March Madness = Survive and Advance

We've made it to March!!!  For college basketball fans, like the Christmas song says..."It's the most, wonderful time of the year!!  And just like the saying goes during tournament time, it's all about "Survive and Advance."  That is the mode we have been in a lot since our first trip out to Philadelphia in August, but we're now feeling like life may REALLY be getting back to what normal will be.  The Hope Basketball season is, unfortunately, done as of last weekend with a loss in the second round of the NCAA tournament to Augustana College in Rock Island, Illinois.  It was our test trip (although after our experiences this past 6 months, Shawna and I aren't/weren't too worried about our families ability to travel) with Kierstyn for our spring break trip to Florida coming up.  Well, sort of, as Peyton was able to ride the "Hope Bus" with the "Hope Boys" and spend the first night at the hotel with the team before Shawna and Janet came out with Myles and Kierstyn.

It just so happened that the John Deere Pavilion was literally across the street from the hotel.....couldn't have worked out better....talk about a kid in his glory - John Deere, hotel with a pool, getting attention from the Hope players.....
It has been over a month since I've last blogged so I'll get down to the nitty gritty even though lots has happened since then.  Our Sweet KJ is filling out and growing very well.  She sleeps like a champ at night (knock on wood) and is starting to become more and more content NOT being in Shawna's arms.  She is/was quite the Momma's girl but for good reason.  For all that they've gone through together they've got quite the bond.  Also, Shawna has been our medical expert with setting up and going to the countless appointments with a whole array of doctors and specialists.  If you want the lamens terms explanation of things, you can ask either of us, but if you want more than the WebMD version, ask her.  She's been at the front and center and is the expert.
Kierstyn has continued to develop and things have gone as smoothly as we could have hoped for.  Once out of her casts, she was put into a harness as ultrasounds showed she had hip dysplasia.http://patient.info/health/developmental-dysplasia-of-the-hip-leaflet .  This isn't uncommon among even "normal" babies.  Here is the doctors terms....

If you can read that, then you'll understand why I can't explain any of the deep medical stuff (the image is of her diagnosis).
We continue to feel blessed in our transition back to reality.  Still this week, I've had a handful of people ask how our family is doing.  It takes a few more minutes to get out the door and would have with a third child no matter what (although I'm glad no one has witnessed me trying to navigate Kierstyn's new shoes that are connected by a bar!!!).  So, we continue to trek on.  Two colds and maybe the harness probably contributed to Kierstyn's small bits of fussiness (or her just being a typical baby) but now that those factors have passed, we look to the future and stay on our toes as we know there will be other challenges that will present themselves but only small bumps compared to many other things that other people have to deal with on a daily basis.
Thanks, again, to all of your thoughts, prayers, meals, emails, texts, etc.  Not sure if we can ever say this enough and thank you all enough.

CHOOSING JOY

-Jeff

Busy, Busy, Busy = the New Norm!!

That has been the case the past month.  Busy, busy, busy....although better that than the opposite.  The boys have now TRULY been detoxed back to life in Zeeland with time and Jen's Gems Daycare and watching LOTS of basketball.  They're getting to the age that they get to go along with Dad on recruiting trips (they know with me, still as a carry-over from all of our time/travels together this fall that they can sucker me right in to about any candy...usually the purple bagged Skittles or a McDonald's milkshake) on Tuesday and Friday nights or even to or home from away Hope games, although the result of the trip home from Olivet College can be seen below....two tired boys!!

We were able to celebrate the Myle's man turning 3 earlier this month.  Whoa, where is the pause button?  It seems like just yesterday that we were waiting for him to take his first steps (he was pretty content just crawling around and allowing everybody else to do most of the work for him....finally at the 18 month mark he decided it was time).  He requested a Southwest Airplane cake (sorry Shawna, another result of our many travels this fall...yeah, big boy problems when they started getting upset that we weren't flying on a Southwest plane...the boys love the colorful planes...and were flying a plane white United or American plane...see what I mean about detox) that Shawna slaved over and successfully created.

But the real star of the show, Kierstyn Joy, has had quite a busy, and successful few weeks.  Shawna and her are getting to be besties with many of the people at the Helen DeVos Children's Hospital in Grand Rapids.  They have many weekly appointments that will continue for quite some time and start to spread out as she gets older but I think they're quickly becoming VIP's.  KJ's castings to correct her clubbed feet have gone extremely well and her feet corrected more quickly than expected so the casting people decided to go ahead with a tenotomy a few weeks early and completed the procedure yesterday (read the link for more information on that).  The pics below show some of the process of cutting off the casts, the actually casting stages, and KJ's "corrected" feet.  And, holy crap, as I'm typing this at 6:00am, I'm just realizing she NEVER got up last night....I'm knocking on wood not to jinx that....model child.  She must be rewarding Shawna for sacrificing so much for her and giving Mom her first full night of sleep since November 30!!

The casts she is now in will be on for 3 weeks as the tendons in her legs heal and heels drop.  From there, we get to move on to some braces with little shoes on them (the most expensive shoe's I've ever seen!!!...Forrest Gump, we'll be to your boy braces soon!!! but I don't think we'll be running across the country..."Life is like a box of chocolates..." so true).  Below, you'll see a pic of her scar from the fetal surgery....the docs think it looks great and has healed nicely!!!  Battle wound!!!

Many other appointments with neurosurgeons, bladder specialists, physical therapy (I think I need that too as my body is starting to tell me that 32 years old IS in fact old), etc. have occurred with great results and will continue.  

We're still enjoying being back at home all as a family and getting back to life as normal with school, work, daycare, church, etc.

Once again, it's amazing what goes on around us in the world of medicine that we never knew about or had a sensitivity for.  As we've made our journey we've come to be amazed at what procedures are done on a daily basis to save lives or make lives better for us survivors.  We've even had a few people close to us have some very serious medical issues, one of which needed a fetal intervention surgery for their unborn baby that we could hopefully give some calming advice for and encouragement/confidence about going ahead with some very serious medical procedures.  Thanks for all of your thoughts/prayers/texts/cards/gifts/etc.  People are good!!  McMahon's, KJ will be wearing the Northwestern cheerleading outfit the day it fits!!!  Awesome!!

Go Broncos...sorry Karsten.

CHOOSING JOY

-Jeff

Back in the Groove!!!

Wow!  The 1 month anniversary of coming home as a family from Philadelphia was today.  So much has happened since then and our "Detox December" is over (Shawna and I have joked that we'd have a Detox December to get Myles and Peyton back into "normal" living as they'd become quite accustomed to being spoiled over the previous 3 months from grandparents, aunts/uncles, friends, etc.....and, oops, Daddio on occasion....what, they weren't supposed to get chips and cheese and ice cream in the bath tub every night?).  The month of December may not have been the ideal month to come home to and try to retain a sense and routine of normalcy with all of the holiday activities but beggars can't be choosers and we were happy to be home.  The holiday's did, though, provide us with some opportunities to see lots of family and friends, all of who(m) (help me English colleagues) gave us support throughout the fall.  The boys were also able to spend lots of time with friends (see New Year's Eve pic below...I think we may have found a good babysitter in the future,...check out Avery Towne with Kierstyn on the far left) and cousins as well.

We were a little concerned that the newness of Kierstyn may wear off after a few days or week for the boys and they'd get a bit sick of her but nothing close to that has happened (knocking on the wooden kitchen table right now).  They still embrace her and love to give her smooches on her head.  They're even nice enough to move her rock 'n play out of the way (when she's in it) when they have their indoor soccer games in the living room.  They love cuddling with her and us when we're holding her, too!

Shoot, Myles thinks he's found a new place to lounge and watch tv!  Little Man's Lazy Boy!!

We're just waiting for the time he climbs in when KJ is in it herself!  She's going to (have) be one tough cookie (hopefully she takes after her mom...or Aunt B., who took quite a bit of hassle, grief, bugging, etc., from me....I'm sure if Bethany had one of those rest things, I'd have been in it all the time if I knew she liked it and me in it would upset her!!).  Really, the only time I've seen either of the boys upset with her was captured perfectly in the pic below when Peyton experienced his first baby spit up....his face is priceless.

We've tried not to let having a 3rd slow us down.  We took advantage for the first time this winter of having our best friends, the Stein's, living right next to the sledding hill at Zeeland Christian by bundling KJ up for her first sledding experience (no, we didn't take her down the hill as we thought her having two casts already on her legs didn't need company with cast on any broken arms of hers or her Dad's...just picture Christmas Vacation and Clark Griswold flying down the hill on his metal saucer...that's what I was going for!!).

Speaking of her casts (for correcting her bi-lateral clubbed feet....see pic above), Shawna has started taking her to an orthopedic specialist in Grand Rapids once a week to get new casts put on and slowly correct her clubbed feet.  She's on her 3rd casting as of today.  It can be compared to someone having their braces on their teeth tightened every few weeks/months to correct an issue.  Each week the casts are tweeked to slowly straighten out her feet and keep her knees bent and kept in the correct position.  We're not exactly sure how long this will go for but have been given an estimate of about 8 weeks before the doctors will re-assess and go from there.  She has been gaining weight very well (just ask Shawna how much she likes to nurse!!) and is up to about 7lbs. 12 oz...chug, chug, chug!!!  All appointments with neurosurgeons in regards to her ventricles and issues with hydrocephalus have been positive (now, I know positive in medical terms often means you have "something" as Michael Scott presumed when Kevin Malone was waiting on cancer results on the the tv show "The Office" but I am using positive as meaning fortunate and good that it looks like, for now, she is not having any issues that would be cause for alarm or means for needing shunts, although we can never say never).  Lamens terms....all is and has been good, medically.  Pretty much all of her appointments are done at Helen DeVos Children's Hospital in GR and the people there have been great.  Shawna has done her due diligence to researching who the best are in each of the areas that we'll be needing to meet with specialists from on a regular basis and has felt very good about our care so far.
Kierstyn has been a very easy baby so far (those are my words...let me translate in Shawnish: "Kierstyn has been up quite a bit to nurse at night, although nothing out of the ordinary.  But that, compounded with my willingness to allow my husband to go to Florida with the Hope team for almost a week, numerous doctors visits, and trying to keep a house with three smelly and messy boys in line, has not been, has made for a few difficult days").  BTW, great article that truly articulates the life of a coaches wife and the sacrifices they make to allow us to do what we love to do:
http://coachkyleelmendorf.com/the-coachs-wife/
My only complaint with her is that Northwestern is 0-1 since her arrival after getting throttled on New Years Day by Tennessee, even though she was a sport and dawned her purple outfit for the game....which she slept through most of (as she is very good at doing most of the day, yet for some reason LOVES to stay awake from 9pm-12/1am...sound familiar to anyone?).

Now that the holidays are over and school has started back up, we're truly looking forward to getting back in a groove.  We're still receiving tremendous support from friends, family, community members, our church, work, etc.  We have plenty to be thankful for and keep on (trying to, at least)....

CHOOSING JOY

-Jeff

Home at last...Home at last...Thank God Almighty, we're home at last!!

I had to change the words just a bit from the final words of the great Dr. Martin Luther King Jr.'s I have a dream speech, but it's true...we're home!!

One of Shawna's favorite times of year is the Christmas season and getting the family out and about, enjoying all of the great, family, offerings that the season presents.  Getting home by the holiday's was always something we felt would happen but we were never sure.  So, one of our first activities as a family of 5 was to get out and enjoy the horse/sleigh rides and reindeer downtown Zeeland.

But let me back up.  Our last update had us hanging out in the NICU at CHOP and waiting to finish our checklist for discharge from the hospital.  Kierstyn was doing very well and by Friday night, of the birth, we thought there may be a chance that we'd be discharged on the following day.  Well, that night, KJ's temperature dropped just a touch (enough for some small concern but VERY small concern) which had a few of the doctors wanting us to stay for "a little longer."  Well, the doc that told us that Saturday morning told us that and then jetted away, leaving us (and our now frustrated nurses, as they'd seen KJ for a few days and saw that she was doing great) with a very blurry picture of when we'd be able to come home.  We requested to see that doctor again so we could be given a ballpark figure of when we'd be discharged so that we could figure things out for travel and me getting home for work.  Our NICU nurse (we had many awesome ladies, but one in particular, Katie) really went to bat for us and pulled some strings with a different doctor who was also phenomenal in taking into consideration our distance from home, to get the process going.  Unfortunately, by mid afternoon we still had not been communicated with on discharge.  So, I went back tot he Ronald McDonald House to check out and pack up.  I needed to get back home to work on Monday and Shawna was feeling good enough hanging in Philly a few more days (what's a few more after 101) and possibly flying home or me heading back out to pick them up.  

Frustrated with not knowing a few more answers, I jumped in the car at about 3 and aimed it west on my way home to pick up the boys at John and Janet's and get home by Sunday.  Fortunately, we (Hope) was playing at 3 so I could listen to our game on the radio while I started my journey home.  I was celebrating Ben Gardner's layup at the buzzer of the first half when my phone rang and Shawna's name popped up on my screen (I was now about an hour into the trip home).  "Can you turn the van around?  How far are you?"  This was with a bunch of laughing in the background from our nurse and doctor.  It was determined that there was a very good chance we'd be shipped home the next day so I needed to turn around and head back to CHOP!!!  All good with me if it meant we be on the road home, for good, the next day (personally, I think it was our insurance company wanting to get us off the books and they told CHOP to kick us out!!).  So, one more night in the NICU.  Sunday turned into a long day before discharge as lots of paperwork needed to be done and on a weekend, CHOP is a bit less staffed than on a weekday.  We spend the morning hanging out and waiting (we'd become pretty good at that).

We were finally released around 1 in the afternoon and booked it home, arriving around 2am Monday morning.  KJ was a rockstar traveler....and I say that not because she "sang" and made noise like one, but that we only stopped 3 times and she slept for 99% of the time we were on the road.  The other rockstar was the star of this whole show, Shawna.  Maybe I shouldn't be typing this as it may get her in trouble, but she even drove for about 3 hours!!  

Our arrival so late/early meant we couldn't wake the boys to see their new sister but it sure made it easy to get them out of bed in the morning (many of you parents know the battles with kids in the morning, waking them up before they want to get up) when they knew they'd be able to see KJ.

They were PUMPED....to say the least.  We didn't know how long the excitement of having a new sister would stick around and keep them on their best behavior, but still, into our second week at home, the boys have shown us that KJ is going to be blessed with two great, caring, big brothers.

The much anticipated arrival back home and adjustments back to "life as normal" - whatever normal is - has been an interesting one and at times overwhelming.  We arrived to a house that was decorated beautifully with Christmas cheer and numerous reminders of CHOOSING JOY.  Updates to our house had been made, cleaning had (once again) been taken care of, the fridge and cupboards and been stocked (but the roof still hadn't been redone....c'mon people!!).  We were once again, blown away, by the selfless acts by many people to make our lives and transition home, easier.  The prayers, calls, texts, gifts, cards, etc., keep pouring in to help support us.  We've been left, time and time again, speechless at the incredible people that we are so blessed to have in our lives.

We come home to our new normal.  With KJ, it will be years of lots of appointments with many different specialists to track her and help to make her life as "normal" as possible.  It started this week with a visit with our family doctor and a checkup with neurology in GR.  Just to preface the medical update, a lot of her future, medically, we won't know about until she keeps getting older and developing (i.e. we won't know the severity of any ambulatory issues until she's at the age when walking would start to occur).  The neuro-doc was encouraged by her development, already, as she weighed in at 5lbs. 11oz., above her birth weight of 5.3!!!  The areas that may be cause for concern and possible shunting in her brain checked out and looked good.  These will be closely monitored for a while to make sure nothing screwy happens, which is always a possibility.  He commented that her scar from the surgery also looks to be in great shape and healing well!!  So far so good!!  We'll be seeing bladder specialists and orthopedics in the next week and are also hoping for good reports from them.  

For those of you that know Shawna, having a 3rd child was not going to slow her down.  Life does seem to be back to normal as I've been able to get back to work, out recruiting (with the boys a little) for Hope, Shawna to the Critter barn with all the kids today (shoot, I got a text picture of them at the movie "The Good Dinosaur" last week....KJ was 9 days old!!!, although it being an empty theatre at 11am Shawna said it was great as the boys could be loud and she could breast feed without any worries!!).

So, long story long, we're home and happy to be here.  Seeing friends and family in the community, at work, at church, basketball games, etc., has been awesome and we can't stress how grateful we are for this.  This is a thank you to you!!  

CHOOSING JOY (as a family from Zeeland...but honestly, missing Philly...a little)

-Jeff

Tik-toc-tik-toc-tik-toc

So, before I get going here, sorry Lions fans.  Oh my.
Next, if you can't look at a sweet little face like this, stop reading, as you'll see plenty of it through this blog.  That's my girl!!

We're even catching nurses from other parts of the NICU popping over just to peek at our little blessing!  Good thing she looks like her mom!!

So, all along, I've tried to tell myself (and Shawna) that if we have a girl I won't give her the "princess treatment" and I've already put my foot down (in my head) to not allow myself to do that.  For example:

-her first car will NOT be a lamborguini (sorry on the spelling)...just a corvette.

-I will NOT pay for a destination wedding in Fiji or any other foreign, exotic island...just Hawaii.

-I will NOT buy 4-6 American Girl dolls for her...only 3.

-I will NOT take her on shopping sprees to the Michigan City Outlets...just the Tanger's in Wayland.

See...I can hold firm and give her equal treatment.  No problem.

Sorry Myles and Peyton, but lil sis may get different treatment than you do....not better, just different, and the sooner you can accept that, the better life will be for you.  Chad and I never fully bought into that and that is why we've suffered for so many years....Kurt, you too?

Speaking of the boys, they've already been awesome as they react to their new baby sister via facetime at both sets of grandparents houses.  They ask to see Baby Kierstyn right away and give some really funny, big brotherly reactions to how "cute" she is and giggle at her.  They even went shopping today with Grandma Janet and picked out a purple (GO CATS...yeah boys...by the way, Northwestern football is 10-2...I think that is a better record than a team over on the east side of the state) outfit and a few toys for Kierstyn.  They're going to be great big bros.  They've also been able to have some fun with the grandparents for (hopefully, well in terms of it being due to us being in Philly) the last time.

On Grandma Sue's 60th birthday, Tuesday, they spent some time at the Old People's Dormitory of Holland, officially known as The Warm Friend, with Great Grandma Dirkse watching the trains that are set up.  They showed us their new Bubble Guppies (???) or Aqua somethings they got at Meijer today during their soccer game at Papa John and Grandma Janet's house...I think they're surviving just fine.  Here comes Detox December.  

Well, back to some details with Kierstyn and Shawna.  Shawna was in some serious pain the day after surgery as initial meds and pain killers wore off and the cramping from breast feeding set in....not to mention the second major surgery on her abs in less than 3 months.  She made it through that day with flying colors and the "You can either throw in the towel or use it to wipe the sweat off of your face" speech from me...just kidding.  One of her/our saving graces was one of the fabulous nurses that we had (we had her after the initial surgery in August as well), Jill.  She is one of the most happy-go-lucky, funny, positive, caring, empathetic people we've experienced in our time in Philly.  She was always so open to how Shawna was feeling and bent over backwards to be creative with pain meds when Shawna was in some serious pain (I got the feeling she broke a few rules, too, to make sure Shawna was feeling okay).  We can't thank her enough.  Each day since has been better and Shawna was officially discharged today!!!  She spent most of the day crib-side with Kierstyn, although she was quite the popular girl today.  She had a hearing test....

look at those cords for her little headphones....no Beats by Dre, but the little babies version.

Then, she had an MRI that lasted a few hours to assess her brain/ventricles and her spine.  Results of that will help determine whether shunts are needed but we won't know on those until tomorrow (well, today, as I see it's now past midnight).  She also got her first pieces of equipment to help correct some ambulatory issues that she'll have.  The people in pediatrics made some custom bright orange and green splints for her legs....oh yeah.  We won't have her casted to correct her bi-lateral club feet until we get back to Michigan (see pics).

That will be quite a process but we'll make our way through the process...I've thought maybe her theme song should be "We Be Clubbin'" by Ice Cube!!  

She's been nursing from Shawna likes she's never ate before (well, she really hasn't) and that has been huge.  They've stopped doing ultrasounds on her bladder as she seems to be successfully and fully emptying her bladder on her own, not that she'll have control over it, which is a big deal for spina bifida babies!!  So, all in all, we're getting great reports on her progress on her way to discharge.  We've experienced some awesome nurses, as well, in the NICU.  The people, once again, continue to make our experience at CHOP the best that the circumstances could allow for.  

We've been asked many times when we'll be discharged and our best answer is..."yes."  So, we have no idea.  We still need to take an infant CPR course but will complete that today (Friday), Kierstyn has passed everything that we've received results for, and it looks like the path is getting shorter as we are encouraged to overhear some nurses talk about in the next few days while a few others have made comments about "by Christmas" or "in the next 5 weeks" to which I though Shawna was going to deck the doctor with an upper cut (that doc had NO idea this was a 37 week mom/baby...total assessing the situation, not the patient).  So, we don't know and are hoping for the best but preparing for the worst.  What we do know is it will be a bittersweet departure, whenever that does happen, as we've met so many unbelievable people throughout this journey, that do amazing things.  Just a quick example for those of you who have followed the blog, I mentioned a LONG time ago a couple from West Virginia who we were staying at the Holiday Inn in Chestnut Hill with who's daughter was going to be born with only 1 functioning lung and it was only functioning at 25% and was given a 5% chance of survival...guess who's in the NICU room/area right next to us...them, and when I asked the mother today how the daughter was doing (she was born a month or so ago) her eyes lit up and she gave me a two thumbs up....ARE YOU KIDDING ME...?  The medical personnel at CHOP do amazing things and we feel so blessed to be under their care.  Just to give you a quick pic of the NICU room that Kierstyn is in, and you can't see it all, as their are chairs/lazyboy style for us....

The amount of cords and monitor on or by Kierstyn are VERY precautionary, as they're just monitoring her lungs and heart but are really of little concern.  I think the nurses that have been assigned to her are on quite a bit of a break to what they're used to (although they do have to deal with Shawna and I).  I think Kierstyn may be the healthiest baby in the NICU as there are some pretty nasty situations that we're witnessing.  I'm amazed by the spunkiness, laughter, smiles, positive attitudes of the nurses in the NICU as they, day after day, deal with very dreary issues and life and death situations that don't always turn out well.  Unbelievable.  

We have had heavy hearts, ourselves, though, in the past few days for one of my players at Hope, Steve Wittenbach, as his mother lost her lengthy battle with cancer on Sunday.  The funeral for Deborah was today.  Please keep the Wittenbach's in your thoughts and prayers.  Amazingly, I am so fortunate to have the chance to be around unbelievable young men at Hope.  When I called Steve Sunday evening, his first question to me right away was asking how Shawna was doing.  Really, from a 22 year old kid who just lost his mother, he was showing concern for my wife.  Thanks, Witt.  You're the man.  Hang in there!!

Another shout out needs to go to the Penn Basketball coaching staff.  They've opened up their doors to me to come to any and all practices that I can as their gym is just a two minute walk from CHOP.  Each time I go, they all call me by name, ask how Shawna is doing, and have shown great support and compassion to me.  This is D1 basketball we're talking about.  They've got much bigger fish to fry than to go above and beyond to accommodate a small D111 school's assistant coach, but they have.  Go Quakers!!  I have the utmost respect for them and the type of program they run.  I'll never, in all of my coaching days in the future, forget their welcoming of me as they know what the real priorities are.  

Well, time for bed.  I'm hoping Shawna is catching some crib-side sleep at CHOP with Kierstyn as I made it back to the PRMH to get some laundry and school work done.  Still loving Philly but hoping to be home ASAP!  The clock is ticking....tik, toc, tik, toc.  

YOU KNOW....CHOOSING JOY

-Jeff