1 Year Checkup

Matthew's 1 year checkup was today. I can't remember the last time he went to a well-baby visit and was not sick!  Today was a good day.  Not much to report.  Compared to his 'peers' (haha...we wish he even had peers), his head is still small (in the 0.57 percentile for head size, that's out of 100), he's still a light weight (in the 0.68 percentile for weight) and on the small side (13th percentile for height).  But Matthew is taking no medications at this time.  Can't remember the last time I've been able to say that!  And though Matthew is developmentally delayed, it is being addressed via therapy.  All is well!

Dr. W commented that it seems as though we've turned a corner.  I'm not sure we've turned the corner, but I do know that when I look in the rear view mirror, the scary events of the past year are getting further and further away.  Thank goodness!  Now I just need to work on not freaking out about the typical ailments and not expecting the worst.   Hopefully that will happen as those events become specs in the rear view mirror. 

Mattie chewing on his birthday card



Happy 1st Birthday Matthew!

Happy 1st birthday to our sweet baby Matthew!

Matthew loves to...
roll around on the floor
giggle at his brother and sister's antics
blow zerberts with food in his mouth
chew on his index 'thumb'
be tickled on his belly and under his chin
hang quietly in the stroller while we cruise the neighborhood
play with his feet and bite on his big toes
watch Daddy jump up and down
be held by Mommy
run his fingers through his hair when his helmet is off
touch and scratch our face
suck and play with his paci
lace his fingers together
and get kisses on his face.

Eating the cupcake

After the cupcake

Birthday Eve

1 year ago today, we were anxiously awaiting the arrival of Matthew.  We were blissfully unaware of the monumental changes that would occur in our lives with his birth.  We naively believed that everything was going to be 'hunky-dory'.  Wow...just wow.

Many days and nights over this past year I feared Matthew wouldn't make it to a year.  Matthew gave us reason to worry.  Like scenes in a movie, I can see the scary highlights in my mind.  The doctor showing us his missing thumbs. That first night in the NICU when he was hooked up to an IV, the NG tube, under the blue lights.  The moment in the radiology lab where the radiologist told us about Matthew's intestinal malrotation...that he could end up on an IV the rest of his life or die.  Holding Matthew's limp body after the Ladd's procedure, watching his pulse oxygen levels plummet and his heart rate skyrocket.  The screaming pain when he took a bottle.  The pale color of his skin the week before his heart catheterization.  "Heart failure."  The machine breathing for him in the ICU after the heart cath.  The swollen, bruised face and the ear to ear incision after skull surgery. 

But Matthew battled through it all with his sweet disposition, his ear to ear grin, his cute dimples, his piercing blue eyes and his beautiful 4 fingered hands. He's made it to his first birthday. We've made it! 

We've had so many blessings.  Matthew, Alyssa, Jackson, each other.  The love and support of our family and friends (old and new).  Caring doctors and medical staff.  Wonderful therapists.  Our kids' loving school teachers and directors.  Supportive bosses and co-workers. We have been blessed!

It was a tough year, but we are so very thankful that we made it, that he made it! We pray it is just the first year (and the most dramatic) of many, many more.  Thank you for following our journey with Matthew and for continuing to keep Matthew and our family in your thoughts and prayers as we enter Matthew's 2nd year starting tomorrow!

The Medical Year in Numbers

3 major surgeries.
102 stitches.
1 minor procedure.
3 nights in ICU.
17 additional nights in the hospital.
1 ER visit.
12 unique medications.
15 physicians/specialists.
Countless doctors appointments.
$250k in medical bills.

I'm thankful for smart doctors, talented surgeons, compassionate pharmacists, caring office staff and good medical insurance. 

Helmet Countdown Wk 7

Helmet Countdown- 7 weeks down, 1 week to go!

7 days.  In 7 days Matthew will be helmet free and we can move on from this chapter of Matthew's story.  I'm gleefully counting down the days! 

In health news, Matthew went to the pediatrician yesterday and as my gut indicated, it is just the common cold.  He also has a secondary infection in his eye and possibly has the start of a sinus infection.  Time will tell about the sinus infection.  We have Matthew's 1 year check up on Monday and will treat it then if it becomes an issue. 

And for some good news, Matthew picked up and started chewing on a teething biscuit this week.  For the past several months, we've put Matthew in his high chair with a biscuit (or some puffs or cereal).  He usually just pushes it around the tray and onto the floor.  Tuesday, instead of pushing the biscuit around, he picked it up, put it in his mouth and started chewing.  I'm not sure how much actually went down compared to how much he was wearing after.  It was an amazing mess, but a glorious moment.  Yesterday, he repeated the process.  Matthew's making good forward progress with his development, slow and steady. 

Matthew eating his biscuit

Sleep Update

Matthew slept through the night 1 night, then awoke many times 1 night, then slept through the night 2 nights and then awoke a few times 1 night.  I'm encouraged because he's waking up less and last night's wakings didn't require intervention.  He soothed himself.  Very good news!  We've been diligently putting him down for naps, which vary incredibly-- 4 hours one day and 45 minutes the next.  I'm really hopeful that Matthew will figure out this sleep thing and we can get into a good groove! 

As one of our therapists mentioned yesterday, a well-rested baby has more energy to play and Matthew needs all the playtime he can get!  It just makes him stronger and helps him acquire more skills.  Last night he rolled all around the living room and he landed against one of our end tables.  Who knew an end table could be so much fun?

In health news, Darren seems to be on the mend, but Matthew still sounds as though he's having some after effects from his cold.  He sounds hoarse, which makes his cry even more pathetic than typical. Since it's been almost a week, we feel it is prudent to go see the pediatrician to make sure it is nothing of concern.  It has been 2 weeks since we've seen our ped, and I was so hoping we'd make it until next Monday to see him at Matthew's 1 year checkup.  I keep telling Mattie that I promise I'll take him to see Dr. W every 2 weeks just to say "hi".  I know they are buddies and he doesn't need to keep getting sick just so he can see him! 

ECI 1 Yr

Today was our yearly evaluation from ECI (early childhood intervention).  As we've been noting here on the blog, Matthew is making good forward progress in his development...he's just a little behind.  Matthew is being transitioned from occupational therapy (fine motor skills) to physical therapy (gross motor skills) and early language development.  We are seriously going to miss our occupational therapist, but we have a plan forward and goals set out for this year. 

Very rarely are we reminded of the shock that we landed in Holland.  After the initial shock, we've just been soaking up Holland and learning how to navigate and find our way around.  We rarely think about the fact that we were supposed to go to Italy instead.  We have been too engrossed in Holland.  Until this week.  As we approach Matthew's first birthday, we are reminded that just one short year ago, we were blissfully ignorant of the ways our lives would forever change with the birth of 'Tres'.  A year ago, we had hoped for a baby that both slept AND ate, little did we know that we would seriously struggle with both of those things and so many more this past year.  Today's evaluation was just a reminder that we are in fact in Holland...a beautiful place, but a place we had no idea we'd ever be. 

No more germs!

I think I'm going to coat everything in the house with Lysol and then hermetically seal it.  No one will be allowed in or out without getting into a bubble.  No more germs!! 

Mid-week I started suspecting that Matthew was coming down with something.  His nose was running, he's been really fussy, appetite was lacking, etc. Likely just a head cold.  Then Darren woke up Friday with a head cold.  Ugh!!  We can't seem to get and stay well in our house.

Yesterday, Matthew took a good hour long morning nap and then a huge 4 hour afternoon nap. He woke up happier and in a better mood than I've seen him in quite some time.  It was totally delightful!  I'm hoping Darren's recovery will also be swift and we'll all be well for a while.

{Slept through the night ticker-- 1-- Yipee!}

Helmet Countdown Wk 6

Helmet Countdown- 6 weeks down, 2 weeks to go!

Yes, you read that correctly. The original estimate on the length of time Matthew would need to wear the helmet was 8-10 weeks.  I assumed he would be in it 10 weeks.  But at our appointment yesterday, the orthopedist gave us the good news-- Matthew's head is now in the correct proportions and symmetrical.  The next appointment will be our exit scan and the last day Matthew will wear the helmet!  Yippee!!

In other news, the 'slept through the night' ticker is reset to 0.  We had 1 glorious night, then there was last night, though last night wasn't as rough as many of the nights in the past month. I'm looking forward to the 'slept through the night' ticker being in at least the high single digits.  (I'm greedy when it comes to sleep!)

Ahhh...sleep!

Just like I have no idea why Matthew stopped sleeping well, I have no idea why he slept well last night.  Nothing changed, but thankfully he slept!  Happiness is!! 

Sleepless Nights

I've already written many times about my affection for sleep.  Some people can get along with little sleep, but I'm an 8 hours a night girl.  My mind gets fussy without sleep.  I only get through the first few months of a newborn's sleep schedule by remembering that this is only a short amount of time...that said newborn will become an infant and will sleep! 

Matthew has woken up many times a night for the past month+ (save 2 nights).  I don't see the light at the end of this dark, sleepless tunnel we are currently in.  We don't know why Matthew isn't sleeping well.  We've tried all the tricks in our bag...letting him cry it out, swaddling him, unswaddling him, putting him to bed earlier/later, using a sound machine, etc, etc.  I just don't understand.  Goodness, how many times have I uttered that statement in the last almost year!?! 

Matthew's appetite has also waned in the past few days.  Not sure if it is related to the poor sleep or not.  I do know it is not an ear infection as the ENT looked in his ears yesterday.  Besides being exhausting, when Matthew isn't sleeping or eating, I worry. I hope and pray this is just typical baby stuff-- teething, separation anxiety, or the like. And hopefully it will pass soon.  

ENT Update

Today Matthew had his 1 month post-tubes follow up with his ENT.  The tubes look good and are expected to stay in throughout the rest of the year at least.  Matthew had a hearing test while there, and his hearing is still 'normal' in both ears.  Very good news! 

Since I still can't hear out of my right ear post ear infection, I asked the doctor when the fluid in my ear might clear up.  His estimate was anytime between tomorrow and 3 months from now.  Not exactly what I wanted to hear (out of my left ear--hehe).  He also indicated that there really isn't anything to do to speed that process.  Ugh.  It makes me more and more thankful that we got tubes in Matthew's ears.  I can't even imagine what Matthew has been able (or not been able) to hear the past 6 months prior to tubes! 

Road Tripping

On Saturday we took a road trip to College Station.  It was a beautiful day.  The kids napped on the drive.  The weather was perfect.  We all had a great time walking around the A&M campus...well, walking and running around campus.  Jackson would run ahead and run back as Darren and I walked and Alyssa pushed Matthew in his stroller.  We got some snacks at the old basketball arena (the student center is under renovation) and sat outside on a bench near my favorite building on campus (the Academic Building) while Jackson & Alyssa played chase with Darren and Mattie & I watched on.  It was a great day! 

On Sunday Matthew and I went on a road trip with my parents to Oklahoma for my great aunt's funeral.  My Aunt Alyce had been sick for sometime, and her passing wasn't unexpected.  Alyce is my grandmother's twin sister and was her best friend for the past 89 years.  For as long as I can remember, they lived either down the block or down the hall from one another.  After my great uncle's passing, it was always the 3 of them...my Grandma, my Granddad, and Aunt Alyce.  I can't imagine the hole in their lives, but I do know that Heaven is an even nicer place because Aunt Alyce is there.  I'm so thankful we went to support my grandparents.  And though we hated the reason, the trip was good.  I enjoyed spending the time with my parents and seeing my grandparents and extended family.  I felt like I was 15 again, riding in the back of the car going to Grandma's house.  Though looking over at Matthew, I was reminded I wasn't. 

Aunt Alyce and Grandma

At the service, there was still snow on the ground from their several feet earlier last week, but it was 65 degrees outside.  My kind of snow!  Matthew did well on the trip, and he liked all the attention from everyone at the retirement village. But he's still not sleeping well.  Now that we are home, we're going to keep trying the tricks to get him to sleep.  Everyone could benefit from a good night's rest!



My kind of snow- 60+ degrees outside



Helmet Countdown Wk 5

Helmet Countdown- 5 weeks down, 5 weeks to go

We are halfway! 

I've been increasingly annoyed with the helmet lately.  It is cumbersome. It makes it harder to love on my sweet baby boy.  When I carry him, Matthew accidentally knocks me in the head with it several times a day.  And it still smells a little bit like a foot. 

But Matthew's had it on his required 23+ hours a day and he doesn't seem to mind it as much as I do.  Another positive is that I think I push Matthew a bit harder with therapy exercises because I'm not worried if he bonks his head on the floor from a sitting position.  And Jackson's taken to knocking on it.  Not sure I want him to get used to knocking on his brother's head, but Jackson likes the sound and Matthew loves the attention from his big brother. 

Cranky

Yesterday I was having a woe-is-me day.  Because of the fluid build up in my ear from the ear infection, I can't hear out of my right ear. Also, Matthew's sleep issues are catching up with me.  It's making me cranky.  And he's been unbelievably cranky too, screaming for what seems to be no reason at all.  Not fun! 

So, last night I was hoping to quickly give Mattie a bath, put him to bed and follow minutes later.  In a not so fun twist, when I was giving Matthew a bath, I started to get dizzy and lightheaded.  I couldn't sit up, couldn't stand, and couldn't turn my head.  It continued until early this morning. Even now I feel like I've had too many adult beverages.  I stumble and can't balance.  I doubt I can walk a straight line.  I'm sure it is an effect of the ear infection, but it is so bizarre.  Thankfully I'm better than I was last night and hopefully it will continue to improve throughout today.

I'm baffled by Matthew's poor mood lately. He's eating well, so I don't think it is his belly anymore.  If he didn't have ear tubes, I would take him to the pediatrician to check for an ear infection.  Maybe he's going through a serious case of separation anxiety.  Who knows!?!   I'm very tired of being screamed at in a language I don't understand and I'm sure he's tired of me not understanding. Whatever the cause, I hope it passes soon!! 

Sleep Issues

With the ailments of the last month, Matthew has gotten out of the habit of sleep.  Last week, during the midst of the stomach bug, he slept through the night twice but that was likely because the meds made him drowsy. That was the first and last we've seen of good sleep for almost a month. 

Matthew is waking 5+ times a night.  Last night I was ready to buck up and let him cry it out but I broke before he did (at the hour mark).  Today I pulled out the books for a refresher on how to get him to sleep through the night, yet again.  I hope and pray we can get it done!

More Good News

Today was a big day of appointments and Jackson and Matthew were troopers.  First was GI.  It has been 4 months since we've seen Dr. L and it was great to see his smiling face today.  I'll always have a soft spot in my heart for him.  He worked so hard to figure out what was causing Matthew's eating problems and he was the first one to notice Matthew's enlarged heart before the PDA was uncovered. 

Dr. L is thrilled with Matthew's progress since the PDA closure.  Though we've had a host of ailments that have slowed Matthew's weight gain (skull surgery, lung infection, 6 day stomach bug), Matthew is holding steady on his own curve and is eating well overall (both bottle and solids).  Very good news!

This afternoon we had a follow up with Dr. T (cranialfacial).  As the orthopedist indicated, Dr. T confirmed that the spot on the back of Matthew's head is just normal bone.  Dr. T is happy with the shape of Matthew's head and will continue to track Matthew after the helmet removal (in approx 5 weeks) and for years to come.  Dr. T said that Matthew's head shape should stay pretty consistent over the years but they monitor it just in case.  Also good news!

Monday we switched things up a bit and Matthew got to wait through an appointment for me.  I have an ear infection and after the day of suffering (thankfully only 1 day!) and 2 days of not being able to hear out of the right ear (so far), I'm so thankful Matthew had tubes inserted!  I can't imagine going through this pain every 3 weeks!!  Poor baby!

I'm a little afraid to say this out loud, but I'm hopeful health is returning to the Hoy House.  Matthew has beat his lung infection and stomach bug.  Jackson's foot is healed.  Alyssa is good.  I'm praying for a LONG stretch of health for our household.  With Matthew's last 2 procedures going well (the skull and tubes), the last appointments being very positive (heart, GI, skull), and Matthew making huge strides with his development (sitting up, holding a bottle, using his hands) we are very hopeful for the future!

Thanks be to God!  And thanks to our family and friends for the unwaivering love and support!

Good Heart News

Today was Matthew's follow up cardiology appointment.  All is well with Matthew's heart.  It is now normal size.  There is no flow through the PDA, so the coil did its job well.  The ASD has all but closed on its own.  The left ventricle is still a little thick, but hasn't gotten any thicker.  Straight from our cardiologist's mouth-- "Matthew's heart looks great."  We'll follow back up with him in a year.  Very good news!

Up next this week...GI and Dr. T. 

Big Deal

I purposely didn't post an update on Matthew's tummy bug yesterday in hopes that it was on its way out and I didn't want to jinx it.  Matthew hasn't thrown up in 36 hours, but his tummy still isn't right.  His stomach is still taut.  He refuses to eat in the evenings.  He cries after he eats.  He cried for an hour last night as his tummy rumbled and he gagged time and time again. Thankfully he kept everything down. 

I've been thinking this may not be your run-of-the-mill stomach bug and questioning the next steps as I think we've tapped out our pediatrician on this particular issue.  I don't want to go to the ER at this point, as I don't think it is an emergency.  Then I realized that we have a GI appointment this week. It is just a routine follow up, but it is fantastic timing! I hope that Matthew is 100% by the appointment, but if not I'm hoping our GI will be the doctor to help. 

Even as we've spent the last week in stomach bug misery, Matthew still gave us reason to celebrate.  He started holding his own bottle!  This is a very big deal in our house.  This means he's using his hands more, his hand/eye coordination is improving, and he wanted to eat!  Yippee!!

Matthew holding his bottle for the first time

Helmet Countdown Wk 4

Helmet Countdown- 4 weeks down, 6 weeks to go

With Matthew's stomach bug the past 7 days, he's been out of the helmet this week much more than his allotted 1 hour a day.  Even with that, the helmet is still doing what we want by making his head more proportionally appropriate. 

We had to reschedule our Dr. T appointment to next week.  There we'll ask if we are on track to have it off and we'll ask about the spot in the back too.  The orthopedist had to adjust the helmet in that spot again at this week's appointment, so it is either getting bigger or they have underestimated its size (several times).

This week I've been annoyed with the helmet a bit more than before, just because Matthew's needed to be held more and the helmet is cumbersome and cold.  Hopefully Matthew will recover from this stomach bug soon!

Alyssa, Matthew & Jackson

Keeping On

After the rough night, I decided it would be prudent to at least go see the pediatrician again.  Matthew hadn't thrown up this morning and by the time we saw the doctor, Mattie was his old self, just smiling away at the doctor.  The pediatrician doesn't think it is an adhesion or anything sinister like that, and thinks that this stomach virus just needs to run its course.  And though he's lost a half pound this week, Matthew is not dehydrated.  We should keep on keeping on.

So, Mattie was fine in the doctor's office and then proceeded to come home and throw up 6 times within the hour.  6 times!  Then he took a quick nap and woke up happy as can be.  I just don't get it.  I guess we'll keep him on the meds and pump him full of pedialyte again.  It's never simple with Matthew.  Poor sweet baby!

Kidding Me!

Yesterday was good.  Matthew hadn't thrown up in 24 hours and was acting like himself (smiling, rolling around, grabbing his feet, etc).  I was a little on edge when I fed him, wondering if I would see it again.  But by the evening (when I posted), I felt pretty sure Matthew had beaten the bug. 

I was wrong. Not an hour after I posted, Matthew woke up and started throwing up.  After a few hours of throwing up (or sounding like he would at any moment), he went to sleep again.  Now I wonder what to do.  It has been 6 days.  There is a winter storm that will likely paralyze Houston coming in a few hours. Doctor, ER, or keep on keeping on?  Ugh...I just want him to be well! Poor sweet baby Matthew!

Yippee!

Though Matthew ate less than normal, he kept it all in and down all day.  Yippee!!  We are so very thankful and enjoyed every moment with our sweet baby Matthew today!  We are hoping this is the first day of a good stretch of health for our household.  Thank you for the prayers and well-wishes for our sweet baby Matthew!

Enough Already

I'm so done with the vomit, the on edge feeling every time Matthew makes a sound, the worry, the outfit changes, and the vomit laundry!  I swear Matthew knows when I post that I think he's getting better, as he proceeds to throw up minutes later.  4 days of this stomach bug is more than enough!  I pray day #5 is the magic "all is better" day!  Please, oh please!

Reversed Course

After throwing up only once this morning and then taking a 3 hour nap, I'm hopeful Matthew is on the mend.  His stomach bug seems to have reversed course (as its no longer coming up but it is still coming out).  Matthew seems a bit better.  He's a little more active, he's been making non-whiny noises, he stuck his tongue out for a few minutes, and he even cracked a smile at me once.  He's not quite himself yet, but he seems to be on his way.  Hopefully it is just a short matter of time!

I'll be very happy if we stay out the ER with this bug.  We have to balance not wanting to be alarmist with not wanting to ignore red flags. We always want to do the right thing for Matthew, and we hope this time the right thing was staying home and staying away from all the bugs that congregate at the hospital.   

Holding Steady

It was nice to have an hours reprieve from sick baby last night, but he's back. Poor sweet baby Matthew.  I'm not as worried now as Matthew's swelling seems to be gone and he's taking a bottle again.  He slept through the night for the first time in 4 days and though he's not smiling nor very active, he seems better than he was 24 hours ago.  So, we'll continue to wait it out and keep a close eye on him. Thank you for the prayers and well wishes for sweet baby Matthew.