Biopsy

First, about fifteen minutes into our drive to Hershey, this voicemail popped up on Nick’s phone (somehow we missed the call):

The message is broken up, but it confirms that Tyce will have access to our insurance policy for his care.

You guys, if I haven’t said it already a thousand times, let me said it again: Thank you. We know you’re praying. We can tell.

Nick took my hand as we went down the road to the appointment and we both gulped huge lungfuls of air in relief.

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By the time we made it to Tyce’s appointment today, it had been three days since his last bowel movement. If you’ve been reading these updates, you know I’ve been wishing, and hoping, and praying for his little body to make room for his stomach. I was sad when I saw his weight is still 9 pounds 5 ounces, as it has been for two weeks. But our prayers were answered differently.

You see, when we walked in the door of Suite 400, we were met by a gatekeeper of sorts.  Evidently, small town hospitals are sometimes premature in their sighting of Hirschsprungs, because they don’t see children as often and are more easily disoriented by the results they see on the Xray.  They suggested this to us gently before his exam, even insinuating that perhaps we were just there for a consult. I felt my heart sink.

Then they examined him, and his expanded little belly grabbed their attention more seriously.  Suddenly I was thankful for the last three days, thankful that he hadn’t emptied his bowels before that appointment, where his stomach might have deflated to a less impressive girth. Each examiner says the same thing: that’s quite a belly, little guy.

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The appointment then changed direction to the path we had prepared for: the biopsy. We took turns holding Tyce and signing paperwork today, but that form, the one for consent, was handed to me. I asked if parents were to be present for the test, because I was becoming more aware that this might be uncomfortable for our little guy. I felt my insides quake and I was afraid. I didn’t want him to hurt and I didn’t want to watch. I was afraid.

They left the decision up to me, and in my fear, I made the wrong decision. I ached as I kissed him one last time on that same spot that is balding (maybe because I kiss him there so often?) and handed him to the ever-so-comforting PA. But then, when I heard his screams seep across the hall, I knew I should have been in there, talking to Tyce from across the room, telling him he was brave.  Maybe so I’d also remember that I was.

I stared at this door, listening to him cry from the other side.  Nick told me to go but I didn’t want to be a sudden distraction for the people administering his care.

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The doctor came to get us as soon as the test was over and I bolted to Tyce with the fuzzy blanket we’ve been carrying to all his appointments. The doctor chuckled; in my haste, I left all the bags and carseat for Nick to gather. I cradled his little face to my chest and he calmed immediately. Soon he was asleep and I felt all the muscles in my neck relax and yield into a headache. They warned us that sometimes the samples are insufficient and the test needs repeated but I let all that fade into the background. They took his vitals and taught us how to irrigate his bowels twice a day until the test confirms our next steps. For now, we were done.

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We used some Christmas gift cards to grab a quiet lunch.  I ordered pasta; rare for me but I was so craving something comfortable.  On our drive home, we once again came across this spontaneous worship from Bethel, which brought such renewal to my bones. From the tip of my toes, to the top of my head, they’re going to know I love you…  There’s a line and we’ve crossed it.  Some would say that we’ve lost it. But I’ve found my joy!

Any weariness was erased as my heart knit with Jesus and my husband in those moments (and was finished with a good long nap this afternoon).  I know so many of you have been waiting for an update and I tried earlier, but I kept nodding off.

We expect the biopsy results on Friday (he warned us maybe Monday, to which I warned them how persistent I could be on a phone.)  He is resting how and has fed twice since his test, so hungry he’s slurping on his fist.  Music to my ears.  He seems to be uncomfortable at times but this is familiar territory from his last procedure.

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There is so much on my heart from today, from you all, in the millions of ways I see Jesus using this to tie together His family and to bring hope and courage to us all.  Maybe tomorrow.  This moment as I write is made for rest and laughter.  New Years Eve is here.

I love you, all of you.

To Overcome

Tyce hasn’t been eating much today–small little servings, here and there. We are in a holding pattern until the next diaper, which I was hoping would have been here by now.  At this point it has been over 48 hours since a thorough diaper.  A few small blips but nothing substantial.  He has given us several full grins today, which eases his mama’s aching heart.

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I have spent quite a bit of time in waiting rooms throughout this process. It seems all the TVs are tuned to the Hallmark Channel Christmas programming.  There’s one movie that I always catch, in 30-minute intervals here and there.  I called Nick yesterday and begged him to find a way for me to watch the rest of Angels and Ornaments…cheesy or not, I had to know how that darn movie started and ended!  He handled it, and last night after the children were asleep, I endured enjoyed that cheesy movie in its entirety.  Itch scratched.

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Today I almost crumbled under the weight of it all. Due to a perfect storm with our insurance company, I’m writing this in an uncertain moment that Tyce’s care will even be covered by our insurance policy. That is scary, as this could be an ongoing journey and will surely be highly expensive.

So, like every day before today since this whole thing dawned, in came the sniper, with a sneak attack that found its target.  I crumbled and stressed.  I promise.  There are witnesses.  I hit the floor.

It wasn’t pretty.

It was a while before I remembered my armor, of Him and His thick presence, all over me.

…Hold fast what you have, so that no one will take your crown. He who overcomes, I will make him a pillar in the temple of My God, and he will not go out from it anymore… Rev 3

I told you the Lord has asked me to let you watch.  Not because I have any intention to be admirable on this climb, but because I have full confidence that He will be.  Ironically, the thing about doing this whole journey so transparently is that now even my responses to my private moments are keenly in the forefront of my mind.

I still walk around sometimes as though ashamed of my humanity, forgetting entirely that our Father, in His great love, created humanity. We were intentional. My most vibrant life is hidden behind the heartbeat that me, exactly as I am, when surrendered to His great love, is the platform for His glory.  I say it to Nick over and over: I just want them to see His glory.  I want them to know who He is!

I have not once prayed for the mountain to be moved, though He already has lightened our load in many ways, because so many others pray for our comfort.  The only prayer I can utter is for the strength to climb. To overcome.

Each moment, I take my broken doubts and my anxious scrambling and allow them to break me open.

Each moment, my trust and hope in that dark place, a monument.

And a seed of faith, that the identity and calling of the Lord on our young Tyce be fully made manifest among us. I will not permit a single word of the Lord within him to fall from our minds. This is simply the beginning of his story.

My Father has never once left a thing unfinished.

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Bright moments: Dax peed in the potty today, all for the reward of wearing his fireman rain boots.  He also stood patiently at my feet with his face upturned and his lips puckered for several minutes, until I leaned down and kissed him.

Aly’s wearing her blonde hair as close to an Elsa braid as we can manage. So she’s happy too.

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Tomorrow is the biopsy.

Biopsy Scheduled

For those who are checking here to stay updated, here you go.

  • I called Hershey Pediatric several times this morning to schedule Tyce’s biopsy.  When I finally got through, I didn’t even get to finish my name before the scheduler started to chuckle. She was getting ready to call me, she said–and thought there must have been six messages from Tyce on her machine.  I laughed and blushed–and confessed to only three of them.
  • Tyce’s biopsy is at 11:15am Wednesday am.  We have no idea whether his surgery will be planned immediately or scheduled, and the scheduler said that will depend largely on the results of his test (which they’ll probably read promptly due to the next day being a holiday).  Thanks to Nick’s mom (Jeanie), who will watch the kids overnight that day.
  • Why is it when you are delivering a baby, they seem so big, but when you are looking at his little body and thinking surgery, he suddenly seems so very small?
  • Tyce’s disposition has improved.  I believe his rough day on Saturday was largely due to his enema test.  On Sunday morning I kept him as comfortable as possible and was rewarded with 2 large diapers, which for obvious reasons greatly improves his ability to eat well.  We are on the down side of his cycle as I write, waiting for his little body to work through his next movement.
  • I threw my iPad in the washer today with a load of laundry. When I remembered, I vaulted from my seat to the washer, where it was submerged in 18 inches of water. Ooops/Sighhhh.
  • I worked through Tyce’s birth day bills this morning, and sometimes it’s troubling to know that the bills have only begun to arrive for this adventure. That’s the flesh side of me.  But I felt the Lord whisper to me yesterday that He had already made a way.  Since that moment, I haven’t worried. He entirely lifted that weight from my shoulders and I am so grateful to be so known by my Father.  I feel freed to focus on our little guy, without concern for the backswing.
I was so very thankful for this moment of today.  The good moments are so good.
I was so very thankful for this moment of today. The good moments are so good.

The Father is so, so very close to us, both in His intimacy and through so many of you. I feel so compelled to stand transparently before you in this time, both in my broken moments and in my courage of Him. He has asked me to stand here and let you watch. Every day, at some point, a simple thought pierces through my armor like a sniper and for a moment, in its seeming validity, I am undone with worry or fear. And each time, in stillness, He is faithful to dismantle any authority other than His. And mine.

The joy of the Lord is my strength.

In Him, we are. To float into this complex system of medicine, insurance, testing, scheduling, finances–and all the relationships between those fortresses–can be very intimidating.  Freedom means nothing if it can be so easily harnessed by opposition. When those things come out against me, I almost dance to see my roots hold so firmly.  …I am a tree, bending beneath the weight of His wind and mercy…  My roots were hard-won. I am so relieved in their stability and nourishment of me, here in difficult places.

Sometimes I hesitate to be so bold of courage for fear of new challenges. I keep my head down, braced for the other shoe to drop. Or exhaustion silences my dance. But I keep hearing Kelanie’s song, one of my favorites: I am a light, the fragrance of Christ, changing the atmosphere. Come watch me burn, I am a sign and a wonder. Sons, lift your chins in Who He Is and who you are. Step, hope, conquer, endeavor, endure. Love bears all things, believes all things, hopes all things, endures all things.  Love never fails.

The featured image on this post is a photo of some letters I’ve received as the Lord speaks to others about Tyce. Each voice, each text, each message you have sent…Thank you.  Your strength is ours.

And to all those suffering health difficulties, sickness, or disease in this time, may the Lord take your hand and lift you to your feet again. May he sharpen your weary sword of joy and hope, and may He sing new, fresh vision over your sunken shoulders.  May your words, every word from your mouth, give life only and bring forward your courage. There is yet wholeness ahead.

Baby with a Big Belly (Diagnosis of Hirschsprungs Disease)

Thijs (Tyce) is our 3rd baby, so I don’t run to the doctor for every sneeze and cut anymore.  So when I started to notice our little guy’s big belly, I didn’t really react or even worry.  We were on the heels of a recent bout with severe jaundice, and I was just thankful he was eating and sleeping normally again–the belly was an afterthought.

Eventually, it kept occurring to me that maybe he wasn’t growing as quickly as I thought our other two had. Of course, who trusts the clouded memory of sleep-deprived mothering days gone by?  He was content, though rarely as hungry as I thought maybe he should be.  He was six weeks old and still fitting into his newborn clothes.  Progressively, it laid in my heart that maybe something was off.

Then my mom babysat for me one December night so I could take our daughter Aly to a concert. It was a long night and I got to her house tired and hurting from a headache, and my typical ability to filter incoming comments was down.  As I tucked Tyce into his carseat, Mom gently mentioned his belly to me, with a familiar edge of concern in her tone.  That night, for the first time, I worried.  I spent time on Google and meandered down really foolish paths, jumping all the way from my casually abnormal baby to pediatric oncologists.  The next day, I called the doctor.

We have very healthy kids who typically only need once-yearly well-baby checks and vaccination appointments. I manage colds and other childhood ailments from home and have never needed to branch into pediatric care.  I took Tyce to my favorite general practitioner.  She examined his growth and I was right–he wasn’t growing like my other kids had, though he was still in the range of low-normal. His development was on track as well–he was starting to lift his head and had begun to smile.  I wondered if I was foolish. IMG_0014_2

But that belly.  They asked if he was having regular bowel movements–but how do you answer that for a breast-fed baby? I remembered a phase in Aly’s infancy when she only went once a week. Was he fussy? No–rarely. But gassy?  Yes.  You could tap on his deformed little belly with a stiff finger and it sounded hollow, like a watermelon. You could see the ripples of enlarged intestine under his skin and sometimes it waved or changed form after he ate.  Sometimes it was alarmingly swollen; other times it seemed almost normal, except its shape.  After a good bowel movement, it would noticeably deflate for a while, and his appetite returned in force– each time, the belly slowly filling again until it was relieved in a violent diaper.

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These pants “fit” his belly before he filled his diaper an hour later.

The doctor ordered an ultrasound, to check his organs and intestines.  When that came back normal, they ordered another ultrasound, this time looking specifically at his pylorus. This, too, was normal.  During this time, I started leading each feeding with a dose of simethicone (gas drops) or Tummy Calm.  This seemed to improve his ability to process some of the gas in his belly and he pooped a little more often.  On the urging of several family members, I asked my GP if it was time for a referral to a pediatrician.  We both were ready for a second opinion.

Our appointment was prioritized, scheduled for the morning of Christmas Eve.  Nick was able to come with me.  The pediatrician took one look at his belly and called it “remarkable.”  We left her office with an order for a upper-GI and abdominal series of x-rays, which I scheduled on my way to our family Christmas.  The next available appointment was five days away, but the manager took pity on our little guy and got us an appointment for the day after Christmas.

The xray room was cold and sterile and intimidating.  I snuggled Tyce over my bulky lead vest, fighting tears and for once was thankful for his reduced appetite.  A compassionate tech quietly places a box of tissues next to me.  They hadn’t wanted Tyce to eat for his appointment, so it had been four hours–not that he noticed.  Nick and I helped prop him up for his initial set of standard xrays and then waited while the radiologist looked them over.  Then we would do his barium GI, during which we would feed Tyce contrast material in a sort of milkshake form through a bottle.

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I am so grateful that radiologist was paying attention.  One look at all the gas in that belly and he second-guessed introducing barium into his intestines, which were already backed up.  He called the pediatrician and after about twenty minutes, the doctors agreed to change his procedure to a barium enema.  I’m convinced this was a miracle on Tyce’s behalf–I know that barium in his belly could have made his condition worse, maybe urgent.

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It wasn’t long after that the radiologist pointed out what he thought was evidence of Hirschsprungs disease, a congential condition where the nerves in the colon do not completely develop.  Because of this incomplete formation, the colon is not able to properly propel food along its course, creating a kind of obstruction.  The treatment for this condition is surgical. As they removed the catheter from his bowel, large amounts of gas and stool followed.  I was relieved to have his bowel cleared, for whatever time that would buy us.

Twenty minutes after that test, the peds office was on the phone, for an afternoon appointment, where they referred us to Hershey for further treatment.  Nick went to work and Gramme (my mom) Eberly came with me to the appointment, which (Aunt) Amanda stayed with Aly and Dax at home.  Mom’s company was something I didn’t know I needed.  Her comfortable familiarity means I can talk if I want to, and not if I don’t. I can cry or be angry or sing.

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Ironically, after that test, Tyce has been noticeably less content. For the first time, he seemed to mind the mounting gas in his belly and was fussy for much of the time he was awake.  Also his sleep for the first time seems more disturbed and his cry indicates pain. It is sometimes agonizing.  At the moment as I write, I am praying for a diaper relief, as he is very uncomfortable with very little appetite.  When he doesn’t eat, it compounds my story, as I need to pump to maintain supply.

Next is a bowel biopsy, the final step to confirm Hirschsprungs.  This will be scheduled as soon as possible.

I decided to blog this because I thought it might help someone.  I didn’t find much more than clinical sources for Hirschsprungs during my internet research; I thought in the future, maybe parents encountering Hirschsprungs with their children might find help or comfort in our story.