Have you been gifted with loving a special needs or medically fragile child like I have? Are you trying to navigate the world of specialists, treatments, and medicine like me, feeling like you have been plopped down on some desert island by yourself, with no map, little preparation for the stormy weather, and no prior knowledge of the terrain? Do you stare at the closet of your heart often wondering, how do I even pack for this trip?
You are not alone.
If you can stay a few minutes, please kick off your hiking boots, set down your backpack, and take my hand while we sit and talk for a while. I’ll wait … because I have been there. I am still there. And I am here with you. If you are new to this trek, I hope I can help you with a walking stick notched with hope, strength and resilience before you head back on your way.
In June of 2010, in the hour after the birth of our 3rd child, Hoyte, my husband and I were shockingly told in delivery recovery, as we were blissfully talking about the beautiful new boy, that had just entered our world … that this beautiful boy actually had unseen birth defects necessitating further testing and immediate surgery. We instantly felt the bottom drop out of our once predictable world.
Doctors had not found any of Hoyte’s anomalies in utero and were unable to fully explain how or why this happened or what was ahead. We just knew that they needed to take him out of our arms and into an ambulance to the children’s hospital immediately. I felt as if I had landed on another planet … and I knew I could not go with my fragile new baby because I had just had surgery and needed to stay where I was. After picturing a scene of nursing my new baby boy in my room, recovering for 5 days in the hospital, reality totally shifted … there would be no nursing, no peace, no relaxing for quite a while. My baby was being taken in the “Angel Ambulance” to the other side of town … without ME.
To say we got emotional is more than an understatement.
After recovering from the initial blow, I was still up the entire first night, heart racing with anxiety and body recovering from a very difficult c-section. The days and months following his birth were filled with panicked attempts to understand what was happening as we tried to wrap our minds around our new reality. We faced years of situations that shocked our wobbly reality to its core inside an already crazy world that was occupied by precocious 2 year old twins and a weakening 15 year old Golden Retriever.
We thought that in August (still 7 weeks away), we would take a healthy, bouncing baby boy home to his new crib, cuddly lion, and hand-me-down clothes. Our experience having a 3rd child was supposed to be smooth, MUCH easier than having the twins, as he was supposed to be a single, perfect, chunky, normal weight, full-term baby. Easy breezy. I had done this in double-time before, and I was thrilled to face the easy world of bringing home only one baby, now that I knew how to swaddle, cure cradle cap and clip tiny nails. I had this thing. Well … that didn’t happen. Not at all.
Everything changed in an instant.
If you are still reading this, you may have had a similar situation that has changed your life too. I hope you can feel the hug that I am extending to you right now, as you are in a club with select special members. You likely understand and appreciate the tremble that often comes to my voice when I talk about my son and the obsession over finding out all we can about his illness with shaking fingers typing the diagnosis into the keyboard.
You understand it well, and you have been there too …
You have your own story that is unique to you and your family, and it will have great meaning as time continues to move forward and you are able to connect with others who share similar experiences. This is what I am doing here for a short time today, as I have to believe that there is someone out there who might need a hug of support. I want to take a few minutes to help you a bit if you are new to this journey, or just still trying to figure it out a day at a time (me too), and just want someone to give it to you straight.
First, I’ll give you a brief explanation of where we have been…
Our story, in a little boy nutshell:
Hoyte was born preemie at almost 33 weeks via emergency c-section after I was on hospital bedrest and suddenly suffered a placental abruption. An hour later, when the feeding tube curled up in his tiny throat, he was diagnosed with Esophageal Atresia with Tracheo-Esophageal Fistula (EA/TEF); (and yes, I still have to check the spelling on that each time I type it) and was immediately taken to the Children’s Hospital of Atlanta (CHOA) for testing and surgery.
Thankfully, Hoyte did not have most of the other anomalies that are associated with EA/TEF, but he was born with a hole in his heart, kidney issues & eventual macrocephaly, all which gratefully corrected themselves over time (thank God).
Hoyte had EA/TEF repair surgery at one day old (which I liken to operating on a piece of linguini), where the surgeons went in through a long slice in his back to detach his esophagus from his trachea and pull it down to the undeveloped stump atop his stomach. We held our breath that the surgery would take, hold strongly, heal without issue, and not perforate. We had our first miracle when tests continued to determine that we were the lucky ones: it took and was holding.
In the meantime, it was watch-n-wait, as we spent 5 weeks in the NICU waiting for his tiny body to respond to treatments and heal. It was the scariest, most exhaustingly helpless time of our lives … to that point. Dealing with tubes coming and going out of his body in so many fragile places, the initial days were the worst as we tried to find the strength to withstand the fear inside of us every time we looked into the sterile isolette at our baby wrapped up in wires. And then we tried to rearrange our thinking, as we realized that we would not be taking home a healthy baby any time soon, as the beeping monitors often delivered bad news as the hours ticked by.
If you are also a parent of a child in the NICU or ICU, you know all of the things that you are dealing with as you try to acclimate yourself to the overwhelming emotion of this new existence. You must adjust the way that you see the world and learn to live in the present, since tomorrow will have its own issues. Nurses become your best friends and doctors become hopeful heroes as they take your sleeping child into the operating room … time after time … You must come to peace with the reasons that you are not allowed to hold your child and comfort the pain that he is in … which would also comfort the pain that you are in.
You learn to STAND GUARD. You stay watch crib-side and laying a gentle hand on top of his head, you whisper lullabies over the ventilator’s airstream. You are feeling so weak but you want every sound he hears to be of strength.
You speak fervent prayers over the body of your tiny baby, infused with tubes, lying silently in an induced coma. You fight the urge to run away with him, crying inside silently every time you stand there, feeling so helpless, but you don’t want him to sense your crying on the outside. Not now.
You cannot imagine how he can bear the tube going into his chest, up in nose, into his throat, and through his arm, but you tell yourself over and over that he will not remember it … but knowing that you will. You watch every tiny grimace, eye movement or signs on his tiny face of pain, and you want to take that pain far away – inside your own body – and save him totally from all of it.
You keep adjusting the wires, tubes and tape, trying to figure out if they are hurting him, and you release your own needs for comfort, because they do not matter at all any more. You try to fall asleep leaning against the isolette, but it is impossible, and so you just stand guard, watching the green numbers as they change and call for the nurses when you get scared. Which is often.
You stay for as many days as your body will last, but you know you must rest, and you hate it. You fall asleep in a nerve-pinching position in the vinyl chair and only go home when you are reassured that he is stable and your spouse/mother/sibling will sit next to him and call you if anything changes. You give up worrying about the way you look or what birthdays/holidays/plans are passing, because your life is at a standstill and feels like it only exists inside the hospital doors.
Every parent is feeling the same fear as they move in and out of the NICU, bleary-eyed and cautious, knees dusty from prayers said in dark corners. But you want to bring nothing but joy and hope into your baby’s space. So you place your warm hands on him softly when allowed, and you put pictures and items from home around him, trying your best to create a space that feels somewhat normal, hopeful … and even disguised as ‘happy,’ while inside, you are nothing short of terrified, in emotional disarray and feeling totally helpless … and you are quickly losing memory of any ‘normal’ experiences outside of those hospital walls.
Hoyte would need a lot of special care during feedings and was quickly prone to choking, infection and critical incidents while in the NICU and after going home that first time. We learned that his surgery site could perforate at any time and that he also had Tracheomalacia and Laryngomalacia, which created a very noisy, weak upper digestive tract and airway. He would micro-aspirate regularly and gagged on his mucus persistently, especially while lying down to sleep.
The choking would become unbearable around 4am every morning, as bodily secretions started to be released during the system’s normal functioning. So I would be up with him, lying up him upright on me as I sat up against my headboard most of those nights, so that gravity would allow his saliva to go down his throat and not his airway. His swallow mechanism could not negotiate fluids like ours, and he fought choking most when lying down. It was a horribly exhausting experience for both of us through many season in the dark of the bedroom, all alone (my husband had to sleep down the hall with our 2 year old twins), and I was perpetually afraid that he would clog his airway and stop breathing any moment.
Hoyte would need ongoing monitoring during sleeping, as he had apnea, and would continue to have issues with saliva and fluids past his first year. Doctors eventually determined that he had no motility in his lower esophagus, which makes for a lifetime of eating issues and need for special diet. His severe Gastroesophageal Reflux (GER) was also causing crying and discomfort during and after every feeding, making for very long and difficult feeding sessions with his gulping, gasping, crying and choking (video of him feeding as a baby). Needless to say, one had to be trained to feed him, and I did not leave him alone. Ever.
So after coming home at 5 weeks from his first NICU stay, on monitors, special feedings, medications, and a gazillion follow-up appointments, Hoyte tragically came down with NecrotizingEnterocolitis (NEC), which is a critical infection of the colon, causing the intestinal lining to die very quickly, making it the leading cause of death in preemies (45% mortality rate). Thankfully, I trusted my gut and a nurse who told me over the phone not to ignore his symptoms (bloody diarrhea, fever, crying, bloating) for another day and rush to the ER. Thank God we did …
Parents, always, always, trust your gut. You KNOW when your baby’s body is doing something unusual or if he is acting markedly different. TRUST YOUR GUT… I did, and it saved his life.
We raced our screaming baby back to CHOA’s ER and was admitted immediately into the NICU with “late onset NEC” (which baffled doctors and we later learned was likely caused by his food thickener, Simply Thick). He was not allowed to eat for many days, and you can imagine how excruciatingly painful it was for me as his Mother not to allow my tiny 5 week old baby to nurse or have a bottle when he usually would feed every 2 hours.
Memories of that hospital stay still haunt me deeply … memories of his screaming and clawing at my shirt for hours on end, with my tears falling onto his little blue blanket, as I tried everything to comfort him in the spaces between the wires and tubes … until he would finally pass out from exhaustion, still whimpering, still begging to be fed in his sleep. I had to disallow him to eat so that his colon wasn’t stressed, and I can tell you that withholding food from a tiny, starving baby as my body continuously responded by producing milk was the most maternally painful experience of my life.
They had to x-ray his abdomen every couple of hours, around the clock and keep watch on the dying tissues. You can imagine the lack of sleep for all involved as we just watched and waited for something tragic to happen … or for the blessing of a healing to take place.
By nothing short of a miracle, Hoyte got his healing and survived NEC without surgery. He was one of the lucky few. I am still struggling with so many emotions about the hospital staff giving us Simply Thick, with it being recommended for his condition but never truly tested on preemies. So many babies died, and I am completely sure that we only survived because of my gut, my nagging fear, that nurse’s advice, and the quick diagnosis in the ER at CHOA. A few more hours could have meant his life. I will remain eternally grateful.
Hoyte eventually got his PIC line out, started feeding again, and slowly recovered from the trauma. Alas, his poor little colon did not heal very well, and he suffered a host of lower GI issues for over a year, keeping him in physical pain (and us in emotional pain) as doctors were unable to determine why he continued to have so many problems.
For that year, as we kept close watch on his GI tract and sought many medical opinions, I hardly had a conversation without discussing poop in some fashion. I can tell you I still speak “poop” fluently. It just overtook our life, especially after we learned that the food thickener he had been on was in fact, being named in a class action suit for causing NEC, and even death, in dozens of preemies. Something like that just overtakes your life. I’ll fast forward here to say, that our miracle came during his 2nd year when his colon seemed to function properly again. But that year was agony.
While lower GI was trying to heal … upper GI would continue to be a primary concern …
The scariest experience of my life happened when Hoyte was five months old. He had to have special feedings to keep him from aspirating or closing down his trachea from his severe reflux, and he often would have blue spells/Brady spells while eating (here’s a brief video of a short spell) where he would stop breathing. We had always been able to get him back to breathing quickly with methods like flipping him over and down, dislodging the mucus.
But one time it did not work during a middle of the night feeding, and he stopped breathing completely.
It was the most powerful experience of my life. It was the middle of the night and we were fast asleep with a night nanny downstairs to help with feedings at this point so I could catch up on sleep between pumping. Out of my deep sleep, I suddenly heard screaming from the bottom of the stairs – it was Ms. Carol, my night nurse – screaming in terror. My husband never heard her, but you know how Mom’s ears are … I always slept with both ears & one eye open. I glanced at the clock – 2 am, and I bounded out of bed and down the stairs in a matter of 3 steps, my heart beating out of my body, following the screams.
What I saw was Ms. Carol standing at the base of the stairwell, shaking, crying, and holding my lifeless baby in her caring arms, screaming, “He won’t breathe! He won’t breathe! Karin, I can’t get him to breathe! Help me!!!”
I wailed, “Oh my GOD!” and in one swoop grabbed tiny Hoyte swiftly, running back up the stairs with him in my arms, adrenaline pumping like I’d never felt in my life. Not my baby, God, not my baby!!! “No, Hoyte, No!!!” I got dizzy, images of losing him flooded my mind as his body lay limp in my arms. My mind spinning, I almost passed out, but I told myself to stay with him, and remember … do what you were trained to do!
I tried to remember all I had been taught in the NICU CPR class, and I felt time slipping away with every second. It is amazing what your mind does in quick, terror-filled moments when you feel life slipping away … I was frenetic, but these images started flashing in my panicking mind:
Visions of his funeral, his lifeless body here never warming up, letting him go, all of the crying, and the devastatingly long process of grief that I had seen others go through started flashing horror into my mind. I would be that Mom, the one who lost her baby … people would not know what to say to me and life would never be the same … I couldn’t let him go, no I couldn’t have my child die in my arms, I had to bring him back. Time was ticking, oh God, help me … “He stopped breathing!!!” I was screaming at my husband, who was trying to make sense of what he was seeing from the bed as he finally woke up from the dark. “He’s dying, he’s dying!!! Call 911!!! Find the phone!! Oh GOD!!”
So I started the breathing air into his mouth as I held him in my arms. I did not even think to put him on the bed because I did not want to waste one second or let go of my precious child. I was screaming, trembling, and crying … but desperately trying to blow life back into my baby in front of God, Ms. Carol standing in the door crying, and Joe searching in vain for a phone that could not be found …
I was pacing the floor trying to breathe that miracle of life back into his paling body, not knowing where to stand, how to set him down, or what to do. I was losing him … I was losing him … Crying, begging for help – it felt like time was flying by but also felt like forever. None of us felt like we could do anything, so I just tried … I just tried to do what I remembered. I could hardly remember – how many breaths? How many pumps? What were the numbers? Just breathe into him, Karin, you know something is trapped, just blow … is all I could think … just blow…
Ms. Carol stood in the bedroom doorway crying, praying, “Dear God, don’t take him! Oh noooo! Don’t take him, God!!” I couldn’t get him back, it felt like an hour had had gone by …
There was a lot of screaming between the three of us, with my blowing and pressing on his tiny chest. I frantically held onto his limp trunk and limbs, running around, blowing air into him, with him slipping further away and his once warm and rosy skin starting to cool and turn gray. He was cooling … oh dear God … he is gone … his skin turned cold … grayer … Oh God ….
But I kept blowing into his mouth, opening his little blue lips, blowing into his nose and mouth, trying to remember how to count, yelling at him … Screaming at his life to come back … I felt so inadequate, so small, so helpless …
“Breathe, Hoyte!! Breathe!!” *blow* *blow* Breathe!! Breathe, Hoyte, Breathe!! *blow* Oh my God!! Breathe!!”
To this day, reliving those moments drops me to my knees on the spot in my bedroom where I held my cold, gray child and thought it was over … I thought he had left for good … forever …
Then, I stopped still at the foot of my bed, as I saw a little movement – his tiny gray eyes opened slowly. I froze. I thought he had just died and opened his eyes in release … I thought ‘This is it … I’ve seen this in the movies when people open their eyes when they die’ Oh God … I waited, my heart dropped so deeply into my core, I thought I would never live life again … then a tiny, weak exhale escaped from his opened mouth …
But, I also knew that when people died they often let out a final exhale. Was he surrendering his life in my arms with his last little breath. Was he letting go?
Was he looking at me? Was he looking at God?
I stood motionless, and my own heart stopped …
And then he blinked. My boy blinked!
“Oh my God! Hoyte!! Hoyte!! Hoyte!! Breathe! He breathed!! He breathed! Breathe again, Hoyte, breathe!!” And he did. He breathed tiny, slow, wheezy, mouse-like breaths as his little baby eyes looked into mine … and got their life back. He looked at God for several minutes, but now he was looking at ME.
Within minutes, the precious color and warmth started to return to him slowly as tender, shallow breaths were made from his little weakened lips, giving oxygen back to his body and joy back to my world. His spirit was alive! That moment still flashes through my mind every single day, as I walk past that spot in the bedroom. At night if I walk him around in my arms before sleeping, I often stop on that place and sing “We Are Standing On Holy Ground …” to him. Tears always fall down my cheeks as I become overwhelmed with gratitude as the memories of the miracle of his life overcome my heart.
Hoyte 2 hours after CPR, giving me the Baby Power fist pump!
Thank God I had taken a CPR course (make sure you do this) before leaving the NICU, and thank God that Angels of Life were in multitude in my bedroom that night. I have no doubt that the divine Breath of Life was sent through my helpless mouth into his lungs, spreading open his trachea, dislodging the mucus, giving him back the life that he was meant to have.
It was not his time. He was ‘reborn,’ and it was the most profound, life-changing experience of my life.
The ambulance arrived soon after took him back to the ER at 3 am, with me following. My Mom (praying all the way) quickly joined me at CHOA as my husband, Joe had to stay behind with the twins (still sleeping), and we waited for our surgeon the next morning.
After testing and deliberating, doctors decided to do Nissen Fundoplication surgery on Hoyte to prevent him from threatening his life any more by refluxing, by trying to fix the absence of a so-called ‘valve’ at the top of his stomach. It was also decided that doctors would do Hoyte’s circumcision while he was under, since it was not done before because he was so small at birth, and we figured this was as good a time as any.
Joe and Grandparents joined us at the hospital again for the surgery the next day, and we waited again, praying on colorful couches in the cheerfully decorated waiting room as doctors cut and stitched the insides of our baby’s body. Of course, none of the families feel cheerful at all while they wait, but the staff does all they can to soften the intense fear echoing in the room.
Phone calls come in from nurses to let families know updates during surgery, and we all wait, trying our best to hold it together and not imagine what our child looks like as he is intubated, cut open and repaired. It’s just too much for everyone. So we hope and seek out methods of distraction while we wait in between prayers, texts and Facebook updates. Relief finally came again as the surgeon joined us hours later with a good report that the surgery went well. As all parents, we breathed another deep sigh of relief that this leg of the journey was over.
Surgery is always scary, no matter what.
But, there is always a caveat: with surgery comes the process of recovery and future risks, and for a baby that did not know how to talk yet, his condition would have to be translated by us and what we were seeing and hearing. We stood in the hallway with the surgeon, listening to the warning that the road up ahead would be challenging. Recovery from tummy surgery would mean eating issues for some time, and there there will always be a chance of ‘redo.’ Of course, the surgeon made the stitching as tight as he saw necessary, and we had to trust that it was enough to hold but not so much that food got stuck going down.
Off we went, hoping for the best and hoping for the best and praying to get home to our own beds soon. I told Joe to go on home as I stayed the night in his room, as things seemed okay for now. We figured he would sleep most of the night from the morphine, and I would get a few hours rest after not sleeping the night before. The worst was over … we thought.
But that night in the hospital was far from “the best.”
Coming down from the surgical meds and morphine, Hoyte did the unexpected: he went into traumatic respiratory distress from the morphine … but because of all of the drugs, it took a while before this was determined. His breathing and heartrate weakened to critical levels, and as the monitors’ alarms rang incessantly, he was uncontrollably shaking, visibly in quite a lot of pain.
I was so grateful my Mom was with me, even after I had insisted that she go home and leave me there alone to care for Hoyte, I would have been lost without her. I am sad to say that we did not have the best experience with the medical staff that night. We were being told that his reaction to morphine was normal for a child his age, and my gut told me that what I was seeing from my baby was far from normal. I got a big lesson in advocating for my child that night … We kept insisting that the doctor be called back to his room, which was quite difficult, as it was the middle of the night …
We had one nurse in particular that did not have a good handle on what was happening. There were many moments that Mom and I had to correct what she was doing, so every time she came in, we were very anxious. This particular time, Hoyte was still quivering and wincing, and she kept trying to shove a pacifier in his mouth, which he hated. I kept asking her to stop doing it, as he never liked it when he was well, and she ignored me. Such a difficult situation for an exhausted, yet intuitive Mom when this type of thing is happening.
Exasperated, after she tried to jam the pacifier into his shaking mouth for the 7th time, I finally grabbed the binky out of her surprised hand as Hoyte was crying loudly, yelling “Stop it! I told you, he doesn’t like binkies!” I turned to Mom with a I-have-about-had-it look when the nurse turned away from me, determined to finish her job, and I watched as she hastily squeezed Hoyte’s diaper to see if it was wet. “Stop it!!” I yelled, almost coming over the bed at all of her.
She had forgotten that he had just had a late stage circumcision, with raw skin and stitches, and she SQUEEZED his diaper – she squeezed his bleeding organ!
Hoyte screamed, I screamed, my Mom screamed, and our nurse just looked up puzzled as we were pushing her out of the way. I yelled, “He was just circumcised!!!! What are you doing?!?!” To which, she said, “Oh, I forgot!” His heart rate went crazy, and his breathing became severely compromised as his levels started to drop. He went into such severe shock that we could not calm him. We yelled at her to get the doctor and a different nurse, and as his alarms were raging, each staff member from the unit came quickly to the room to help. I was afraid, furious, and panicked, and frankly, I just wanted someone to listen to me and do something to help my baby.
They were listening now, as the monitors were wailing, and they could not get him to stabilize. Oh my God, I thought, Oh my God, not now … not again!
The emergency responders were called, and I will never forget the image of their shuffling us out of the room quickly, as the team came running down the hallway, jostling bags full of medicine and instruments to recover my boy. I trembled uncontrollably as my Mom and I started praying in small the coffee room across the hall, watching as they ‘bagged’ Hoyte continuously, buzzers screaming and lights flashing.
It is very difficult to hold one’s spirit strong when the medical team also has an intense look of worry and fear on their faces. It is impossible to calm one’s spirit when you feel the panic of a medical emergency screaming in the air, and that emergency is your son’s life.
My Mom, “Oma,” with Hoyte in the NICU
Feeling as scared as I had ever been in my life, I shook uncontrollably as I called my husband in the middle of the night, standing by the coffee makers & creamers in the family room – in total shock. Mom also tried calling someone for prayer, as we both frantically looked for someone, anyone, to answer their phone after midnight and PRAY. We needed PRAYER.
I stood there alone listening to the phone ring, staring at the coffee stirrers and powdered creamer scattered on the counter in the room across from my son’s life, feeling the counters spin, just trying to transport myself to another place for a moment as I stared at the formica countertops … which quickly blurred because of the tears filling my eyes. It was surreal. I wanted Joe there, even though he could do nothing. He had gone home with “Opa” to care for the twins after we thought Hoyte was going to be fine. There was no need for all of us to stay the night, and I wanted to be able to nurse him when he woke up. Boys need their Mommies when they are hurting … One of us needed to sleep. We had gotten used to the hospital overnight “tag team” cycle, and it was his turn to rest.
But it was after midnight, and I knew he’d be out cold from the long day, and so I called several times before finally waking him. “Thank God! Joe! Joe! Wake up!! Something is wrong! They emergency responders are here! Hoyte is having trouble breathing and his heartrate is all over the place! The nurse squeezed his diaper, and he is in so much pain! He can’t breathe! I don’t know what to do! Call your Mom! We need to pray, please, pray! I am so scared!! They are bagging him to help him breathe … we are outside the room letting them work on him. I am so scared, Joe!”
Poor Joe couldn’t hardly wrap his mind around all that I was saying, as we had not been through this before and it was so unexpected. He wanted to be there, but it was too late to call anyone, and he had to stay with the twins. I know he felt helpless and so far from the trauma. I called him every several minutes … which meant neither of us slept, of course … something we were also getting used to.
I remember feeling so alone there, even with Mom with me, as I just wanted someone else to talk to, to tell me it would be okay. Mom was busy in the hallway on her phone and praying. There was such a lonely feeling, as I couldn’t call my 2 best girlfriends because everyone was asleep. I just started sending texts between the doctors’ updates, praying someone would wake and see that I was in need of support – that my baby needed prayer. I remember going between pacing, texting, praying, and calling Joe, walking back and forth in the hallway outside of that TICU room, watching the worried faces of the nurses and the hurried ‘bagging’ of my baby.
That night was the worst, most critically intense night at the hospital so far as they continued to give him morphine to ‘calm’ him without realizing that he was (by my guess) having an allergic reaction to it. Hoyte kept dropping into the critical zone, and there were about 20 more episodes throughout the night to stabilize him. It was torture watching my baby boy in so much pain, trembling and struggling to breathe with nothing I could do but pray. So I did. Mom and I hailed in every angel of healing and peace from the Heavens that we could, and we claimed “Life” over him, in Jesus name. LIFE. I had never experienced anything so continuously and helplessly critical, as we just kept watch on the monitors by the minute, asking for another opinion. What they were doing was not working. We needed someone to listen to us.
After learning that the NICU was full, we demanded to be taken from the TICU to the PICU for more specialized care and a change of nurses – one of the few times that I have heard my mother, the pastor, demand in extremely stern language that something be done, and I was SO glad that she did. We were given a room, and minutes after being wheeled to a different unit, our prayers were answered. Our new, wonderful, nurse in the PICU immediately started asking me questions, puzzled by what had happened, determined to figure out why Hoyte could not stabilize. She turned to me after I insisted it was the morphine even though no one else agreed because he had tolerated it during his first surgery. She said,
“Hmmm … Oh … Wait a minute. Was he put into an induced coma after his first surgery when he had morpine?” I said, “Yes!” She said, “No one has mentioned that? Hold on, I’ll be right back!” “Thank you!” I cried. My Mother and I knew that we were finally being heard.
Within minutes, protocol changed. Yes, it was missed because he was given morphine in the NICU without a reaction, but because he was in an induced coma, his body’s anaphylactic reaction to the drug was likely stifled. But no one had thought of that … until our angel nurse was given to us on a new floor and in flew the wisdom that was needed … on angel’s wings. God WAS listening to our prayers, he just needed us to find our messenger.
Again … parents, ALWAYS TRUST YOUR GUT. Always PRAY, and always SPEAK UP if your gut tells you something is not right. The medical staff are amazing, trained, talented people, but things can be missed. YOU are your baby’s historian, advocate and night watchman. The treatment of your child is a collaborative effort with you as a team member, and your role is critical. Watch. Pray. Pay attention. Respect the staff. But if something is not right … Speak up.
I have heard story after story of other parents seeing signs of infections, seizures, and irregularities that the medical staff missed. They are tired with many patients, and you are in charge of making sure they are not missing anything with your child. SPEAK UP. Point things out. Ask for the doctor to be paged if you feel something is urgent.
It took another day to stabilize our precious baby, but he finally did. It was that PICU nurse saved his life. I was so incredibly grateful. After they switched meds (Dilaudid) and continued intense breathing treatments, Hoyte’s beautiful little body calmed and was finally able to recover from the trauma. Several days later, he recovered enough to go home, and again, he was knighted as “Super Hoyte,” bouncing back to the bubbly baby that he was quicker than expected. Thank God for that PICU team.
My proudest moment came on the 3rd day there when the doctors and residents were doing PICU rounds, entering our room, gathering around Hoyte’s crib for a discussion of his condition. The training doctor was looking for his history, and I stepped into the group, giving a very articulate oral summary of his journey, using all of the medical knowledge that I had gained in those 5 months. The doctor looked up, quizzically, saying, “Good! Hmm, I don’t remember you. How long have you been a resident here?” I smiled and said, “I’m not a resident … I’m a MOTHER!” He smiled, nodded, and said, “Oh, yes, you must be a NICU Mother.” “Yes, Doctor, yes I am.” If my glow was visible, you could have seen it from Tennessee. Proud, indeed.
If you are a mother of a medically fragile child, you have also become an expert. You have learned to speak the medical language related to your child’s condition, and you know every term, medicine, dosage, acronym, assessment and treatment like you’ve earned an honorary MD. Be proud of that knowledge, as you have insisted on learning all you can because of your love for your child and your determination to keep watch over all that is happening to him. You want to know. You need to know. And so you do. I call it “Standing Guard.” YOU are likely the strongest member of his treatment team, and you are his or her parent for a reason. Keep it up. Keep Standing Guard. That child picked you for a reason.
One wonderful memory of this event was that Hoyte got to come home on Thanksgiving Day after surgery. This will always bring this holiday a deep meaning in our home, as we celebrated our gratitude for his rebirth, his beating the odds, and his LIFE.
Here is is home on Thanksgiving Day, on monitors, but happily in the arms of Mommy, Daddy, and his twin siblings, who were still trying to figure out why all of the attention was going to this new baby!
Alas … recovery from surgery is always difficult, so we felt like we could never catch up on sanity, sleep or his development. It was more than unexpected and more than life-consuming. Things changed dramatically with this surgery, as we now had to care for him a little differently and feeding was a very timely, careful process as the system recovered. Because of the feeding tract being at risk, the throat and airway continue to be compromised in kids like him. Our lives were not our own for quite a long time. To this day, Hoyte’s bed is a pack-n-play next to mine so I can listen to his breathing, coughing and choking while he tries to sleep. “Tired” is just a parent’s normal, no matter how you slice it, but “exhausted” is the normal for Moms like us.
Also, with a Nissen surgery, the stomach is secured so tightly at the top, that the patient is unable to burp for a time (creating painful bloating and barring carbonated or spicy foods), and unable to vomit indefinitely. So we are not only frantically afraid of his exposure to airway viruses, but we are equally fearful of the tummy bugs. Hoyte cannot throw food up, so his experience is rough, as the infection causes him to retch painfully, without relief, until the infection works its way through his tract and find its way out with a vengeance. More poop talk, and no fun at all. So as you can imagine, we are hand sanitizer insane and hand washing crazy. And if you have a sniffle, cough or hint of nausea, sorry, you can’t come in. Period.
The other consideration for Hoyte’s esophageal and stomach issues is his need to have food that can slide down easily and not risk the chance of getting stuck at the surgery site or lower tract if it is not chewed properly. At 2 ½, little man Hoyte still eats mostly mushy, or dissolvable foods, which will need to be the bulk of his diet long-term, to be safe. Little boys are famous for not chewing their food anyway, right? And as you know, scar tissue constricts, and since he has a scar tissue in his ‘swallow tube,’ the site of the surgery ends up being smaller than the rest of the tube, especially as the body grows, and chunky or solid food can easily get trapped. Future esophageal dilations and procedures removing stuck food are expected throughout life. I can promise you that the most said words in our house are, “Hoyte, chew-chew. Chew-chew.”
It’s been a long road with a host of hospital visits and infections. Little lambs like Hoyte have asthma and are very prone to lung infections, so he has had his share of pneumonia, bronchiolitis and RSV. I call us “frequent fliers” each time I walk into the ER, cradling our sick and hacking little man as we wait to be called back. I know the drill by heart. Hoyte’s tracheomalacia makes him sound like he has croup at baseline, so when he is sick, we can clear a room in one barking cough, sounding like some mucus-lined hyena, as mothers yank up their kids and run away from the child who truly sounds like he has some Amazon-born lung infection. The only plus is that his cough always gets us to the front of the line as the nurses usher us back with an “Oh my! He sounds horrible!” covering their own mouths. Yep, he does.
One of many ER visits over the years.
Well, about 6 months after his Nissen, Hoyte had a rough round of pneumonia and retched so severely that he blew out his surgery site and herniated his tummy at about 8 months old. I knew it because he started vomiting again and refluxing constantly. We were totally heartbroken. All of that recovery, and we were back where we started, and he was really hurting. After testing him, running procedures and swallow studies, our whole team wrestled with whether or not to ‘redo’ the surgery. It was very difficult, as they left the decision up to us. Through prayer and research, we decided to do it again before the next viral season started, so at 14 months old, he had a hernia repair surgery and another Nissen.
Bringing your innocent, unknowing tiny child to the O.R. of the children’s hospital is always heart-wrenching. There is a flood of emotions coursing through your veins, with doubt, fear and dread swirling inside of every parent’s body. It’s a blender of emotions as you wait for the surgeon to re-emerge, sitting with all of the other parents and grandparents with their overnight bags and smart phones, updating loved ones while in the waiting room, praying the news is positive, your child stays strong, and the medical problem gets fixed for good.
You just pray to God that you have made the right choice, that the doctor’s hands are steady and perfect, and that no infection sets in or new challenge arises from what they are doing inside your child’s body. Because, as our surgeon put it to me, “Mrs. Smithson, once you start moving around organs and building up scar tissue, you’ve just got an entirely new situation in there.”
I never knew faith until all I could hold onto were the reassurances of the nurse who took him away in her arms, the spoken confidence of the surgeon who promised he knew what he was doing, the words in the Bible that I had memorized in my youth … and the prayers of so many people, some family, some I did not even know, who loved my baby boy and wanted him healed.
I never knew the love of God until I realized that He was okay with the fact that I was angry, exhausted, confused, and petrified and unable to pray for a time when my newborn was first taken from me, but He waited right there by Hoyte’s bedside with me anyway, loving me all the way and waiting for me to come back.
I never knew gratitude until I saw the surgeon walk through the swinging door of the hospital waiting room, removing his mask to reveal a reassuring smile.
I never knew joy until I watched my child recover body and soul from infections, procedures and surgeries and then one day finally saw his smile again … even brighter than before.
I never knew closeness until I realized that God indeed had been tucked up beside each of us every single hour. And when I regained my strength and was able to reach back up to Him with a renewed spirit, His voice sounded closer than before, and the warmth of his compassion flooded my heart with indescribable blessing.
I never knew anything more certain than what I know today for sure: Our little Hoyte is a miracle, and he is HERE FOR A REASON.
And so is your child.
Just like yours, our road has wound around and around, with more bumps and surprises as Hoyte often battles infections, faces procedures, and endures treatments, but with every week that passes, I am confident that his strength and ‘fight’ will build developmentally. I believe that because of prayer and medicine, his body has found windows of health to thrive and strengthen, and it has done so in miraculous ways. We have left the NICU, TICU and PICU many times with doctors wanting to put a cape on Hoyte’s scarred but resilient back, and call him “Super Hoyte.”
He is a colorful, laughing, joyful child, and what a miracle that is to witness.
TODAY … He will be 3 in June, and although he has regressed many times with illnesses, he seems to be developmentally caught up, and appears as normal as any little guy pattering down the hallway singing Disney songs. He loves to play with his brother and sister, especially now that he can actually run. Although his chest is somewhat narrowed and shortened because of his anomalies, you likely would not notice, and we are not seeing any evidence of brain damage from his not receiving oxygen when he suffered his ‘blue death.’
His cheeks are rosy pink, his eyes a soulful brown, and his spirit a rainbow of happiness that displays nothing more than LIFE, joy and purpose.
So, between illnesses, I get some stretches when I start to see the light and life feels a bit normal. Those days of healthy light are A GIFT after years of sickness being our ‘normal.’ And let’s not even get into the extra carnival ride that occurs when you throw in a set of twins … and LIFE in general!
It’s been more than a roller coaster ride, and boy, oh boy, has it been more than I ever … ever … EVER thought I’d experience when I chose motherhood. The blessing is that I undoubtably know that I made the right choice, because …
I DO believe that Hoyte chose me … and his Daddy, and his precious brother and sissy. As his Mother, I would do it all over again for the rest of my life because I am rewarded with the biggest blessing of his survival: I get to hear my hero call ME “Mommy” from within a well of love, laughter and life. Yep, we all chose each other.
And I believe that your son or daughter also chose YOU. No doubt in my mind that these little spirits search the world for the perfect Mommy and Daddy to care for their needs. During that little soul’s search for his/her parents, your spirits shined brightly, showing the strength, resilience and love that that little body needed to have when it entered the world. Indeed. You were chosen.
You didn’t know it at the time, nor would you have ever expected it to happen to you, but now that you are your child’s advocate, caretaker, medical organizer, feeder, treatment administrator, home nurse, medical transporter, giggle maker, faith bringer, boo-boo repairer, tickle monster, and life giver … you can be assured, you were chosen for this role before you knew you were up for it. You have what it takes. I promise.
You just did not know it yet.
For TIPS on GETTING THROUGH the NICU/ICU with your child, please read “Words of Wisdom.” From my heart. We are in this together.