All the Goodness

Through this whole nightmare of surgeries and hospital stays, there has truly been so much good.  My last post was all about our struggle with changing Kyrie's colostomy bag.  I wish I could tell you that problem has been solved, but not yet.  In fact, there is a bit of a learning curve for me because the dumb thing keeps coming unattached when it shouldn't be, and hence, we have to change it again.  It's a combination of my inexperience and Kyrie's wildness.  Only one of those is likely to change :)

However, tonight we had to change it, and while there was a lot of tears in anticipation, I think we may have finally come up with a strategy that works for us.  I started saying, "1, 2, 3, Peel... 1, 2, 3 peel.... 1, 2, 3, peel....etc." and he is ready for the pull of the adhesive.  It take a lot of 1, 2, 3s, but he didn't cry during the peeling!!  It was amazing.  I'm so hopeful that this can be the new thing.
I'm also hoping that I get better at applying it so it doesn't come off quite so quickly.  

Aside from our progress there, we have so much to celebrate.  The biggest thing is that Kyrie is healthy today.  The colostomy bag helps his digestive system work properly, which is hasn't done in four years.  So that is HUGE!  Because of this, his appetite is slowing growing, and my picky little bird eater is turning into a picky little regular amount eater.

My boys are all under one roof.  You will not believe how much they missed each other!  Seeing them reunited is incredible.  Kyrie got the spark back in his eyes, and the silliness came back in his personality.  The first night home, the boys stayed up WAY too late chatting away in their bed about lots of four year old nonsense.  Drove me crazy because I knew my Kyrie needed the sleep, but seriously?  Those boys are just too stinking cute for their own good.

These three.  

Can NOT keep this man out of the water.  

Quiet time while Bez sleeps. 

Lots of pajama time over here. 

Out of the house!!  Strawberry fields forever :)

These two rarely leave each other's sight. 

The support we've had so far from our friends and family is too much to even describe.  Between our family members, friends, and church members, I haven't cooked since we've been home.  This has been such a huge blessing to us.  I've been able to spend time with my three boys, which our family has desperately needed.  Kingston and Ezra are particularly needy with David and me having been gone for so many days.  I've been able to take the time I need to learn how to care for Kyrie's stoma.  I've been able to spend time doing things I really don't care to do - like figure out insurance nonsense and call his different physicians. Our medical delivery company has been delivering packages daily to our house.  They are quick and that is awesome.  But new supplies are brought each time, and this only adds to the learning curve of Kyrie's stoma care.  And I've needed to be on the boys pretty much all day to settle down and stop attacking each other because Kyrie is still healing.  The meals have been such a blessing.  People stop by our house to drop off cookies.  Our neighbors brought the boys a gift just today.  David's staff sent us a beautiful care package with fresh fruit, gift cards, snacks, and and activities for the boys.  We've received countless gift cards and encouraging notes.  People have emailed, and commented on Facebook.  These little things have lifted us up and carried us through some of the toughest days we've had.

And my Kyrie.  What a little trooper.  Put me in his shoes and I would've been in bed for a week.  I would've cried over the colostomy.  I would've been in pain for days.  I would have been a big wreck.  A baby.  A total whiny mess.  But my boy is so strong.  No complaints besides minor aches and pains from the time we walked in our door.  He's struggled with the adhesive changes, but right after my sweet boy bounces back.  He plays so hard and has been dying to go in the water all week.  He could care less about the stoma and does amazing when I have to empty or check it out.  I treat him like more of a patient than I need to.  He's amazing and resilient.  I'm so proud of him.  He's such an incredible little boy.

We're getting back into our new normal around here and it feels really good.  David is done with work now, so I have my partner full time.  Kyrie is acting like his normal self, and my family is all under the same roof.  We're healthy, and safe, and have a brand new healthy baby girl on the way.  Things are good.  Things are really good.

The Worst and Best of It

We are home.  Thank you Lord, we are home.  We got to come home Monday afternoon, after we took a quick stop at my OB for our 20 week ultrasound.  We found out our fourth baby is a girl, and we got to have all our other babies under the same roof once again.  It was a good day :)

Since then we've been through the best and the worst of it.  I'll start with the worst, because then I can end on a positive note.

The Worst
Last night I had to change Kyrie's colostomy bag.  I was thinking I would have until probably Thursday.  The Ostomy Nurse changed it Monday in the hospital, and it was awful.  Like horrifically awful.  David and I had to hold him down while she did it, so that was a great peek into what our next two months would be like.  Thrilling.  I am not sure that removing the adhesive is all that painful, more uncomfortable.  He is just terrified.

Then again, I've never had to remove a colostomy bag with extra adhesive tape around the adhesive that comes with the colostomy bag.  So what do I know.

Anyway, I thought I had a little time.  We had a home visit nurse come, and she was going to come back to check in after I changed it.  My cousin is a nurse, and she offered to help me when the time came.  I felt super comfortable with the whole process, besides the torturing my child part.  Because how do you prepare for that?

Anyway, Tuesday night rolls along and the boys are supposed to be laying in my bed watching TV while I put Ezra to bed.  I come back into the room to see Kingston on top of Kyrie's stomach (NO!) and Kyrie crying in pain.  Oh brother.  Poor Kingston was just being a four year old boy, and he wasn't even being super rough.  But poor Kyrie is recovering from surgery and has a very sensitive tummy right now because of it.  And this led to me having to change the colostomy bag.  The nurse said at any sign of a leak, I needed to just change it, and not try to reseal or anything.  And did I mention that David was at a board meeting?  So I was running solo?

So I get all my stuff, and Kyrie starts crying before I even begin.  I went super slow with the adhesive, and used these adhesive wipes.  But there were still hysterics.  Being four, he's still working on sharing his feelings, but he is SUCH an expressive little boy.  He was shouting lots of things at me.  And I know he was just hurting and scared and didn't know how to communicate that.  Or actually he did.  He communicated it quite well. "MOM YOU ARE NOT DOING A VERY GOOD JOB!  MOM YOU ARE HURTING MY FEELINGS! NO! NO! MOM! NO! DON'T PEEL IT!  STOP IT! STOP IT! STOP IT! I DON'T WANT YOU TO DO THAT TO ME!"

Kingston didn't know what do think.  I have no idea if Ezra slept through it because I wouldn't have heard him crying over Kyrie.  With bargaining, distracting, holding down of limbs, trying it quick, trying it slow, trying to just be stern, nothing helped. And what should take 10 minutes, tops, took me about an hour.  Maybe more.   David came home at the very end and got Kingston into bed while I finished up with Kyrie.  As I put Kyrie into bed, he said in the tiniest voice ever, "mommy, will you lay with me forever?"

As I held him there, I couldn't hold the tears back any longer.  As they silently streamed down my face, Kyrie talked through his feelings.  "Mommy, I didn't like that.  You can never do that again, okay mommy?  Don't change my stoma bag anymore.  Okay mommy?"  What could I say?  I have to do that a couple times a week for the next two months at least.  I just squeezed him close and told him I loved him and told him I did my best and I'm so sorry it hurt.  "No, mommy.  You did not do your best."

Oh my sweet boy.  I love you so much and I promise we will get through this together.  I promise there will come a day when you never think about me pulling ouchy tape off your skin and I promise these days will be history one day.  I hope to tell you about it as an adult and have you not remember any of it.  I promise all this to you because I need to hear that promise for myself too.  We can do this.  I promise we can.

-------------

And now I'll save the good for tomorrow.  I'm emotionally drained living through that again.  And I've used up my limit of quiet time while Ezra naps.  Kingston and Kyrie are ready to be wild again while I tell them to settle down, and be careful, and watch out for Kyrie's tummy, and stop that, and be gentle, and no jumping off the couch into a pile of pillows.

I know this post was a bit of a downer.  But I promise there is also SO MUCH good going on here.  Lots to write about that is positive. I promise to share that tomorrow. This is our one huge hurdle right now, but the rest is truly going wonderfully.  Thank you again for your thoughts and prayers!!

And Now it's Sunday

All the days are kind of blending into one long day here.  It feels like Kyrie just had his surgery yesterday, but it is definitely Sunday.  Hooray Sunday.   Every day has it's own challenges, but we are making some good progress.

Yesterday Kyrie was pretty low key.  We tried to get him up and walking as much as possible, but he wasn't interested.  He was able to eat regular foods yesterday but was mostly interested in dry cereal.  He had quite a few high pain moments, which are so tricky to manage as a parent.

How bad is this? Is it going to pass in two minutes?  How fast will this tylenol kick in?  Is it time for the heavy stuff?  Do I really want to give my four year old narcotics?  No.  Let's wait.  Wait... should we really wait?  He's in a lot of pain.  Oh, maybe it's getting better.  No - not better.  Do I call the nurse again?  This can't go on forever.  I can't believe it's going on forever.  Oh, okay, he's asleep now.  That wasn't so bad.  Well, it was kind of awful.  Can we really go home if he is still hurting like this?  

But besides these moments, the rest of the day he's fine.  This happened about 4 times yesterday.  Enough that Dave and I were thankful we were still at the hospital.  Infrequent enough that we're hopeful it's just part of the healing process.

Today he's only had one or two moments like that.  But I'm at a loss.  I don't know how to help him.
It's so hard to soothe him when he's so uncomfortable.  The nurse thinks it could just be gas trapped that hasn't found it's way out.  If that is the case, I for sure don't want to give him heavy pain meds.  But a four year old has a really hard time determining if his tummy hurts because of gas, or at the place of his incision, or if it's a sharp pain, or a general tummy ache.  It all comes out tearfully as, "My tummy hurts."  And at this point all that makes him feel better is snuggling with mommy and eating those stinking Cheerios!  Not the cake, pie, or ice cream on his meal plates.  And I would totally let him eat those first.  Just plain Cheerios.

Today we got outside for a walk and checked out the courtyard.
Plus, now that the IV isn't hooked up, he gets to wear his own clothes,
which he was thrilled about.  

 At this point we're still hopeful that we get discharged tomorrow.  There was one small hiccup tonight that makes us a little nervous that we might get stuck longer for observation.  I mean, we want to stay if it's medically necessary.  But all the Stefaniches are ready to be back under the same roof.

In the midst of Kyrie's biggest pain episode tonight, his nurse was asking me some questions about the output of his stoma.  There is a lot of evidence that it's working, but not as much action in the last 12 hours.  She wanted the surgeon to know and come check him out since he was complaining of so much pain (aka - crying and was unable to be comforted.)  Kyrie doesn't exactly tell the doctors and nurses how he's feeling when they ask.  It's either quiet shy Kyrie - who is feeling pretty good.  Or sobbing, crying Kyrie, who is obviously not feeling good.  The surgeon checked him out and seemed only a little concerned.  His tummy is mildly distended again, so she said if its any worse tomorrow that we'll do another X-ray.  So we're still hopeful that we'll get to go home tomorrow, but we'll see.  Every one of us might go a little stir crazy if we're stuck here another day and night, but at least we have my 20 week ultrasound to look forward to tomorrow.

Aside from the distended tummy and very rare spikes of pain, my boy is feeling much better.  He's walking around, and playing so much more.  And today he started laughing and giggling again for the first time since we got here.  Which quickly turns to whimpers because laughing hurts when you have an incision on your tummy.

Today I saw many glimpses of my silly, happy boy.  It was
just the healing my worried mommy heart needed.  Just look at this face!

We're getting there :)  The end of this hospital stay and the beginning of normal life is around the corner.  Thanks again for all of your prayers and support.  We feel so blessed to have so much love and support right now!

Where we are Now

I don't even know where to begin to explain our journey since our hospital stay last week.  I can honestly say this is one of the most difficult journey's I've had as a parent.  And that is saying a lot because I've flown on a 24 hour flight journey from Ethiopia with twin 7 month old boys that didn't sleep.

Watching your child in pain and not being able to do anything about it is the worst feeling ever.  Knowing they have to go through surgery, and recovery, and more surgery and more recovery is awful.  You just want to go through the whole thing for them.


On Monday I received the call from Kyrie's surgeon with the results from his biopsy.  He told me that Kyrie does in fact have Hirschsprung's Disease.  This is a rare disease of the intestines that doesn't allow your bowels to relax and pass stool. The nerves are there to tighten, but not to relax.  So no matter how much Kyrie tries to go on the potty, he's never successfully been able to poop.  This has been extremely frustrating because he has been "potty" trained for quite some time.  He has been working so hard at it, and it wants nothing more than to just poop on the potty.  And while we were happy to have an answer to his problem, Hirschsprung's was not what we were hoping and praying for.

We have been seeing someone in the Gastroenterology department at DeVos for quite some time, making little progress for Kyrie.  Finally, we scheduled the barium enema, which lead to an overnight stay at the hospital.  Which I wrote about here.  Which lead to the biopsy and these results.


So after the surgeon called with the results, David and I spent the next day in his office for a consult.  We had a million questions.  We still do.  It's a complicated disease, that can mean a lot of different things for different kids, depending on the severity of the disease.  It's something that in the United States is usually caught in the first 48 hours of an infants life.  Because of Kyrie's journey in life, it took us quite a bit longer to get here.  

Kyrie had his first of two surgeries yesterday.  He had to come in Thursday for a clean out, which was rather disastrous.  It consisted of one horrific procedure after another.  Lots of tears were shed and very little clean out process was made.  Due largely in part to Kyrie having Hirshsprung's.  We got very little sleep Thursday night at the hospital because Kyrie was in a lot of pain.  The next day we sent Kyrie into surgery feeling pretty anxious.  For this first surgery, the surgeon had to determine where the diseased part of the intestines ended.  He did this by making some small biopsies as he went.  A pathologist was in the operating room checking the samples on the microscope as he went.

Since Kyrie's intestines have been dealing with constipation for over four years, they are very stretched out (to 4X the regular size) and are not performing at their highest potential.  For this surgery, Kyrie has to have a colostomy bag put in.  This way his intestines will have time to rest, hopefully shrink back to regular four year old size, and get back to their best squeezing ability.  After two months or so, Kyrie will have a second surgery to remove the colostomy and put his intestines back where they belong, without the Hirschsprung's diseased parts.

Pre Surgery Snuggles

We're out of surgery now, and recovering in Kyrie's room.  We have to stay here until Monday - which seems like an eternity away.  We have to make sure Kyrie is eating well and his stoma is working properly.  We also have to make sure Dave and I have learned all the proper care for Kyrie's stoma and colostomy bag before they'll let us leave with him.  Which is a good thing.  But my boy is already aching to go home and be with his brothers.

Pre Surgery Nap

I could not be more proud of my boy.  He has been through SO many awful procedures.  They were necessary, and the doctor's and nurses here have been wonderful.  But the procedures have been awful.  AW. FUL.  He's had two surgeries in two weeks with another on the calendar.  He's had multiple IV's and tubes requiring the application and removal of adhesive tape and band aids.  This might not seem like a big deal, but it is HUGE.  Taking off any kind of tape, band aid, or adhesive for Kyrie is like scratching him with knives.  He's hysterical.  I don't even use band aids at home for this reason.  And when he gets them for immunizations or something they stay on until they come off naturally in 3 months.  We have to take extreme care when dressing or touching him near band aids in the rare chance we might accidentally touch it and give the false impression we might remove it.  So the tape thing has been a big deal.

And through it all he's been such a brave boy.  He woke up from surgery with a colostomy bag.  We did our best to prepare him, but it's hard to explain something like that to a four year old.  And I think most adults would struggle with this change, and take some time getting used to it, let alone the body image concerns.  Kyrie has been a rock star.  He was a little nervous about it at first, but has been doing great with it.  He talks to me about it and doesn't seem to have a problem with it at all!  So amazing!

In Recovery after surgery

So now we recover and wait to go home.  We want to thank you in advance for all the prayers and encouragement.  We are feeling so supported by our friends and family and could not possibly manage this without you.  So thank you.  Thank you for the visits, the gifts for Kyrie, caring for our other children, meals, prayers, gift cards, support, and love.  We seriously can't thank you enough.

At this point we can really still use your prayers.  Please pray that Kyrie's body can get back to normal in two months so we can get the second surgery done and recovered from before the new baby comes.  I want Kyrie to be able to have all our attention, and I want to be able to stay in the hospital with him during that surgery.

Finally eating

Please pray that Kyrie continues to do well with the colostomy.  I know the day to day care will be fine. But every few days or so I have to replace the equipment.  Which includes a significant amount of adhesive removal, cleaning, and reapplying.  I don't know if I can bear hysteria every few days.  It truly doesn't cause him significant pain.  He's just afraid of it.  Pray for peace for him while I have to do that over the next few months.

And just pray for our family.  I worry about Kingston and Ezra and being away from them for four nights.  And then again for the second surgery.  I know they are being well taken care of, but I fear they don't understand where their parents and brother are.  Pray for David and I as we try to juggle the multiple doctors visits, surgeon consults and appointments scheduled.    And pray for Kyrie to continue to get better with each passing day!

And on top of this crazy history of our stresses the past week and all these prayer requests, we have so many praises.  We're thrilled to have a diagnoses that is treatable.  We're so lucky to have such a wonderful Children's Hospital in our backyard.  The timing is such a blessing because I can be available for hospital stays and 24 hour care once we're home.  This has been such an ongoing problem, and this diagnosis could have come now, or 5 months from how.  We're so glad that it's happening now, before the baby is born so we can have everyone in top health before the littlest Stefanich joins the chaos.  And we're so blessed by our family and friends.  Thanks again for keeping us in your prayers.

Happiest boy ever once he got some Fruit Loops

Lots of naps for my boy

Our Unexpected Hospital Stay

The following is a post I wrote last week Thursday (the 11th) while in the hospital with Kyrie.  I never shared it because we've been through a gauntlet of emotions and test results since then, and we just weren't ready to share with the world yet.   I'll be following this post at some point soon with the latest update.  We're in the hospital now (Saturday) and Kyrie is doing really well.  He's such a tough little man, and I'm so proud of him.  


We've been in the hospital with Kyrie since 6:00 last night.

Let me start by saying, he's okay.  He's a tough little cookie and he's not in any health danger right now.  But he's been struggling with a chronic illness that has sort of come to a head.

I haven't written about my little love bug and his health issues much because I want to respect his privacy.  One day I hope my boys read my blog posts and enjoy the stories I've told about them.  I don't want Kyrie to look back at this and say, "Really mom?  You had to share those details?"

So I'll tell you as much as I can by telling you as little as I can.  We've been seeing a specialist for some time now to try and figure out some of Kyrie's tummy troubles.  We've been getting nowhere.  In a bit of a last ditch effort, our doctor suggested doing a barium enema to rule out a possible illness.  Her thoughts were that Kyrie does not have this, so the test will confirm that and we can move forward.


So yesterday morning we came in for the barium enema.  If you know anything about four year olds or enemas, you can imagine it went about as smooth as getting a porcupine to put a sweater on.  But Kyrie was a trooper.  The technician that did the test showed us the X-Rays and told us the result on the spot.  Unfortunately he could not rule out Hirschsprung's Disease, which was the original goal.  He also could not affirmatively say that Kyrie had it.  He told us most likely we'd be hearing from the surgeon team because now Kyrie would need a biopsy to see if he truly had this disease or if we need to continue with other treatment.

We came home after that and he was very uncomfortable.  He couldn't pass any of the liquid he was pumped full of.  His discomfort turned into some pretty severe pain, and then he started vomiting.  After contacting his GI doctor, they suggested we take him to the ER.

He was admitted last night, and here we are now.  Overnight he was able to find comfort.  But they have scheduled a biopsy for today to verify or rule out Hirschsprung's Disease.  That will consist of surgery.  Which is obviously very scary for us.  We're hopeful Kyrie does well and we can take our sweet boy home!

How Boys Love

When I became a mom, I learned a new kind of love.  An all consuming, can't breath kind of love.  Being a mom is the most incredible and important job I've ever known.

But I've also learned another kind of love.  Watching my boys love each other has been the most rewarding thing.  I always knew Kingston and Kyrie would have an incredible bond.  They are twins.  They shared a womb.  They are the only person on the planet who has known the other for their whole life.  They've known each other longer than they've known me and longer than I've known them.  They've traveled the world together and always had one another.  So I knew they'd have a love like no other.

But what has surprised me more than anything is the love Kingston and Kyrie have for Ezra, and how he loves them back.  I'm not sure why this surprises me so much.  I knew they would love each other, but I sort of thought that was something that would happen as they grew older.  I thought that while Ez was little he would probably be more bothersome than anything for the older boys.  Take their toys.  Demand I hold him when they want to play with me.  Pull their hair.  Get jealous when they snuggle with me.

And he does all these things.  Oh, Lordy, does he do all these things and more.

But they adore him.  ADORE.  HIM.  Before bed and naps, it's hugs and kisses all around.  "Ezzie? Want to hold my hand so you don't get hurt?"  "Mom? Can I give Ez my crackers?" "Ez, want a kiss?"  They ask to rock him - which they're way to small and he's way too big for.  They give him their little stuffed animals.  They tell me the second he's into something he shouldn't have.  They include him in ALL their crazy playing.  And he follows them EVERYWHERE.  If they laugh, he laughs.  Even if he doesn't know why.  If they run, he runs.  When they're gone, he asks me about them nonstop.

Kingston calls him "cutie" all the live long day.  "Come here, Cutie!"  "Hi, Cutie!"  "Cutie, Cutie, want to play legos?"  It's so sweet and adorable.

Truly, I hoped my boys would all be best friends one day.  I thought about how I would foster their friendship as they grow.  But they beat me to it.  They love each other so much.  They're brothers.  They're playmates.  They're friends.  Best friends.

I couldn't be more proud.  And I can only hope this bond continues with baby number four.

And then the Cops Came.

So here we are, one of my first nights of summer break.  David and I were watching TV in bed, and I had just fallen asleep.

The kind of falling asleep where you can feel yourself drifting away and it's awesome.

I was abruptly woken up by Dave whisper shouting at me as he huddled down by the window, lifting up the bottom shade.

"KENZ!  KENZ!! Go in the boys room!!"

What?  Huh?  I was so disoriented and confused.

Dave got up to use the bathroom and noticed flashlights in our backyard.  Like lots of them.  So naturally he went into "save the family" mode.  He called our neighbor to come over and help him scope out the invaders.  I just stood by the door, in half asleep confusion.  I was supposed to protect the kids.  I just stood between their bedrooms unsure how to begin this "protecting".  I couldn't think.  Who is here?  Flashlights?  You're going where?

I saw I had a voicemail on my phone, so I tried to listen to it.  I could only get through the first line - which was my friend across the lake saying "sorry it's late but..."  And then it cut out.  Like 5 times in in a row.  My face kept hitting the settings button or something and my phone was going to the greetings menu.  My face doesn't function well being woken out of a dead sleep apparently.

Dave was quickly getting dressed - while on the phone with the neighbor - while I stood in the door.  And then I saw flashlights IN the house.  In.  Side.  Our.  House.

I was freaking out as I tried to whisper shout for Dave, get my phone to work, and not wake up the kids with my hysteria.  And then the door bell started to ring.

I know it's dumb.  But I thought the burglars were doing it.  Because if you were going to break into somebody's house, you would ring the doorbell.  Right?

Then I finally got my voicemail to play.  Our neighbors saw a flashlight inside our house from across the lake (we have a big picture window) and it looked suspicious.  So they called the cops.  The cops were at our house checking for anything out of the ordinary.

The flashlights we saw outside were the cops searching our house and yard.  The doorbell ringing?  Yeah.  The cops.  The lights I thought were in our house were the cops shining their flashlights in the windows.

The flashlight from the inside  that our across the pond neighbors saw?  Well... that was Dave.  He went downstairs to check if the door was locked before going to bed and didn't want to turn all the lights on, so he used the flashlight on his phone.

Dave went outside to chat with the policemen that were here.  Our neighbor that was coming to help Dave fend off the would be burglars came running down the street, yelling "hey!" at the suspicious men he saw in our driveway.  Thankfully the police were not alarmed or worried about this young man dressed all in black charging them.

Dave came inside and told me what all the nonsense was about and we had a good laugh about it.  We're thankful our neighbors across the lake were looking out for us, should there ever be a reason in the future to need the cops.  We're thankful the police came so quickly and were so kind to Dave after all the confusion.  We're thankful for neighbors that will come over to help when there are possible bad guys lurking in the yard.  And we will no longer be using our phone flashlight when we creep around our own house.