Saturday, May 4

Thursday, May 2

A 1st Birthday: From Dad's Perspective


I have an amazing hubby.  Here are his memories and thoughts on our sweet boy's first birthday.


One year ago today, Mary and I were in a very dark place; the darkest of our lives. We sat nervously in an OR prep room awaiting our date with destiny. We waited for the doctors to take Mary back and deliver a baby boy who most likely would not live, or best case scenario, would live but with a grim outlook of a short life with a very challenging disease (Osteogenesis Imperfecta, "OI").

 We had a waiting room of family, friends, a photographer, and even priests on standby for a very quick visit, then goodbye, to our beloved boy.

It was a very intense and long waiting period but finally it was our turn and Mary was taken back. 30 minutes later, with the best numbness I could muster, I made my way back to the OR with cameras in hand to document our brief meeting. As I sat with my my crying wife, camera in one hand and hers in the other, I tried my absolute best to be strong for her but I was an absolute wreck, constantly fighting back the urge to simultaneously puke and have a heart attack.

Finally came the big moment, and the sweetest, most amazing sound I had ever heard: my baby screamed, and screamed his fool head off. 

See, the doctors told us that Will most likely would have a chest too small to be "compatible with life". Mostly likely he would come out and not have the lung capacity/strength to take a breath, much less cry. He would probably come out purple and motionless and we would have to watch the doctors perform emergency resuscitation procedures, and if we were lucky have to make the gut wrenching decision of whether or not to put him on a breathing tube/machine. That's where we were 1 year ago today.

But, with powerful lungs, he screamed like a tired, hungry 3 month old. What followed was an equally intense 5 day stay in the NICU. We had a brief moment of joy when the doctors told us that they were backing off the OI diagnosis, but then were devastated hours later when the new diagnosis of an equally potentially fatal disease, Asphyxiating Thoracic Dystropy (Jeune's Syndrome), was suggested (later confirmed) as the culprit to Will's chest size.  

His stay in the NICU was mostly encouraging. His o2 saturations remained at around 100%, which is perfect, and all other vitals were normal. At this point his stay in the NICU became mostly for monitoring instead of treatment, but it was a gift from God as we learned from Will's NICU roommates of a very real world where not all baby deliveries are perfect pink and blue moments, but the colorless realities of life with challenges and no guarantees, but also of the beautiful people that care for those babies like they were their own children. Our lives will never be the same.

Today, one year later, Mary and Emme and I are in the brightest place of our lives. Our baby boy is healthy, happy, smiling, walking, talking, destroying and still, of course, screaming. He has never been hospitalized for anything that was not a direct result of Mommy and Daddy's over cautiousness. We remain vigilant, however, because while his condition is mild, it is still very real. But we remain committed to enjoying every possible second with our "miracle boy". 

Happy birthday, Will, my son. You rock my world in so many ways. You are so befitting of the name we gave you; "Will". The will to live, persevere, endure and defy the odds over and over again.
I love you and look forward to many more amazing years.


Will's First Birthday

Today is the day.  It is sweet, sweet Baby Will's first birthday.  I have so many emotions and thoughts in my head, but I can't seem to find the eloquent words I need to adequately express my feelings.

Except for one word...thankful.

Thankful for what was one year ago today; the scariest day of my life.  A day full of fear with a tiny bit of hope mixed in.  Prayers that the doctors were wrong.  Prayers that God would help us get through whatever was coming that day.  As I sat in that hospital bed waiting on Will to be pulled from my body, I didn't know how I would be able to go on if the unthinkable happened.  I prayed.  I held the prayer quilt our church had given us.

Photo by Julia Wade Photography

I was wheeled into the OR full of thoughts about how I would soon be meeting my son.  I thought there was a real possibility I would say hello and goodbye in quick succession.  The plan was for Will to be delivered via c-section and then he would be quickly whisked away so he could cling to life.  I laid on the bed in the OR being stitched up alone, doctors talking quietly, no one sure what to say to the crying, shaking mother.  I held onto my phone waiting on a text from my husband, Carlton, who had gone to be by Will's side.  Soon this picture came through.  The first picture of my precious boy.  He was alive.  Praise be to God.  I was thankful.

Photo by Julia Wade Photography

Today, again, I am thankful.  Thankful to God for giving us this miracle.  Thankful to everyone for all their prayers and support during this past year and during our crazy roller coaster ride of a pregnancy.

Photo by Julia Wade Photography

Thankful to my husband for being the most amazing Dad and partner through all of this (here are his thoughts on today).  Thankful to my sweet girl, Emme, for being the best big sister and most compassionate daughter.  Thankful for our friends and family that have been there as a shoulder to lean on in the tough days and for being Will's  biggest cheering section.  Just soooo thankful for everything our journey with Will has taught us.

It's hard to believe we're here at this milestone already.  I am beyond thrilled that Will is here....he's alive....he's doing so amazingly well....and God is good.  I am thankful.


Happy Birthday, sweet boy.  I love you more than words...truly.

I also can't celebrate Will's first birthday without thinking about two other very special families with sweet babies that are also getting ready to turn one this month.

Gorgeous Aubree will turn one tomorrow!!  She is in the PICU at CHOP (Children's Hospital of Philadelphia) recovering from her 2nd VEPTR surgery.  Would you be willing to head over to her Facebook page, like it, and show your support in honor of her first birthday?  Also, here's a link to donate to her family to help cover her medical expenses if you feel so inclined.  I can think of nothing better than to flood her family with thoughts, prayers and well wishes tomorrow.  Please join me in doing so.

Beautiful Aubree : Facebook Page

And sweet, sweet Madden will turn one on May 25.  He is also in the PICU at CHOP recovering from his 2nd VEPTR surgery.  This is a link to his Facebook page and also a link to donate to his family.

There would be no better way to show your love for Will and our family then for you to make a donation to Aubree and Madden's families.  They have been through so much and it would make our hearts happy to know people are supporting them in honor of our sweet boy.

Happy little Madman : Facebook Page

I feel so very blessed and pray every single day for all of the other kids out in the world with Jeune Syndrome.  I also think of all the little babies that are now angels and pray for those parents to find the peace and strength needed to go on.  It just isn't fair that these precious babies and their families have to go through so much.  Please join me in praying for them and for the doctors working to help save the lives of these beautiful, brave and strong children.

Hug your kids tighter today.  Each and every one of them are miracles and gifts from God.

PS - If you don't know the full story about Will, you can check out this video I made shortly after his birth.


Monday, March 11

Local Folks: Triangle Family Expo!

For all of my local readers, you should head on over to this website to check out a FREE family event coming up March 22 and 23 at Beaver Creek Commons in Apex.  It's called the Triangle Family Expo and it incorporates an awesome consignment sale with lots of other great family activities...and did I mention those activities were free?!?  Just click on the link below for more info and a schedule of events.


The whole thing is being held at the previous Borders bookstore location...  For those DIYers and home accessory loving folks like myself, it may be easier to find if I tell you it's super close to the TJ Maxx and Home Goods.  A consignment sale + free family activities + a nearby Home Goods?  Sign me up.  Hope to see you there!


For more info, click here.

Building A Bench Seat : Phase I

If you follow me on Facebook or Instagram, then you know that we've been working on building a bench seat for our kitchen.  This is one of those projects I have had in mind since we moved into this house nearly three years ago.  Our kitchen area is super, super open to the rest of the downstairs.  In fact, I would go so far as to say that our entire downstairs is one big open room that is separated only by a central staircase / pantry / bathroom (tornado shelter).  Because the area is so open and the space is limited, I am always looking for a way to maximize space and storage.  We have also done away with our formal dining room and instead made it a bit more of a play area for the kiddos.  This means, we're always sitting down to eat in an area off our kitchen that is 9 feet by 9 feet.  Yep, pretty small space.  It has windows on two sides and a knee wall that separates the space from our living room.  See how small the space looks?  Especially with all those spindly chair backs sticking up everywhere?  Oh and yes I do need to do a post about those curtains.  Soon-ish....

Valentine's Day Lunch  :)

The other problem with the space is that whenever we had people over and we stuck the leaf in the table for extra seating whoever sat around towards the back windows had trouble getting back out.  I've been looking at tons of inspiration pics online, but this one really got me back into gear and thinking about how we were going to do this project.

Source: Direct link to Casa De Lewis blog 

I think this image spoke to me because of how simple the bench looks, plus the colors, lighting and overall design appeal to me.  Heck, the yellow color and the light fixture is pretty much identical to my space.  Sooo with my inspiration pic and desire at 100%, I started googling around to find a set of instructions to build my banquette / built-in bench + storage.  That's right, we were going to kick it up a notch by adding a hinged top so we can jam pack it full of stuff we don't have room to store (paper towels, toilet paper, whatev).  I also really want the chairs in the pic above...like really, really want them, but our World Market is all out.  Oh well, if it's meant to be...it will be...right!??!

One afternoon during naps, I sat down and started sketching out my plans based on some various DIY banquette building projects I found.  Honestly, there just wasn't a thorough set of instructions out there and I realized after a couple of weeks in search of the holy grail of instructions, it just wasn't going to happen.  So, I ROUGHLY sketched out our 9 foot by 9 foot area and began brainstorming about how big I wanted our bench to be.  This whole project really is like a puzzle.  Once you have the materials you need, you really can alter it as you go and end up with something pretty darn awesome.  You just have to get up the nerve to start building...  Gulp.

I ended up deciding that I wanted the part of our bench that goes up against the half-wall near the living room to be 96 inches long.  Part of this was because I didn't want it to go all the way to the end of the half-wall and the other part was that it was the length of a 2x4 and that was good enough for me. :)  Lazy much??  Nah, I call it efficient!

I also decided that I wanted this bench to have an overall L-shape and that I wanted it to go half way across the far back wall for another 5 feet.  I also took our table size into consideration.  When I'm telling you I literally sat down with a pencil and paper and figured it out, that's what I did...  And if you're thinking of doing something similar, that's what you should do too.  Honestly, this was one of the more challenging parts.  Just really thinking about it and making sure you're comfortable with the size...that it works for your space, with your table, with your height, etc.  

MEASUREMENTS:  Here's a quick peek at some of the more important measurements and why I decided on what I did:

  • Seat height (the measurement from the floor to the top of the bench):  I chose to do 17 inches.  Everything I read said to sit in a chair you're comfortable in and then measure it.  Our existing kitchen chair seats are 18 inches from the floor.  I didn't want something quite that high for the bench though because I may decide to add a bottom cushion to the bench later on.  I wanted to leave some wiggle room for the increase in overall height the cushion could add.  You also want to consider how much room your thighs are going to have between the table and the bench.  You don't want things getting pinched or making it hard to slide on and off of the bench.  The bottom edge of my table is 27 inches off the floor and with a bench height of 17 inches it leaves ten inches of wiggle room which is slightly more than what we have at our standard dining room table and chairs.  Good enough for me!
  • Seat depth (the measurement from the front edge of the bench to the wall):  I chose to do 20 inches.  This was a bit deeper than a lot of the benches I found online, but I knew that I wanted something that would comfortably accommodate my tall family and give us the ability to lean back a little and still have our upper legs supported.  I wouldn't go much narrower than this though...regardless of height.  I think it is also a good depth for little kids so they can sit on their knees and have plenty of room for their legs behind them.  
  • My **NEW** table (more on this project later!): 38 inches wide by 76 inches long x 28.5 inches tall.  Actually this table is also what really kicked off this project.  I found it on an online message board for $25 and it's actually solid hardwood.  Shut up.  It's amazing.  I love it.  I caress it.  I need to finish painting it.  Story of my life.  More pics soon.

Oh and it never hurts to take your overall measurements and actually lay them out on your floor in painters tape so you can see exactly what you're thinking in terms of size.  I didn't do this because I had literally been planning this thing out for years in my head, but I would really recommend this if you just aren't 100% on how long you want your bench to be.

Once I had the big things measured, I made my supply list.  I'll post about that in the next update though.  This one is getting far too wordy and this overall project is one of the biggest we have undertaken.  I will definitely be splitting this up!  Stay tuned!

Picture taken right before my OB walked out of the doors.
Awkward much?  Yep.  He totally recognized me.  I'm not sure if
I'm flattered by that or not.  

Saturday, February 2

Happy 9 Month Birthday, Baby Will!

Seriously?!  How could it be that Will is already 9 months old?  Time is flying by...

He's crawling now and pulling up to standing.  He says Mama and Dada and thinks his sister is super funny.  He loves solid foods and will try to eat anything and everything you put in front of him.

Such a sweet boy.  Happy 9 months, Baby Will!  We love you to the moon and back.





Sunday, January 20

Week 2: Epiphany 52

A perfectly imperfect moment.




















The touch of a hand, the smile on a face, peace in my heart.

Saturday, January 19

CHOP: Day 4

Yesterday was our fourth and final day of official appointments for this visit. Unfortunately, our final visits ended up being inpatient since Will spiked a fever after his MRI and CT scans. I will just skip right to the big takeaway though!

Will has not been recommended for the VEPTR surgery at this time. We are very encouraged by this and it is such a huge testament to the power of prayer. Will does have restricted function in his lungs because of his small chest but he is able to "compensate" for this right now. The concern going forward as he continues to grow is that his chest won't be able to keep up and his oxygen needs will be greater than what his lungs are able to provide. BUT, he's doing okay now and we get to take him home (today!!!) and get back to life as normal until we come back for our next set of appointments in late July.

We will repeat some of the tests in late July and see how his lung function has changed. If it's the same or better relative to his size, we will likely get another pass on the surgery. If his function is going down, then surgery will be imminent if we agree to it.

Soooooo, today we are thankful. Praise be to God for continuing to allow Will to do so well. We remain prayerful over the coming months that Will's chest will grow and that his lung function improves.

And with that, we are out of here!!! Thank you for all of your support and encouragement. We truly couldn't do this and remain sane if it weren't for each and every one of you.

Thursday, January 17

CHOP: Day 3

Will had his MRI and CT Scans today under anesthesia. We were nervous about this for many reasons but particularly more so because he has a cold and he had some rapid breathing and vomiting late yesterday after his PFT.

I'm pretty sure the anesthesiologist thought we were crazy for being so concerned. He called the pulmonologist and he also sounded like he thought we were nutty because Will was only "acutely" ill. Soooo, I said yes to the tests while Carlton kind of felt iffy about it. He ended up agreeing and we kissed our boy goodbye.

Will did great during the test and was extubated and breathing on his own like a champ. We were admitted to the hospital as an extra precaution because of all out concerns. Late this afternoon, there was talk of discharging us because Will was doing so well. THEN, I noticed he felt warm. We kind of shrugged it off for a bit and then I felt more urgent about it. When we took his temp, it was 101.6. Enough to warrant Tylenol and some tears from me.

I'm not worried about a fever. I'm worried about what's causing the fever. I'm worried this is the tip of the iceberg. The thing that keeps us here. The thing that makes the VEPTR something we have to do now. I'm scared. I'm stinky. I need deodorant. You know, big things. Life changing things.

I'm praying. Praying that it's just a weird, random fever. A poorly timed fever designed to remind me just how special our boy is. He's sleeping now. The Tylenol is working. I hear him stir. I hear the gentle, rhythmic breathing I craved to hear just a few months ago when I was pregnant with him. I am reminded that God'a hand is always at work. Providing hope in the moments when you feel so alone. So scared. God is good and I know he'll help guide us through this bump in the road.

Tonight I pray for Will. I pray for his fever to go down and for whatever is bothering him to get better. I pray for his chest to grow. I also pray for Madden, sleeping just one floor down. I pray for Aubree, just sleeping a few doors down. I pray for Lauren, sleeping in Texas. I pray for all of us parents to feel the hope, strength and peace that only God can give us.

Here's hoping for a fever free and good day tomorrow.

Wednesday, January 16

CHOP: Day 2 (Grow, Baby, Grow!)

The mission for today was doing Will's pulmonary function test (PFT).  We were a bit nervous as to whether this would actually happen today because, as luck would have it, Will caught a cold.  Yep, that's right.  He caught a cold.  We have been running around here like crazy people trying to keep ourselves cleaned and sanitized, but it didn't work.  He isn't super sick, just a little nasal congestion, but it was enough to have us stressed.

We went in bright and early this morning to see Dr. Mayer, the Director of the Pulmonary Function Lab and attending pulmonologist.  After meeting with him for about 30 minutes and discussing a few questions and reviewing Will's history, he took a quick peek at him and said he thought he was healthy enough to proceed with the PFT.  Thankfully, we had a bit of a heads up from other families about what was going to happen during the PFT.

During the test, they put a mask over Will's nose and mouth.  They used this to monitor all of the air flow.  The funny part is that they use medical grade silly putty to seal around the mask.  That was the tiny bit of humor we could find in this procedure...  It was pretty tough seeing Will sedated though.  They let me administer the medicine to him and then I was able to hold him until he fell asleep and then I also placed him into the 'bed'.  It was nice to be able to be so involved.  It made it all a little less scary. There was also a vest around Will they used to press air back out of his lungs after they had been fully inflated.  They called this giving him a hug and it was one of the more nervous parts of the test for me because his body seemed to kind of jolt when they did it.

Will taking a good nap during the test thanks
to some chloral hydrate.

There's also a sliding box (technically called a body plethysmograph) they use to completely enclose the child during one portion of the evaluation.  

Will in the final stages of the evaluation.

As the test goes along, a computer charts everything and once it's all done Dr. Mayer just sat in the room and reviewed all the data while we woke Will up.  It was pretty amazing to see how real time everything was.     

Dr. Mayer reviewing the results

So, here are the very basic results.  Will technically has restrictive pulmonary disease.  This isn't really a surprise since he has Jeune Syndrome.  This basically means that his lung expansion is restricted because his chest wall is rigid.  Unlike a normal rib cage that expands adequately during respiration, Will's chest doesn't move very much.  This means, he can't take a super deep breath, thus resulting in the need for him to take more breaths.  

The good news right now is that Will's total lung capacity is at 77%.  This is on the low end of normal. If you think about it on a bell curve, 100% would be perfectly average.  Some people, like crazy mountain climbers or divers, may have lung capacity greater than 100%.  Other people, like smokers or people with other diseases, may have capacities lower than 100%.  Anyway, the short version of all these test results is that Dr. Mayer doesn't think Will needs the VEPTR surgery immediately.  Today's PFT has given us an outstanding baseline.  We now have the data we'll need to use in the future to determine whether Will's lung capacities are improving, decreasing or staying the same.  

In the case of people with Jeune Syndrome, it is unlikely that their lung capacities will improve without surgical intervention.  HOWEVER, Dr. Mayer made it a point to note that Will has a mosaic form of Jeune.  As far as any of us know, there has been no other documented case of a mosaic form of Jeune.  SOOO, Will is a bit of an unknown.  Our plan with Dr. Mayer is to come back within some agreed timeframe, probably within 6-9 months, to do the PFT again.  If those numbers have stayed the same, we will probably keep watching Will.  If the numbers have gone down, he will probably heavily recommend doing the VEPTR right away.  

Soooooo.... we are kind of waiting.  We still have the MRI and CT Scans to do tomorrow.  Those will give us even more information about Will's lungs.  Then, we'll meet with Dr. Campbell again Friday morning to discuss all of the tests this week and probably get an initial recommendation from him on what he thinks we should do.  We're pretty confident right now that we'll come home, give it a few more months, then reevaluate.

If someone made me guess what was going to happen, I would guess that we'll end up doing the VEPTR surgery sometime within the next twelve months (Hubby's guess is that we won't).  Here's the thing, the surgery still scares me.  I am going to be praying, praying, praying that The Great Physician touches Will and helps his chest grow enough to continue supporting the increasing needs of his growing body.  The hard part is that Will is just kind of uncharted territory.  Nothing with this kid is ever by the book..he's full of surprises!  I pray this continues and that his chest grows, grows, grows!  If there's one prayer we covet right now, it's that.  We are praying for his chest to grow enough to support his body.

For now, Will sleeps!  He was thoroughly unimpressed this morning and doesn't have a clue why we're being so paranoid.  

Will sleeping after his PFT.

And to end on a ridiculous note, here's what I did while waiting on the test results.  Can you tell that I get a little wacky when stressed?  Who knew about medical grade silly putty?!?  I may have even slipped it in my bag on the way out.  Emme will be so thrilled.  :)

Silly (putty) mommy!