S Day #2

Yes, this blog may be just the fruition of having some extra time on my hands but thought that a quick update from earlier this afternoon as things can change very quickly with these types of situations....well, they haven't.  All is good in room #2 of the 6th floor wing that we're in. 
Shawna is feeling a little better with time.  She is being taken off, slowly, the magnesium that gives her the pukey feeling and will hopefully be able to eat some ice chips soon (gotta celebrate the small victories!!!).  She has been able to start to sleep a little but the nurses (who are great) are monitoring her very closely and come in about once an hour (can't wait to try to get some good sleep tonight on, what actually I think, may be an okay pull-out couch).  She's been a champ all day, not that I or any of us expected anything less.
But I thought you all would want an update on me, as I know I am the one you are all SO concerned about!!  I tried to do the right thing this morning and, hoping she would turn down the offer, told Shawna I would hold off on eating until she could to make this more of a joint experience and allow me to suffer at least a little of what she is having to physically go through but her reply was, "We don't need two grumpy people (she didn't use the word people...use your imagination) in this room!"  Whooo, a sigh of relief.
I thought that I'd be feeling rather guilty to a point having to sit here and watch her go through physical pain that I could do almost nothing about, that is why I offered to fast with her.  Little did I know, I would be suffering physically...the magnesium they give her basically makes her body a furnace so they turn the temperature in the room WAY down.  So here is the picture you can put in your head....I'm sitting here with gloves on, trying to type, two pair of sweatpants, two pair of socks, three layers on my upper body, icicles of snot coming out of my nose and peeing ice cubes every time I have to go to the bathroom!!!  I'm just about to walk to the Penn bookstore a few blocks away and buy a winter parka and hat. 
On that note, if anyone wants some Penn/Eagles/Flyers/76ers/Phillies gear, get your orders in. 
So, to de-thaw earlier this afternoon, I slipped out of the room for about 45 minutes while Shawna slept and took a jog around Penn's gorgeous campus which was bustling with students as I think it's the first week of classes.  It was bid different trudging through the 90 degree, thick heat, than sitting in our igloo, but it was great.  I had 3 eye opening experiences/observations:

1. As I started my run, I had to run around the massive medical complex that CHOP is a part of and quickly noticed the numerous hospital employees taking smoke breaks....isn't that sort of ironic/stupid/whatever.  People working in health care that see people on a daily basis that have life threatening issues yet they spend their free time, ultimately, picking up their lives pace to death.  Hmmmmmm.....

2.  One of the few reasons I actually had some excitement about being at CHOP was that I knew it was on Penn's campus and I knew, as would any college basketball fan with any passion, they played their home games at the Palestra, an old barn of a gym with tons of college basketball history.  Numerous legendary games between heated rivals from the Philadelphia area and greater northeast have been played there.  It's like the Holland Civic Center of the east coast.  So, on my jog, I ran up to the doors but unfortunately found them all locked.  Just as I was turning around to continue on my run, the first door I had tried opened up and a YOUNG man about my age asked if he could help me out.  I explained to him that I'm a college bball junkie and small college assistant coach and was hoping I'd get the chance to peek in the legendary Palestra while I was in Philly.  He asked what brought me to Philly and I explained our journey.  Turns out he was about my age and had just been promoted to, basically, running maintenance and that sort of stuff for the Palestra (he was very proud of the promotion) and had 3 year old that doctors had detected a heard defect on before it was born.  His wife and child were also operated on, prenatally, at CHOP so we quickly struck up a bond.  Brandon then took me on a personal tour of the facility and we were able to watch some of the Penn players working out with some of the coaches and walk through the hallways which have been turned into an unofficial museum of sorts of all the history of the building.  He was great...a weird trend of the people that are going out of their way for us in our time of difficulty.  I could tell he knew exactly what I've been going through and thought this was a way he could help and it did.  It was AWESOME!  Thanks, Brandon. 

3. As I entered back into CHOP I got in the elevator with an older lady and just as the door was closing a kid, couldn't have been more than 12, slid in carrying a car seat with an infant in it.  The older lady said to the boy, "Seems you've got your hands full."  His response was, "Oh, I take a cab here all the time.  It's no problem."  No parent in sight.  The boy was young enough I didn't know if he was at the children's hospital for him or for the infant but he was definitely the care taker, having to look after an infant on his own.  Another eye opening experience that made me count my blessings!!

A few people have requested our address out here.  We don't have one...yet.  We think we have some housing through the month of September (I'll explain later....another blessing out of nowhere!!!) but I'll be making trips back and forth as Shawna's mom, Janet and I share duties of being her support person.  So as the male support does that make me Mr. Jockstrap and as the female support person, her Mrs. Brassiere?  So, I'll be able to get stuff and get it back out here on my trips back and forth.

8791 Gordon St.
Zeeland, MI
49464

My fingers are tired from texting with people all day.  This is a good thing.  You all have been so supportive and reaching out to us on this pivotal day of our journey meant so much to all of us!

CHOOSING JOY

-Jeff

With all of my layers on I quickly ran down to the car, where it had to be at least 95 degrees,  to try to get out a few DVD's and snacks.....It was hard to CHOOSE JOY when I couldn't get into my car!!  That's okay because I knew I got to head back to the room to this beauty!!

S Day

So it is only 3 pm but it seems like an eternity ago that we woke up and made the drive to CHOP this morning.  Let me back track...I titled today's post S Day partially due to the history teacher in me and my interest in WWII and D Day.  The nurses and doctors will refer to tomorrow as day 1 so tomorrow will be S Day plus 1 as they referenced each day after D Day as D Day plus whatever the day it was.  So today was S Day (Surgery Day).
We had to be at CHOP by 5am so they could get blood work done and blood ready in the case of an emergency during surgery where they'd need to do a transfusion...nice calming thoughts before surgery!! 
I thought I'd format this post a bit differently with a sort of timeline:

12am - We turned the lights out in our hotel to TRY to get some sleep.
1am - I still couldn't sleep....not sure if it was due to nerves (yep, what a woose, the one that doesn't even need to have a serious surgery the next day is the nervous nelly!!), the AMP energy drink I had before my last shift of driving, or the nap I took while Shawna drove in the afternoon, keeping me from sleeping.  I was relieved, though, to be kept awake partially due to Shawna's snoring!!  I usually get really frustrated and give her a gentle nudge or smack with a pillow but this meant she was getting some sleep and not up stewing about with nerves!!  What a champ.
4am - We both woke up and made our way to the car.  Last week it took us usually around 25 minutes from the hotel to CHOP but due to the lack of traffic at 4am it only took us about 15 minutes and was smooth sailing....well, maybe smooth is the wrong word.  Because we could fly on the roads with no traffic keeping us going slow, we fully realized that New Jersey may be the only state in the union with worse roads than Michigan.  At least they have a reason....they have the second lowest gas tax in the nation just ahead of Alaska so their funding for their roads is about zero.  The gas prices are dirt cheap due to this so being as Dutch as I am, I didn't mind the potholes.  C'mon Gov. Snyder, we've got awful roads and high gas prices!!!
4:15am - We knew it was going to be a good day as a Cub's pitcher was just hours past his no-hitter and our EZPass worked on the toll before crossing the Ben Franklin Bridge (it failed us the day before on the Ohio Turnpike!!).  Good things come in 3's, right?  So we had a good feeling about the surgery.
5am - We got acquainted with our room and Shawna got her blood drawn.
6am - We were able to watch the local news on tv and the latest "Prep For the Pope" segment.  Seriously, he's not coming to Philly for another 27 days and they already report on it daily...it's quite the to-do and is not making the locals too thrilled about travel in the city as they plan to allow no vehicle transportation in the city center for the days he's here.  In an effort to try to calm the nerves and anger of the locals I believe it was the mayor or some high up who said something about Joseph and Mary traveling with out fear or anger to their birthing of Jesus....not quite the same, we felt, although we now feel that maybe our travels with our unborn child may have some connection.....nope, that's far fetched too!!
7am - Shawna received her epidural from the anest...whatever those guys are called.  This dude, Doctor Cohen looks sort of like an old mad scientist but I think is pretty cool. 
7:30am - Right on schedule, Shawna was wheeled out of the room to head in to the surgery room.
9am - Doctor Hauer, the Doc in charge of doing much of the neo-natal surgeries at CHOP came into the room to chat with me.  He waltzed in as if it was business as usual and briefed me that the babies back had been repaired and that all went well and that they were in the process of putting Shawna back together.  It would be like me teaching an everyday lesson about JFK being assassinated and then strolling into the lunch room and striking up a conversation about Trump making another controversial comment, yet his ratings keep rising.  I wanted to say, "Doc, this is unreal.  You just opened up my wife's stomach, uterus, fetus, etc., and operated surgery on my unborn child...Two lives were at risk and you can act like nothing big just happened."  Modern medicine!!!  I wanted to jump in his arms and give him a huge bear hug, but I let my better judgment take over and didn't.
9:15am - Karen, one of the nurses, who was in on the surgery and we've really enjoyed spending lots of time with (we're not sure, but we think she's kind of the mother hen in charge of all the nurses), came in to also update me that all had gone well.
9:30 - Dr. Adzick (the man, the myth, the legend....the more I talk to people around here, the more I realize how blessed we are to have him operate on Shawna and our baby....sorry, another analogy...If I told the med students at Penn - CHOP is on Penn's campus which is beautiful, by the way - that Dr. Adzick was in our hospital room this morning explaining to me in a one on one conversation how he operated on Shawna and our baby - which really meant nothing to me in terms of his stature - it would be like Michael Jordan walking down the street in his neighborhood to explain to the neighbor who is a computer engineer, nothing against computer engineers, and had not an ounce of athleticism or interest in athletics in his body, how he just spent an hour working with his kid on his jump shot) came in and chatted with me briefly that all had gone according to plan and was good from what he could tell.  Phew.  Prayers answered and I could relax.
9:45am - Shawna was wheeled back into the room.  As can be imagined, she was a bit groggy and in some pain but in good spirits and with the first words out of her mouth to me before I could even say anything to her, the great mother in her asked me, "How is the baby?"  It brought tears to my eyes.  No concern for her own self but only about her child.

Okay, sorry, that was a lot, and I've got more but I'll get another post out later this evening on some more updates. 

So, to wrap it up.  Baby and Mom are doing well.  Now we just pray that baby stays put as long as possible!!! 

I'll leave you with one of the best quotes I've heard in a while:

Jeff to Shawna: "So, how are you doing?"
Shawna's response: "Smile on my face, catheter in my crotch!"

CHOOSING JOY

-Jeff

Countdown T - 9.5 Hours

So, the countdown to surgery is on.  Shawna will be heading in to surgery at 7:30am EST tomorrow morning.  We are set to be at the hospital at 5am for some last blood work that needs to be done and the lab there usually has a turnaround of 1 hour but just to be safe, they wanted it done 2.5 hours before surgery.  We're going to try to sleep a little bit tonight, but butterflies/nerves/anxiousness may keep the sleep to a minimum.  Thankfully, we won't have a whole lot else to do in the next few days but hang out at CHOP and catch up on sleep so all will be good.
The trip back to Philly was smooth today, although it was by far our slowest one way trip of the three we've made.  The previous two we made in 11 hours or a touch less.  Today was 12 hours on the dot due to 6, yes 6, stops along the way.  One of the directions from the doctors/nurses was for Shawna to drink an excessive amount of fluids today which doesn't coincide well with trying to make good time while traveling by automobile.  We foresaw this as being a problem (although one of the stops was due to my bowels, not hers, needing an emergency stop....a problem I've been told is genetic, passed down from my Grandma Carlson) and packed some of our boys diapers to use if need (yes, it's been done on trips before in the Carlson vehicle).  We never did resort to using those, though. 
These 12 hours were a bit more enjoyable than the last few trips of 10-11 hours, as we had air conditioning.  The last trip was done with the windows down most of the journey as my cars AC didn't want to cooperate.  Thanks to Jeremy and Hannah Stein and the suggestion and purchase of a quick AC fix kit from AutoZone (they met me at 7:45 this morning to help me...excuse me...do it for me) we got the cold air kicking.  That, along with finishing the book on disc Up Country and starting The Broker, made the trip seem very short.
It was tough to leave the boys, again, this morning at Shawna's parents house but it gives us a great sense of calm knowing that we leave them with two great sets of grandparents who love and care for them deeply.  Shoot, we think our boys enjoy this more than being at home with us.  Last week when we were out here Shawna tried talking to the boys on the phone, but was basically blown off because they were too busy playing with their new found best friend, Lilly the kitten at Grandpa John and Grandma Janet's house!!  Why do I get the feeling that when this whole journey comes to an end in late November or early December, we may end up taking home a new pet with us?  We're looking forward to the boys coming out on Thursday with John and Janet (Shawna's parents) for a long weekend before John, Myles, Peyton, and I journey back to Zeeland on Labor Day (that will be the definition of organized chaos!!!).  It was great to get back for a few days to see friends and family and we can't thank everyone enough for all the support through so many different avenues.  This whole journey wouldn't be possible without the support system we fortunately have around us.  It is impossible to describe it.  People are good.
Moving onwards and upwards from Philly!!

CHOOSING JOY

-Jeff

CHOP - Day 2

We made it through another long day of meetings at CHOP that left us feeling very good about moving forward with our decision for the prenatal surgery.  One of our greatest concerns about the surgery was not the surgery itself but was having to spend so much time away from our rugrats at home.  It is still not an ideal situation as we'll get to see them periodically over the next few months but CHOP has a child life specialist who works with families and has all sorts of ideas and resources to keep parents connected with their children.
Second, a major concern of ours has been the possibility of having our baby need shunts in it's brain once born.  Shunts are great, as they are a life saving mechanism, but have many risks involved.  The team of surgeons and specialists today did not rule those out, but were very positive about the statistics that show that children who have the prenatal surgery have a much higher rate of not needing shunts.  They were very realistic with us about what they could tell about the possibility of impairments our child will and could have but also painted a much more positive picture about what they have seen in their patients who make it to at least 34 weeks of the pregnancy.  We're still being realistic but have hope that the impairments, due to the surgery, are far less extreme than they would be without the surgery being done prenatal.
Dr. Adzick, the chief of surgery of all of CHOP, is the head surgeon for the procedure.  He and another doctor "invented" the whole idea and procedure for prenatal surgeries on babies so we feel like our baby and Shawna are in excellent hands (as if Thomas Edison was coming over to work on a light bulb for you).  He/they are the best in the world and for them to give us a vote of confidence in our choice as they've looked at all of our variables eases our fears and nerves.  Their whole team has been extremely accommodating, friendly, and caring.  They also have a little swagger about them that they know they're the best and are confident in their trade and abilities.  Overall, we feel great about who will be taking care of us. 
Shawna and I decided that we should take advantage of the situation and were able to get out and about this evening to see a few sites (I was hoping maybe the Phillies/Mets game) so we made it to the Liberty Bell, Independence Hall, and The Tomb of the Unknown Soldier (for the Revolutionary War) before enjoying an unbelievable flatbread meal on Market St. next to a Ben Franklin look-a-like (got to love the people watching in big cities). 
So far so good in Philly.  Isn't their a tv series "Always Sunny In Philadelphia"?  We're finding that to be more and more true everyday. 
Thanks for all of the emails, calls, texts, gifts, etc.  It's made the beginning of this journey much less burdensome and has helped us to remember we still have a blessing entering our family come mid-November or later (hopefully later!!).  Spending two days at a children's hospital has reminded us that we're pretty lucky as we've witnessed many situations that are far worse than ours.  We think all parents should sit in the lobby just for a few minutes and I think they'd have those same thoughts.
We've had an outpouring of support and many of you have asked about making a meal.  If that is something that you've inquired about, my mom, Sue, has said to just contact her (carlsons@hope.edu).  Thanks again. 

CHOOSING JOY IN PHILADELPHIA

-Jeff

Finally...some dates

After a very full day of meetings and more medical exams (2.5 hour long ultra-sound....ugh), we finally have some more concrete information and at least a more clear path of what lies ahead in the coming days/weeks/months.
Fortunately, they didn't need to do another amnio and any blood tests, but the day was long.  We have made it back to our hotel, a quick hop, skip, and jump into New Jersey over the Delaware River (we cross a bit differently than George Washington did in his famous picture standing in the old wooden row boat!!) and it is 4pm after our first meeting at the CHOP at 7:30am.  Our day is scheduled to begin tomorrow at CHOP at 9am for another round of meetings to get things set for surgery and beyond.
Here is what we can tell you for sure:

1. We're going through with the prenatal surgery.  We think it will happen next Monday (Aug. 31).  They are going to try to have our (when I say "our" in terms of surgery, I obviously mean Shawna....what a tough cookie I married!!!) pre-op "stuff" done Thursday so that we can get home for the weekend to get things in place and see the boys.  Shawna will be in the hospital for 4-5 days after the surgery and then on VERY strict bed rest for a few weeks.  From there, she'll have weekly appointments at CHOP so it looks like we'll be making the greater Philadelphia area our home until mid-December.  Living arrangements are still up in the air but CHOP will work with us on that, although they said this September is going to be one of the craziest times in the history of Philly as the Pope is visiting.  We've offered to host him but it sounds like the Secret Service has already found living arrangements for him.
2. After the ultra-sound/ECHO/and MRI today we know the baby will most likely have bowel/bladder incontinence as well as some severe mobility issues as the muscle growth below the knees has not been good and is irreversible.  What we hope for by choosing the surgery is that the likelihood of needing shunts is lessened & hindbrained herniation is reversed (feel free to look that up on your own) - both could be very crucial to the baby leading a more normal life. 

Yes, some fairly dreary details, although on a bright note, the doctor at CHOP that looks at the heart and cardiac issues said the baby had one of the best hearts he's seen!!!  So you could say our baby will have a "big heart."

This still does not feel like a whole lot of concrete information but we now can start to map out a course of action for the coming months and prepare for the road that lies ahead. 

CHOOSING Joy from Philly

-Jeff

Children's Hospital of Philadelphia

We finally heard from the Children's Hospital of Philadelphia (CHOP) this week and confirmed a consult there for next Tuesday, August 25th.  This is what we had been hoping for but now that the consult is scheduled its getting hard to leave and not know when we will return.  We are hoping after three to four weeks recovery we will be allowed to come home but most patients who undergo the prenatal surgery end up staying in Philadelphia for the remainder of the pregnancy.  If I am allowed to come home it will be under strict bed rest with weekly follow ups in Philadelphia.

The scariest part of this whole process is not knowing how it will affect Peyton and Myles who we've only been away from for a night here and there.  The longest we've been away from Peyton was when we were in the hospital for two nights when Myles was born.  We know that children are resilient and we are so thankful to our parents who are stepping in to take over the "parenting" role for a bit.  We will have the boys with us for a great deal of our stay in Philadelphia if all works out as planned.

The consult on Tuesday will consist of a two-three hour ultrasound to rule out any other issues that were not detected from our examinations/testing here.  There will be more lab work, a physical exam, another amniocentesis and I'm sure lots of needle pricks and prodding.  We are very grateful and appreciative to even be able to make it to CHOP with their rigorous qualification process. 

We would like to send a big thank you to our friends who have sent care packages, notes, meals, texts, emails and phone-calls.  A special thank you to Carelinc Medical for the generous send off.  Leaving work and not knowing when I would see my co-workers again was way more difficult than I ever anticipated.  I am so blessed to work for a company who puts families first and support their employees.  I cannot thank my co-workers enough! 


We enjoyed our last weekend at home doing "normal" things.  Here are a few pics from our adventures. 

Crazy Drivers!

Petting the Sting Rays

Wobbly Camel Ride

(not that this is a "normal" thing we do)

Thank you for reading!

~Shawna

Week 21 - Materal Fetal Medicine by Shawna

Week 21- After a long few days of waiting, unknowns, and scary research online we finally got to meet with Maternal Fetal Medicine on Tuesday, August 11th.  All we were told before the appointment was to plan on being there for 3-4 hours and don't bring small children.  We met for an hour with the ultrasound technician and then the physician.  During the ultrasound it was confirmed that our child has a severe form of Spina Bifida called Myelomeningocele.  In addition to the Spina Bifida our child also has Bilateral Club Feet and Arnold - Chiari Malformation.  We then sat down with our specialist to go over options.  There are two options that we were considering and a third option that we would never consider. 

The first option is the "conventional" route where I am closely watched but able to continue with pregnancy as normal, working and up about.  I would have a scheduled C-section at 37 weeks and the baby would be operated on by a Pediatric Neurosurgeon to close the opening 24-48 hours after birth.  This route has a high probability of your child needing a shunt (80%), your child being in wheelchair or only walking with assist devices, lack of bladder and bowel control and a possibility of cognitive/learning disabilities. 

The second option would be to apply and hopefully qualify for an In-Utero surgery done at one of three hospital across the United States that are able to perform the surgery.  Our specialists refer to CHOP, the Children's Hospital of Philadelphia.  This surgery doesn't come without risks and extremely high standards.  If you would like to read about the qualification process, please click here.  While this option is riskier than the first, it also could afford our baby a better quality of life.  There are no guarantees, but we are willing to do anything and everything for our child to have the best chances for that better quality of life.  We will hopefully avoid the shunt all together and our child will also hopefully have a greater chance of walking on his/her own. 

The hardest part in this whole situation is the hurry up and then waiting.  After our appointment with the specialist on Tuesday morning, I went back for an Amniocentesis to start the process for qualifying for the surgery at CHOPS.  They need to rule out any genetic factors and need to look at all chromosomes to do so.  We found on out Friday morning that all my chromosomes and initial testing came back normal.  The second round of testing from the Amniocentesis is to find the AFP number.


I included a picture of our little one who likes to wave at us during ultrasounds and also do flips so the ultrasound technicians can't see his or her spine.  What a stinker!

Week 20 - Dropping of the Bomb by Shawna

Pregnancy - week 20.  We've been so excited for this week.  This is the week of our Aunt B's (Jeff's sister, Bethany) wedding to her British Beau, Brooky.  We had been wanting to meet his family and enjoy time with them all while celebrating Aunt B & Uncle Brooky.  I also had a 20 week ultrasound scheduled for Friday morning of the rehearsal dinner.  Everything was going great and we were thoroughly enjoying our new British friends.  After my ultrasound we had girl time with manicures and pedicures.  At the rehearsal, I happened to check my phone and notice 3 missed calls from my OB.  I instantly knew something was wrong.  I finally got in touch with the on-call doctor and was told the ultrasound was showing an opening of the spine in the lumbar region consistent with Spina Bifida along with Bilateral Club Feet.  As with any bad news, it felt completely out of left field and I was unprepared to handle the news or even tell Jeff.  I was told I would be referred to a high risk specialist and could expect a call at the beginning of the following week.  I can't tell you how hard it was going three days without knowing if this baby was even going to make it.  Saturday was such a busy day and we welcomed the distraction!  The wedding was absolutely beautiful and we had a fabulous time celebrating Aunt B & Uncle Brooky.