Strong and Happy

Babies are incredibly resilient.

tyce_01

9 Months Old  |  Photo taken August 2015

17 lbs

Doing well on many pureed vegetables and fruits. Even starting small bits of table food from time to time.

Getting stronger and almost crawling (any day!)  Update: he went from barely crawling to pulling himself up on his feet at the baby gates in two weeks.

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Babies are incredibly resilient.

After Surgery: Recovery Day 2

2:45am (estimated)
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.

 

8:45am
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.

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His charming little grin has returned.
His charming little grin has returned.

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.

After last night's sponge bath
After last night’s sponge bath

 

2:45pm

Tyce is getting his last dose of antibiotics now
And then
We are cleared to go home.

10:45am
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.

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IMG_0751 stormtrooper

 

 

After Surgery: Recovery Day 1

5:25am
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:

Moments after surgery--waking up from anesthesia
Moments after surgery–waking up from anesthesia
Little boy in big bed... Big boy in a little bed...
Little boy in big bed…
Big boy in a little bed…

 

2:45pm
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.

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4:45pm

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.

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Very good advice. Love that the nurse was so mindful to post this.

 

 

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.

Hirshsprungs belly infant six weeks

These pants
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.