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…)