He’s inquisitive, into everything, outgoing, determined, endearing and finally learning some words.
The best part? He’s healthy.
I haven’t posted about Hirschsprungs in a long time, largely because he began to thrive and we were mercifully able to allow it to sink into the background of living.
We have experienced another bout with enterocolitis in December 2015 (when he was 13 months old) and this time we ended up admitted to Penn State Hershey Children’s Hospital. We were there 3 days, total. We get incredible treatment there and he overcame the infection after some consistent IV antibiotics and routine irrigations.
We were informed that the likelihood of infection decreases measurably after age 2, and though we keep a faithful eye, we have found that he does indeed seem to be less susceptible. Before age 2, with any fever or sickness, we found he seemed to tend toward a slower colon. The hospital gave us a standing prescription for Flagyl (because we live at a distance), which we only used once. On that occasion, we saw warning signs that another infection was developing (the odor of his stool triggered a sensory warning in my instincts, he was lethargic, less appetite). On their own these symptoms can be circumstantial, but together and in a Hirschsprungs baby, they are cause for alertness. After a day or two of oral antibiotics, we found those signals to have subsided (though we completed the prescribed course). But this winter, he seems to be stronger, in general.
Really, Hirschsprungs is sort of old news for our family, but that might be beautifully therapeutic to hear if you’re just beginning on journey of your diagnosis and treatment. And while every story and case is different, let me offer this: allow yourself to stay at peace. Allow yourself hope and vision that extends beyond the sick baby. Keep everything in proportion and carry it gently, with calm. Teach your soul to be still.
Here is a hand to hold from across the valley you have to walk through: there is healing. It is abundant and thorough for your child, and for your heart as you carry your child and family. It’s in you, and you can do this well. Just one day–one hour–one moment–at a time. Worry will lend you nothing but emptiness.
Tyce will potty train soon. He’s slowly starting to signal interest. On that day, I will be taking a me-day. I will take myself to lunch, get a manicure, take a nap and do a selfie-dance through the diaper aisle. It will be a day worth celebrating, and I promise to come back and post again, as another beacon in the night that your Hirschsprungs baby can too.
As I was organizing my Hirschsprungs entries recently, I realized that my posts about Tyce’s Hirschsprungs journey continually receive visitors. My heart goes out to those of you who find these entries as the result of a Google search, working to educate yourself about Hirschsprungs, maybe for your child? Recently I re-googled the disease, aware of how difficult some of your journeys are. I put myself in the position of a weary mommy, worried about her child, and I so wished I could remove some of the scarier, more worry-some entries from your access.
Not because you can’t handle them, and certainly not because those with a more difficult path through Hirschsprungs are not worthy of a voice. No, most certainly, their experiences educate us all. We go with them as they endure.
But when a mommy is tired, both mentally and physically, and an internet result presents us with unfiltered negative possibilities, before the facts of our own personal case are in, it’s just almost too much to bear. You look at your child with that stream of agony rolling through your mind and heaven help you if you don’t just want to get in the shower and cry.
So I am aching that you see this one too. Jesus, please bring them to me too. That you see the depth of the Father’s love and grace and courage over your life, and that you be endowed with a fresh jolt of endurance and hope. That you see His fingerprints of healing in Tyce’s journey–not just because his procedures were successful the first time, and not because I’m a believer so God is naturally more inclined to my good. I so wish you could come here to me. That you could sit with me and let rest seep into your heart and mind. That you would get a good night’s sleep in the confidence of His never-ending presence with you. That you would feel empowered to trust your instincts, make decisions, direct your thoughts, and feel hope. Jesus, send the hurting mamas to me too.
I wanted to also post about our encounter with enterocolitis. If you’ve encountered Hirschsprungs, enterocolitis (infection in the colon) is a very real possibility, both pre and post-operatively. This is why Tyce was on pre-emptive antibiotics after his surgery. As stool encounters the suture area, it easily stimulates infection because it is not sterile.
To be honest, when they warned us about enterocolitis, I filtered it. I was just so relieved to go home, and needing to shove new worries into a new day, that I paid very little attention.
And we did have nearly three seamless months, or so I thought.
But at some point, that little worm of an awareness squeaked through into my mind. Tyce was lethargic. His stool and even gas were very foul, such that if he even farted around people it was potent enough to turn heads. His belly seemed to spasm sometimes, such that I could see the outline of his bowel as he digested his formula. He was still making plenty of dirty diapers, so his appetite was fine.
But he just didn’t seem to be thriving. And one morning, I looked at him, laying listlessly near my keyboard, and I just knew. Something wasn’t right.
I scheduled with Hershey and Mom came with me. Somehow Mom always knows when to get in the car. When I presented my concerns, they diagnosed enterocolitis on the spot. I suddenly realized this was very possibly a admit-able condition, as some cases of enterocolitis are volatile and quickly life-threatening. This was not our case. After some discussions, and since he wasn’t running a fever, we decided to treat his infection at home.
They prescribed Flagyl, a compounded antibiotic that needed to be administered three times each day. The irrigation of his bowel resumed, also three times daily. I remember how exhausted I felt all over again, just this constant pressure to be home at all the times when his little body required treatment.
So it was another process. For me it was lonely (I’ll admit it). Nick wasn’t home (due to his 2nd-shift employment) during any of the times that Tyce needed irrigated, so Aly (our 5-year old daughter and eager helper) and I resumed the job. I didn’t know how to communicate to people that I needed praised for my invisible nursing, and for becoming such an expert. But I just set my mind on doing what needed done, choosing to focus on my relief that his case was not more severe.
After we began treatment, Tyce immediately seemed to perk up. I took him back for a followup a week later, and everyone was happy with his progress. We began to taper off the irrigations, transitioning to twice daily for a week, and then once daily for a week, and then ceasing all together.
I did order and begin to consistently use an infant probiotic. I had stopped being able to breast-feed, so I mixed it into his formula (I used a gentle formula) daily. He seemed to bounce back quickly and though I kept a much more educated and watchful eye on him, we haven’t encountered any further infections.
It has been two weeks, to the day, since Tyce’s surgery. Many times each day, someone asks me how he’s doing. I have been so overwhelmed by how loved we are, how intentionally people were caring for and about our family. And I’ve answered you all the same: I think he’s doing good! I really tried to give an honest answer without inviting conversations about the details, as I was spending large amounts of each day actively controlling my thoughts.
Internally, I was on full alert for every possible complication, determined to detect any possible early symptom. I examined his belly–was it hard? No, I think it’s soft… I carefully changed diapers frequently and even tried to reason as to was this stool the right color? Is that texture a little abnormal? Sometimes his belly looked a little funny to me; other times it was pristine.
Several times each day, at the very hint of a worry bunny trail, the detour that I knew would lead me away from the rest of the Lord, I chose the way of a child and walked intentionally away from the encroaching emotions of fear or worry. In those moments, over and over again, I faithfully gave myself over fully to the engulfing power of the love I have for my son, as a mother’s love so deeply mirrors Jesus. I have learned such rested power in that place.
On Tuesday, while in the office, I sat for several moments on the rug. Tyce sat before me in the bouncer seat, and as I looked at him, I felt the Lord swell within me. I know that moment was significant, as I laid my hands on him. I trembled under the weight of that time, as I laid his identity and health out in honor of the Lord. As I felt words rise in my heart, I released them. Tyce’s face cracked open in a huge smile that lasted the whole time I spoke and I laughed and cried simultaneously as the words of Jesus spilled out into the earth.
This is the first time since this whole thing began that I have been able to utter a single word aloud in prayer concerning my son. The whole time, I have carried him so deeply that every time I tried to pray, I choked in the translation. There was simply no way to bring the aching, gutteral intercession of him into my mouth. They simply sat in my belly, burning. I know the Lord heard every word my spirit cried, but as those words came into life, out into the air, I felt the weight of all I had carried spring to life, as though all my silent intercession had been seeds, and I was watching them sprout open. That’s the best I can do to describe it; I will remember that moment forever.
Today was Tyce’s follow-up. When we checked in, they let us know they were running behind about a hour. This didn’t bother us; we sat in the waiting room and I fed Tyce. We chatted with him and pulled every trick we know that makes him smile at us. I didn’t really want to rush into the appointment; I had enough questions that I knew his appointment could go either way, so this calm time together was completely a gift.
First they weighed him, which was 10lbs 8oz. For a mother who was hoping for, I don’t know what I expected, maybe 20 pounds? Haha, nah, maybe not…I just knew the number one thing I wanted to see was evidence that he was growing. So this was initially a disappointment, though we immediately began reasoning it away. He had two full days with no nutrients in the hospital? I wonder what he would have weighed at discharge? They emptied his colon almost entirely…
I asked the doctor my other questions, and immediately I began to realize this appointment was going well. She examined his bottom and exclaimed my favorite word: that looks perfect! She put my mind at ease concerning my other concerns and even ran some numbers on his weight, telling us he is now growing at the normal pace of a healthy infant. Nick said my body language entirely changed in that moment.
When the surgeon came in, he too examined the bottom and was stunned. I’m not exaggerating. They anticipate that these babies will have terrible diaper rashes post-op because of the antibiotics, frequent pooping, etc. Tyce’s skin was healthy and pink, with not a single sore spot. The surgeon actually asked me what I’ve been doing.
Then came the training on dilation. The sutures inside Tyce, around the tube very close to his sphincter, could shrink as they heal, creating a stricture which could limit him from thoroughly evacuating his bowels. (Can you tell I’ve been paying very close attention?!-Haha!) So while that area makes the transition from scar tissue to healthy bowel, they need us to keep that skin soft and pliable by keeping it stretched.
The dilators look like this:
I know, right?
So the doctor laid Tyce out and began to demonstrate, teaching us how to do this (a procedure which is really quite simple). He was also using this opportunity to determine which size that we would need to start with. He started with 7, the smallest. It went in easily. So he selected the 8. Again, no problem.
9, 10, 11, 12… (At this point, the surgeon was exclaiming his surprise, very impressed how well he’s healing.)
13. Ahh, bingo. We brought the 12 and 13 home. We’ll be doing that once per day for at least the next four weeks, as a precaution.
So Tyce is healing, and healing well. The surgeon today reiterated the great job Dr. Engbrecht did, and I remembered knowing the Lord gave us that surgeon intentionally. I am sure all of the surgeons are wonderful; we have loved everyone we met. But I knew Dr. Engbrecht was for Tyce. How beautiful to see the skills the Lord gives these incredible men and women.
So far, there is no sign of infection whatsoever. He is eating well, and has finally begun to allow me to teach him longer night-time sleeping habits. It was important not to rush that, so that he would first begin to grow. Now, at some times during the night, he has begun to stretch to 5 hours. Hallelujah!
The doctor gave us some insight on what the future could look like for Tyce. Of course, every effort has been made to ensure that he will be continent and able to live normally. There are some possibilities of different challenges we may face, including something as simple as being slower to potty-train. But Dax already made sure I’m very very patient in that area.
As we left the office, and I was breathing good deep breaths, I started lifting my heart to the Lord. He told me something I have to tell you. He said: All of them. Every time they prayed. Every time they loved. I was there. I am here. Oh, beloved, we did this together. I love you.
So, can I just get on my knees before you, here digitally on your screen, and look into your eyes, all you loving, crazy praying people, and thank you for being in Jesus with Nick and me and our family? I love what He said: We did this together.
I love you all. Father, from the tip of my toes…
So, I’m going to bed now. I feel like I’m going to sleep really really well…
We got home Saturday around 6:30pm, feeling very reminiscent of the first day we brought Tyce home. After all the heightened attention to him, to lay him comfortably in his rocker and work on menial tasks like unpacking is oddly difficult. Part of the way home, I felt dangerously close to a panic attack–a sensation I’ve never encountered before and honestly, thought I never would. Looking back, I was just very tired. I worried aloud that Tyce would always require high-maintenance care, a big departure from my other two robust kiddos. I resented the idea that this pressure point would exist in my life on a daily basis, demanding a level of doting attention that I don’t typically parent in. Was Tyce a ticking time bomb? Was his beautiful, quick recovery merely a bait-and-switch, to dissolve some random day in a random, high-drama moment? Everyone wanted to act like Tyce’s saga had ended; am I the only one who knows it isn’t?
Frankly, I lost total control of my thoughts for a mere minute or so, and the sense of panic resulted. Slowly, it dissipated, but when we were finally in our front door, all I wanted to do was sit. Nick turned the thermostat back up to “occupied” levels but it took a while for the furnace to catch up, since it was so cold outside.
Mom brought the kids home later and normal started to ooze back into the room; their childish chatter released light. Some of my exhaustion and pressure dissolved. That night was a good night, Tyce sleeping very well (only waking at 2am and 7am to nurse), which allowed me the long phases of sleep I sorely needed.
I had been on the worship schedule for this Sunday, my first return back since Tyce’s birth. I knew all week that I needed to be there, even after Tyce’s surgery was scheduled. And again, when it sounded like we might not be released until Sunday or Monday, the loss of that morning was the first thought in my mind. So when we were home, and Nick was totally releasing in the idea that I go, I fed Tyce as late as I could (hopefully, I’d get home in time to avoid a bottle to his day) and followed my heart to WHO, to my people.
I knew there was something in me for that morning, for those people, something of the Lord that was needed. I can say that openly because I think that we, as we mature into our Father, will all begin to embrace the truth and conviction that we each carry something unique to us and important, something that we feel compelled to provide and release. HE is the birth place of real self-image. You see His vision of you and it brings you into movement. I needed to be there, and I was needed there. I felt the swelling heartbeat urgency of the Lord over that moment on Sunday–so many of us did, even during practice. The first thing Denver said when I got there was there’s something about this morning.
And there was. Jesus walked into that room in each of His own, swelled up in fire and cloud and gentleness as we laid our full awarenesses on Him, the center of our full attention. He is always our reward and that was beautiful.
Jesus, deeper we come.
And then, people reached out to us again. Chris and Amanda brought lunch from Fudds, and can I recommend their chicken taco salad? With guacamole, and a mix of their spicy and regular ranch dressings, k? Oh my. Fred and Lynnette (dear former employers at L.A. Cameras, but really, huge shapers of my life) brought brisket and smoked gouda mac-n-cheese, fruit and chocolate. Dad and Mom Helman came to eat with us, snuggle, and are always good company. Matt and Courtney brought chicken and rice soup for my refrigerator–the perfect thing for today’s Monday.
It’s a bumpy one, folks. My children need weaned from a voracious TV appetite–they’ve forgotten how to play without a show on in the background. Turning off the TV for today (and, I imagine, the next few days until we get the ship balanced) means they’re constantly whining and tormenting each other. They’ll improve, but it’s day one and they’ll ask for TV another hundred times today. Sigh.
Tyce is used to being the center of attention and hasn’t truly shared his parents for a while–and at the hospital, was perpetually held and comforted. But I have 3 children and he needs to learn to share (plus, frankly, I have other things to do as well). Currently he is crying and will continue to until I pick him up (which works, until I put him down again and the cycle merely resumes), or he goes to sleep. It makes for a stressful soundtrack, but otherwise he is doing quite well. Dax is potty-training (and doing quite well), but add that to the pile.
And the ice/salt scum is back on my foyer floor. I don’t know why that matters right now, but it does.
When someone asks me how I’m doing today, here’s the truth. This makes me laugh.
The trick is to ride above it all, and not become too invested in any one of these minor skirmishes. Yes, my children need a break from TV and will be annoying while they adjust. Yes, Aly is singing Let It Go at the top of her lungs every fifteen minutes–which is almost enough to make me turn on the TV just to change her channel. Hang in there, Joan.
Yes, Tyce is a little demanding and will have a rough few days until he acquires a better sense of our family culture. Yes, it is likely Dax will poop in his naptime diaper before I remember to put him on the potty. Yes, my floor will probably carry some level of snow scum all winter long. Yes, I’m still tired and a little afraid. Even a little resentful, honestly.
But He Still Is, and in the 30,000 Foot Perspective, this too is for me and will achieve its work, if I do not resist. So instead of giving up, becoming overwhelmed, or sinking beneath it all–even here, I say His Name.
Hope That Never Fails. Peace That Surpasses All Understanding. Father. Strong Tower.
The One Who Transforms Surrender Into Power.
My Entire Source, My Whole Foundation.
All of Him is Mine.
Right now, I have one very simple prayer. Jesus, please–just help me make it until naptime.
Today we do not despise the small beginnings. I do not feel sympathy for myself here—well OK, a little, but whatevs–but mostly, I feel anticipation. The fire has always been an ally to the faithful, a springboard into the higher, deeper places. Many times in my life, I hear the words of Giles Corey echo in my heart to my Father: More Weight!
I am pressed, but not crushed. Oh, that the richest wines pour from me right into His heart.
I suppose this is quite understandable, but at some point since this whole thing began, I have become exhausted. I didn’t really notice it until this moment (of course, I’m writing this much later), but Tyce started crying to eat and I couldn’t even fathom the idea of getting up. I said Nick’s name a few times, but he didn’t hear me–so I threw a pillow at him. Not really my style, but it worked–and he changed Tyce, brought him to me to eat, burped him and returned him to bed. I was awake for maybe ten minutes of that whole process. I was so completely exhausted that as soon as I handed the little guy back to his daddy, I rolled over, curled up and was completely asleep again almost immediately.
Tyce ate again at 6:00am (also when they brought around his next dose of antibiotics, to prevent infection at the suture site since stool encounters that spot regularly). And I remember that a surgical doctor came to check in on us around that time too–but I remember very, very little of it. I do remember the surgeon commenting that we would probably go home Sunday or Monday–and me mentioning to Nick that I would have to find a way to do laundry.
A child has crying hysterically for some time, finally waking me up. As I came to, I remembered hearing it for a while in my sleep. Poor kid–being on a pediatric floor is sort of magical though. You hear childish chatter and sometimes little games between the nurses and their patients. All of the nurses ooh and ahh over our cute little man, which of course we agree and pretend that he’s the cutest they’ve ever seen. I packed Tyce’s Penn State sleeper and had it on him before I remembered the happy irony that he was admitted to Penn State Hershey Children’s Hospital–so the nurses quite enjoy his solidarity and squeal over the Nittany Lion on his bum.
Tyce has breast-fed successfully since permission was given yesterday evening. They removed his saline IV, and now only use that port for antibiotics. A member of the surgical staff came in to examine him and his progress. She gave some instructions concerning his care, warned us that he would encounter diaper rash, and then off-handedly mentioned that he would have his final dose of antibiotics at 2pm and then, maybe later, head home.
Of course we were surprised–and not all together pleasantly. Of course we want to go home. Of course we ache for our children and our bed. Of course we want to yank the IV splint from Tyce’s arm, take him home, snuggle him close and pretend none of this ever happened.
But that’s not true. Somewhere in his body is a ring of stitches (they say it looks like a lion’s mane–isn’t that awesome?!) that connects healthy intestine to his sphincter. Every diaper carries a green tinge and the unmistakable smell of antibiotics. I can’t help but think if he stays here, if we just set up camp here forever, nothing can ever go wrong. The things they say could happen–infections, etc–would be immediately caught and treated, without fear that Tyce’s preoccupied mother could overlook them until he’s in danger.
Suddenly I understand why the mothers of one-time sick children hover sometimes, why they seem to never quite “get over” a sense of protective guardianship over the details of their child. Suddenly I am face to face with a fear I never thought I’d be susceptible to, the mother who once boldly announced that children should be permitted to encounter danger and face down their own challenges. And now, my words are laying here around the fringes of the newest battle of this journey: fear that I am no longer qualified to care for, or to absolutely protect, my son.
Of course, when I take a step back, and stop engaging this monster in my own sort of bravado, when I fall back and lock spirit with my Father and all of you, of course strength and courage are quick to return. I am renewed in the overwhelming reminder that Tyce has never been only mine, and he was meant for this moment. If this was meant for him, then to it was meant for me.
So, as I have said over and over since this started: one day at a time. So if we carry our son from this place today, I will do so with a gentle, calm spirit, with a real smile. Grateful that this leg of the journey has ended, and confident that He still finishes what He begins.
Tyce is getting his last dose of antibiotics now
We are cleared to go home.
Tyce had some visitors: 3 storm troopers and a member of the Imperial Guard. I turned into melty mommy in that moment, of course. How fun. The wife of one of the storm troopers (haha!) makes these little crocheted stormtrooper dolls and gave one to Tyce. This is the coolest thing that has happened today, so far.
After Tyce spending maybe 6-8 hours in his hospital bed, sleeping (sometimes peacefully, sometimes fretfully), Nick and I were able to grab a few hours, though we are certainly far from rested. We have not yet been able to get a hospital room upstairs, so we are sleeping on these blue pleather recliners that require constant muscle attention to stay reclined. If you curl up on your side, it’s a little better, but Nick has struggled to get comfortable. Tyce just settled from a good “I’m over this” cry, so in calming him, we were lifted from that weird sleep…zone?…fog?… Nick is holding Tyce and his breathing just changed, so he’s probably sleeping again, which I am relieved.
The photo above is the view out our window right now. Sometimes I see medical people, clutching their coffees and bent against the brutally cold wind, coming and going. Gosh I love these people–what extraordinary, important work they do.
He has been hooked to wires since surgery now and I hate them. I wonder about parents who spend much longer amounts of time gingerly positioning each encounter. Careful, is it tugging on his IV? Did the pulse/ox come off his foot again? They have his little arm in a sort of split to keep everything in place–which he hates. I fight this odd reflex to rip all this paraphernalia from him so we can have a proper cuddle. And then you catch this sneaky little thought creeping into your mind, that these wires are what sustains his life and comfort. You let them gain mastery over you, even fearing that one kink might set off an emergency situation.
I rebelled properly against that mindset a few minutes ago. And while I have no intention on removing these beautiful aids from Tyce until he and the doctors feel comfortable, I again turned my heart aright to its True Source. Our loving Healer–Tyce’s Perfect Designer–and quite simply–Daddy–IS WHO HE HAS ALWAYS BEEN. Nick just snored–PTL. Erin Brookens reminded me that He’s not only the maker of Tyce, but also the maker of the doctors, the source of their skill.
So the wires. I feel like I’m not being very coherent this morning–sorry about that. I hate them, I temporarily accept them, and I put them in their proper place–aids used of the skilled providers who were sent by the Lord to care for this boy.
In other news, they have these ginormous cookies in the Rotunda that set my heart a-flutter. You know, small victories…
A few photos I didn’t get a chance to post yesterday:
Steph came to see us this morning. That was nice, as she is very comfortable in medical environments and doesn’t feel the awkward need to fill the empty quiet. She handled Tyce very confidently amidst his wires and snuggled him happily for some time. She was a bright spot in our morning.
Just a few moments ago, and in maybe the best development so far, we finally were moved out of the surgical recovery area to a room in Pediatric Acute Care on the 3rd floor. We have so much more room to move around, our own bathroom and are finally able to shower. They needed to find us a room by the end of the day because the surgical floor closes on the weekends; we are sitting here feeling like we moved into the medical Marriott. Thank you, Father. We don’t know how long we’ll still be here, and this room makes the prospect much easier to embrace.
And if you’re counting dirty diapers (I am), we have reached 5.
Y’all, I’m feeding my son.
Hallelujah–we thought we might have to wait til tomorrow and I’ve been dreading that for Tyce’s sake.
Now is the real test: is his body ready?
We believe it is.
On this picture you can see the splint-type brace they have under his arm to stabilize his IV. We’re so ready to have that removed. The doctor said after 3 successful feedings, his IV can be removed.