack was eager. He loved his nursing time with his mama.

After about a month, I was able to pry myself away from the scale and breathe. I know you Mack, I know what you need now. I learned to trust and read him. I feel so privileged to have been given the chance to see my baby feed orally, as I know not many tube fed babies ever can. I feel immense pride in the accomplishment of finding a way to trust what Mack needs. For some moms this might be the need FOR a tube, for Mack and me, it was trusting that he would learn to drink and eat for himself in time. Though I still struggle with trusting Mack’s timing and feeling impatience setting in, this first accomplishment often reminds me to trust that his mind and body will move forward when it’s the right time.

I became intently focused on getting the g-tube out of his stomach. It became a frustration, something I cursed daily. Mack’s struggles with tummy time? The tube was bothering him. Mack’s consistent spit ups? Irritation from his tube. Laundry load? Due to his leakage getting on his clothes. Several times a day, I would sop up the leakage which would grow slimy and sometimes bloody with granulation tissue. I would sometimes find myself crying with anger. Why did I do this to him? I knew, logically, Mack was unable to eat when he was born and the tube saved his life! But emotionally? I felt like I had harmed Macklam and caused him more pain than needed. His granulation tissue would grow and bleed. The red wet tissue looked sore and angry. I ached for the tube to be removed.

At a week of fully orally feeding, I phoned BC Children’s Hospital to ask about the removal. I took notes intensely. Give me any hoops and I will jump through them. Three months of pure oral feeds and proving that he was gaining weight. I worked vigilantly with him to meet these requirements and approached the hospital in early December, eager and proud. Goodbye Tommy the Tube!

Mack and I entered the hospital that day with boxes of supplies and premie clothes for donation. Mom and I had worked hard to create several packs of homemade tubie pads, used to soak up leakage around a gtube, for parents who were celebrating their holiday with a new Tommy the Tube of their own. We came early and I snuck up to the second floor, in the familiar elevator that I had gone up for a month while we stayed in the NICU. I remembered living in their small hospital bed, Travis sleeping on their couch. I remembered the beeps, the voices, the heavy door opening and closing during the night as moms and babies were admitted. The elevator door opened to the desk we passed by every day. I delivered the donations and took a deep breath as the familiar smells of these halls quickened my pulse. I looked down at Mack with the irrational feeling they would take him back. I had to leave. I had to get him out of here. For a split moment, my instincts felt like I was in a horror movie, going back to the haunted house the day after when the sun is out and the dark corners no longer house ghosts. I turned to the elevator without a glance back.

We dropped to the basement level where general surgery would be removing Tommy the Tube. I could barely hold back my excitement, sharing our story with anyone who would listen.

Christine the g-tube nurse was the professional who would remove the tube and treat his stomach hole with silver nitrate to encourage natural healing. She assured me he would likely heal well since the tube wasn’t in for very long and was so small. “There will be leakage,” she said casually. I nodded. We’ve handled that. We left that day with Tommy the Tube in a small plastic bag and my baby no longer carrying around medical equipment in his body. I felt triumphant. Our first challenge? Aced! Mack and I! The dream team! The g-tube nurse waved as we left “Congratulations and hopefully I won’t see you again!”

This would turn out to not be true. Christine, the g-tube nurse, and I would call, email and have many appointments to close Mack’s stomach hole. The next four months would be sobering. Much like all things with a special needs kiddo, each win leads to more challenges. Tommy the Tube was out but Huey the Hole was about to become the bane of my existence.

(to be continued…)

Meeting Macklam: A Mother’s Perspective on COVID, NICU and Diagnosis

Author: Candice Brown

This month, we have the opportunity to hear Candice Brown’s birth story. She is a first-time mom to son Macklam who is currently 9+ months and was born during the pandemic. She shares her heart-felt journey — living 2 hrs away from home during COVID lockdown, feeding difficulties in the NICU and processing the DYRK1A diagnosis.

Note: Emotional content may elicit strong feelings. Read time ~30 minutes.

My Birth Plan Goes Out the Window

I reached over my third trimester bump to pick up the remaining blue and white plates from the living room. The balloons had begun to unstick and I smiled at the success that was my first baby shower. We were surrounded by love and support and best wishes for my soon to be little boy. To Instagram and Facebook, it was the same as every other shower; blue and white decorations, smiling faces, a cute maternity top and sparkly gifts for a nervous new mom who had no idea what was coming. To my mom and husband, they watched a nervous new mom clench her jaw at each mention of a “happy and healthy delivery and baby” because, for the first time in my life, I questioned what “healthy” means and revelled in the fear of the phone call received the night before. It also didn’t account for the future understanding of “healthy” based on an impending pandemic which, at the time, still seemed to only reside in Asia.

When I answered the call the night prior, my midwife’s tone was new; one of caution and pauses to read my tone. She informed me that my results for the growth ultrasound were irregular and the most shocking numbers she had ever seen. Our baby Mack was measuring under the 0 percentile in his femur length, a sign of a genetic disorder. As well, the scan showed a high amniotic fluid level and a swollen kidney. Midwife recommended we go to BC Children’s Hospital, two hours away in Vancouver to get more scans done.

The two days of scans and results came in a blur with snapshots etched in my memory. I remember our optimistic smiles to one another as my partner and I entered the hospital. I remember the ‘discovery’ of a heart abnormality and my husband's eyes brimming with tears at the suggestion that these signs of a genetic disorder could have our little man incompatible with life. I remember feeling his hand squeezing mine as they punctured my stomach with a giant needle for the amnio. I remember telling people that my partner and I are a fortress and our baby will be safe and loved no matter what. And those people responding with phrases that made me uncomfortable “you’re such a hero” “you’re an inspiration to us all”.

Was I a hero? Coping with the reality of your kid being different and knowing you will have challenges other parents don’t, does not make you feel like a hero. Heroes aren’t depicted feeling scared and alone, consistently worrying they won’t be enough. I had to remind myself in those days heroes don’t start out as heroes, they have lessons and challenges to overcome first. So there was still hope.

Coming home after these days, my birth plan needed to be tipped out and started again. Goodbye birthing suite with a midwife, holistic forms of pain relief, coming home the day of Mack’s birth. The things I feared most would now become my life until I could bring my baby boy home with me: doctors, needles, medicine and machines. The doctor recommended relocating to Vancouver, 2 hours away, in March 2020. The same month our province went into Covid-19 shut down. With this came another plan tipped out and started a new: the weekly medical appointments attended by my partner or mom? I would need to attend solo. The park nearby where I planned to waddle around keeping active? Blocked off to the public. I was mostly barricaded in a house that wasn’t home, fearing the unknown germs outside the door. I had read stories about women isolated from their newborns due to contracting Covid-19 and this fear had me paranoid.

Following our appointments, the amnio results came in slower than expected due to Covid-19. Out of the four tests, three came back genetically average. My family smiled and hugged me but I felt a constant knot of fear. I started to have nightmares about the exome testing, the one test that we were told likely wasn’t going to come back with anything scary.

As my due date got closer, I was itching to meet Macklam. His goofy personality was so apparent from my belly; kicking when I played kids music and bucking his dad whenever we cuddled. I needed to know my little man, needed to dress him in his cute little clothes and wrap him in the flannel blankets I was packing and unpacking in the baby go bag. It was about once a day I would get a wave of fear; would my baby make it out safely? Would I? Would Mack be breathing? I thought of every worst case scenario and tried to push them away. My heart broke at the realization that my mom was no longer welcome in the birth room as I could only have one support person. I cried when she left the Air BNB, feeling the shift from being someone’s baby to someone’s mom and the sheer responsibility of becoming this baby’s world.

Ready or Not, Time to Meet Baby

We walked into Women’s Hospital full of nerves and excitement. My cervix was completely closed (which feels only mildly insulting) and my brain was wrapped around being induced “for our safety” and how that would feel. My water broke in the evening and once the show began, it moved fast. From 8pm to 3am, I had every birthing term thrown at me that I had read in the chapters I grimaced through of my pregnancy books. Cervical check, dilation, contractions and pushing were all things I was ready for. The epidural, IV, oxytocin drip, low baby heart rate, infection, fever and having blood taken while forceps were assisting my birth were not expected. My most painful memory, however, was not the contractions or forceps but, rather, the nurse who stood at the door thumbing through my file and reading out each terrifying thing we had learned in the last few months about our baby and possible signs of abnormalities. Between physical painful contractions, she seemed to ruin the peace in-between by reading out lines each doctor had said to me before including genetic abnormality possibilities, complications, defects, smallness. My heart and body ached.

When Macklam came into the world, I was trying to zone out the 20 or so medical staff milling around, and the two NICU beds with full medical equipment. Just make it through this and he will be here. Mack’s presence brought a hush across the room. He came out with no sound. I took a breath of relief while everyone tensed. I somehow knew he was breathing and healthy. I felt it.

When Mack was put into my arms, I was excited but felt oddly disconnected from him. Who are you stranger? How were you my roommate for so long and yet so unfamiliar? The immediate bonding and love that I had heard so much about seemed to take longer than I thought. Now, I believe it was a bit of self protection assuming my baby might not make it home, having the whirlwind of words from staff hanging in the air “could not be compatible with life”.

On the second day of my son’s life, the intern for genetics came in, masked and gloved, with her phone. An aging man spoke in and out as the signal cut out. What I could gather was that he was a doctor of genetics. We had heard his voice the day of Mack’s birth saying he appeared genetically average, apart from a club toe and recessed chin. Now this same man started his speech with “unfortunately” and took the world's longest pause.

Exome Test Results Come In & Feeding Difficulties Ramp Up

“We got the results of your exome test and I am sorry to say, the results showed a deletion…” I stared at Mack as he looked into the air around him, adjusting to life out of my belly. He would never remember this moment but I always would. I took notes to absorb everything the geneticist said which was…very little. A rare chromosomal disorder which has only 200 people in the world that are diagnosed.

Mine and my partner’s digesting of the diagnosis came at different times but followed a similar pattern. Our first few days, we were able to digest the tip of the iceberg “it’s okay if he can’t read very well or struggles in school”. On the third day, my mom came to visit outside the hospital, unable to meet her baby grandson in person. She was eager to share in the research she had done on DYRK1A, explaining how some of his physical attributes matched the diagnosis. I remember her using the term “special needs”a lot and cringing each time. I was finding adjectives to describe Mack on my own time in the first week of his life: dramatic, sweet, goofy and special needs just felt like an impossibility.

With each passing day, I began realizing my feeding journey was not the same as other moms who had offered their support. Day 1, we were told Mack was struggling to suck due to his high palate and recessed chin. Day 2, a nurse who prided herself on bottling techniques asked our permission to try to feed him with formula orally while my milk came in. I agreed and watched her explain several ways of getting him to latch. Milk poured out of his mouth and she finally started pacing him as his breathing would stop while drinking. She was confused and turned to me to explain his behaviour. This became a theme throughout the NICU stay. I felt like they were asking me why he couldn’t take his food and I was completely useless, left with a feeling of anger towards them for not having the answers for me.

By day 3, it was established that Macklam had a weak suck (after working with him with a soother), regurgitation to the point of puking up his full meal and no suck swallow breath coordination. We were told an occupational therapist would come in if necessary to assess his eating.

The tube feeds continued while I pumped every 3 hours to get my breasts working. I woke up on night 3 shaking uncontrollably and, after a 4 hour urgent care visit, learned that was how my milk coming in looked in my body. Once those few drops of milk started to come in, I became obsessed with providing something for my baby, the only thing I had full control of. I wrote giant letters on our white board “BREAST MILK ONLY” and checked each syringe of milk to ensure it wasn’t formula. I have never been anti-formula as I was raised on it but the idea that I could sustain my baby in some way became paramount to the start of my self confidence as a mom. My body had an unfamiliar ache to hold my baby but often the wires and tube would stop me. I would put my hand over his head and pet him, waiting for a nurse to help me unravel each chord so that it didn’t set off the machines to place him on my chest. Many nights when Mack was crying and my husband and I tried to soothe him, we were left a ball of anxiety and sadness, caught up in chords, feeling useless and wanting to be home.

The days consisted of endless professionals coming into the room with news or updates, appointments and pop ins. It was an exhausting and unpredictable schedule.

Breastfeeding attempts with the lactation consultant were both a joy and a terror. I used a nipple shield to entice Mack on to the breast. His latch was weak and milk transfer was impossible at the start. The breast shield would slip off easily without the latch and I always felt placated when a nurse would congratulate me when he was on the breast. I knew it looked like he was drinking but, in fact, he wasn’t. We discovered his response to milk in his throat was one of panic, he would pool the milk (suck, suck, suck) then it would begin to drip down his throat and he would panic, holding his breath. We would have to wait for it to pass, hoping he catches his breath again. Twice in our NICU stay, his spit ups would lead him to breath hold and the suction tool was required to help him get his breath back.

By the time Deb, the Occupational Therapist, was called, I had found a groove with Macklam on my breast. Twice a day I would work with Mack to attempt breastfeeding. It was the most exciting and nerve wracking part of my day. Nipple shield, breast feeding pillow, organizing the hold, holding his tiny head in my hand, now weighing less than when he was born. He would partially latch and suck enough to get milk in the shield, then I would pace his sucking. One, two, three, I would pull him off to take a breath. I simulated the coordination he needed. We would do this for 15-20 minutes, watching the machine dip from 100 to 95. He would come off the breast and recover his breathing. It felt like simulating something so natural but so impossible for my little guy. It made my heart ache and I would cry after, feeling like this was a game of pretend and Macklam would never feed. When OT arrived, I was elated. I imagined using the bottle to pace the way I had on the breast would be much easier since we could choose the right nipple and control the milk flow consistency. Our OT arrived full of new words; side lying, premie nipple and Dr. Browns. She was pleased with his eagerness for milk, letting Mack lead the feed. The nipple went in and he sucked; one, two, three, four, five, six…my heart raced. Nope, nope. She should know, 6 is enough. But she’s the expert. The machine binged and she looked up, shocked. She pulled the nipple out and he squealed and held his breath. I explained his pattern and she didn’t respond to me. My heart was broken as her hopeful face turned sour. She looked up at me and I saw a familiar expression I hadn’t placed yet. Pity maybe? She popped in with a write up; an OT report card. She gave me a nugget of hope: the next visit she would find the answer for his feeding issues. I fervently searched the DYRK1A site for answers and suggestions.

The first video that popped up on the group feed was for a Gofundme for DYRK. I had NO clue what to expect or how different each person’s experiences are. The video had an adorable kiddo walking (oh my gosh amazing!) and playing, full of joy. My heart swelled and I smiled, this would be Mack! It panned to a mom and dad and my heart sank. Their eyes were red and sullen. They said the words that would circle my brain on repeat “I went from hoping and preparing for my little girl to get married to now preparing for our eventual death and who will take care of her”. Smack. Reality. Mack may not ever be independent. Smack. He may never leave our home. Smack. He may never eat unassisted. Smack. I imagined the couples with sick kids, asking for money to help them in their unfair, awful journey. Were we those parents? Will we be those parents? Would an email go out in the office asking for financial assistance…please go and fund ME because my life has taken an unfortunate turn to where I will need to be five times the parent…always… I don’t remember the decline that afternoon but I remember silently crying in the hospital bed and a nurse coming in and calling a social worker. My whole life has been a very very blessed one with very few times I have felt that kind of dark pull. And that day, that nurse saved me from the dark pull of the reality of our diagnosis and the biggest fears you can imagine when you’re holding a tiny little innocent babe.

When Deb came that afternoon, I had given myself time to grieve and was ready for hope: new bottles, nipples, fresh warm milk straight from the breast, my heart in my chest, holding my baby’s hand while he looked up at me excitedly “Milk?” Yes baby boy, milk made straight from mama. It was a total of 5 minutes of Deb bottling and two dips in the machine before she turned the bottle up and looked at me. “I don’t think it’ll be safe for you to bottle feed him without a swallow study”. My husband was behind me, holding my shoulders and I felt his hands go limp. We were explained why a swallow study was necessary, to ensure he would be feeding safely and not aspirating.

The Only Way to Leave the NICU was Surgery

The last week of the NICU stay went by rapidly. After our first swallow study, a second came. My partner and I went back and forth requiring the other person to be a single fortress, holding up the mud that we became on rough days. We left the NICU beds for a hotel nearby to get a bit more rest and to recover from the toll of all the doctor’s appointments. We enjoyed the hello each morning with Mack and watched him wake up, stretch, hands behind the back of his head in that cute way he does. We gave him baths with the NICU scentless soap and I started to dream of all the baby things stored in his little nursery that I was excited to use. We battled his “regurg” depending on the nurse on staff. Some were moms and if he had a small wet spot under him they declare it “normal” and not log it. But there were other nurses who would guesstimate the amount and log it in his giant file. I hated those nurses. They constantly tsked at his 5 ml spit ups and would state things like “he doesn’t seem to tolerate this feed speed” or “there are medications for regurgitation that I’ll make a note for the doctors to talk to you about”. Our go bag had 4 swaddling clothes and burp clothes that I would, on good days with less spit up, wrap Mack up in, feeling the flannel touch his skin. I loathed the mornings when I would come into the NICU and find the flannel blankets folded up in a bag with a sticker that said “SOILED”. It began to represent the hope of going home. Each time I wondered “will this swaddle stay clean for the ride home?” And then nope, “soiled”. I would clean them and we would start again. Day after day. I continued two breastfeed “attempts” a day. I started to dream about the amount of sucks before he needed breath. I dreamed he was on my chest in the hotel, waking up to feeling lonely and missing him. I would wake up every three hours for pumping in the hotel, quietly putting my bottles in the hotel fridge, waking up and packing them up for the NICU. We were on a consistent three hour schedule of 90 minute tube feeds. My husband and I became frustrated with nursing staff running late and adjusting his schedule by an hour here, an hour there. I started discussing with him what an NG insertion would be like at home. We came to terms with the fact that likely we would need to ween him from home. How long would that take? A month maybe? Maybe one NG tube insertion? Watching the nose tube be inserted into Mack’s small nostrils was hard enough, the idea of doing it ourselves felt impossible but if that was our option to go home, I was willing to figure it out.

Our lower GI study, the second feed study, was deemed to be the turning point for Mack. They explained if he isn’t aspirating, they would be able to find a nipple that worked for him and get us feeding him for our way home. We were excited at the prospect but cautiously optimistic. Nothing went the way we thought in NICU. I got up the courage to sit in on the feed study, nervously ringing my hands out as we wheeled him in. I had the urge to hold him the whole way down but, for hospital reasons, he remained in his bed, hungry and irritable. The GI study was conducted using a giant machine that took up the whole room and contained a seat made for a 5 year old, hard and large. Mack was far too small and required blankets and swaddles to make him fit. The OT upended a bottle into Mack’s mouth and they recorded. One, two, three, four, five, six…..seven, eight….ten, eleven, twelve…my mouth hung open. He wasn’t breathing. The machine was delayed, always was but I knew he wasn’t breathing…the machine started to beep and they continued. twenty…twenty one…his squeal came through the milk and I started to cry. I was behind the plastic, helpless, as I watched staff suction out his mouth. What the heck is this place? Where is the exit?

It’s hard to explain to someone that has never felt the feeling of being trapped in a medical capacity. Wanting to leave but being told it is in your best interest and your baby’s interest to stay.

The results of the study showed a ‘slight’ aspiration. I gritted my teeth. Slight when you upend a bottle and send my child into a panic where he’s not breathing…yes, that doesn’t surprise me. My mom later compared it to my own fear of the water. I have never learned to swim and one mouthful of water leaves me in a panic to find air and a way out. Mack would go through this any time a bottle or breast was left to him without pacing.

After this traumatic study was done, the OT left her final report card stating she felt comfortable with me breastfeeding Mack when we left (carefully, pacing etc) but wrote in red bold letters “no bottles”. I spoke to a paediatrician after this who assured me that breastfeeding would not be recommended as my child would aspirate on the milk. I argued and eventually learned there was a large disagreement amongst professionals whether I was capable of keeping my child swallowing safely through breastfeeding…a real confidence builder as a new first time mom.

In the final week of our stay at the NICU, my hopes were broken. My husband was surprised by my usually sunny personality being replaced with pure pessimism. The glass was no longer half full. One paediatrician sat with me to explain why we couldn’t go home on the NG tube and that a full surgical G-tube would be Mack’s only option and that he might get off it but it’s also possible he may not be capable of eating ever. I nodded numbly and said okay. I watched Mack get wheeled off to get his tube put in. I cried over his perfect, smooth belly. I said goodbye to having a pure, untouched little human. He came back with a small piece of medical miracle inside his belly. Giving permission to have them do this to my baby felt like a personal failure, like giving permission for my baby to be injured.

My relationship with his belly tube has been tumultuous. I was explicitly told this would be our ticket to get us out of the NICU, the hardest month of my life. I sat through the lessons and took avid notes. My husband was eager to learn quicker than any other family so we could make our way home. We learned fast and were frustrated when anyone got in our way. Let us feed our child, we can do it. Leave us alone. We texted family “we can’t wait to get home” to rude responses like “oh you just wait, enjoy the sleep you have now” no one could relate to what we were dealing with and we felt achingly alone, unable to have anyone meet Mack or know him.

It was Mother’s Day when we finally left the NICU. It was fitting that each nurse and medical staff seemed to forget the occasion. The morning wait for a doctor to do Mack’s exit exam was agonizingly long. I’ve heard a lot of parents explain the feeling of leaving the hospital with a fragile baby; so new and scary. They talk about not being sure they can keep this baby safe, nervous when they were driving with them…it was not like this for us. We packed Mack up in his carseat, the one we stared at each day in the backseat waiting for our leave day, and I was acutely aware of how tiny and pale he was. Was this normal or did the NICU do this? We did not walk from the hospital, we ran. We craved a new beginning where Macklam could be a baby and not a patient. I missed my family, my things and wanted away from the masks and smell of hand sanitizer that was the hospital.

I had always considered the NICU to have somehow stolen the expected experiences of parenthood from me that first month but, as I ventured out into the sun and my husband carried the boxes of medical supplies, I realized the parenthood I expected will forever be shifted. Mack had already fallen asleep, his chin dimple to his chest, his tiny body surrounded by nurse receiving blankets for support, his newborn outfit oversized. His cupid mouth rested in a small pout and it melted me. Parenthood would be harder because I have a child that will forever test my strengths.

It had been 48 days since I arrived in Vancouver with my belly too big to see my toes, 25 days with Baby Mack outside my body and 25 days of enduring rounds, destats, machines and the experience of the NICU at BC Children’s Hospital. This would mark the first day as a family outside the care of medical professionals, taking on the upcoming challenges together as a little family.