Thursday, May 31, 2012

Things you want to ask about but don't...

Will had his second Botox injections today.  The first were back in November, and Will did really well.  We saw a minor improvement in his leg muscle spasticity afterwards.  Botox injections typically last 3-6 months.  We have been noticing over the past month or so that it has been getting increasingly difficult to diaper Will or bend his legs when he's stressed. It was time to give his legs some relief again.

So we went today.  As with the last time, Will did amazingly well for receiving 4 deep muscle shots - two in his inner thighs and two in his hamstrings (back of thighs).  He never cried because he was scared or in pain - he cried and protested fervently when the doctors and nurses held his legs and arms completely still.  Once the shots were done and they released him, the tears and protests stopped.  Instantaneously.   Touche, Will.

For 4 glorious weeks after the Big One at Hopkins, Will was seizure-free.  He slept peacefully and woke up incredibly happy.  We knew the Next One was right around the corner, but would not speak of it!  You know how we feel about jinxing things that way.  But I have been holding off blogging about it, and I know that people have been holding off asking about seizure activity.

Unfortunately, Will has had three seizures in the past 10 days.  We've worked out a plan with his neurologist, and will be increasing one of his drugs and adding a new one in conjunction.  It is frustrating to be back to this point. 

Two of the seizures have been pretty typical.  One of the seizures was really abnormal - it occurred in the morning after Will woke up (like Hopkins) and affected more of his face than seizures normally do.  We gave him his seizure medication (while trying to remain calm as to not alarm Luke and Will who were awake and nearby) and waited.  It seemed to be taking a long time.  Nate got ready to take Will to the hospital.  At one point, we thought we needed emergency assistance at home and we called 9-1-1.  Within a minute of being on the phone with 9-1-1, the seizure stopped in an instant.  Thankfully the ambulance didn't have to come, and after Will slept off the Diastat, he was doing ok.

From the outside looking in, it probably looks like things just returned to typical around here.  You'd probably be right.  Those quiet recovery weeks post-Hopkins were necessary and appreciated, but totally abnormal.  Where would we Slaviks Outnumbered be without a perpetually elevated level of worry?

Tuesday, May 29, 2012

Mudcat Love

Aside from the Miracle League, the boys have never been to a baseball game before.  We've been so busy doing other fun things, that taking a trip to see our local "big" team - the Durham Bulls - never really came to mind.  Don't get me wrong, we are baseball fans.  We just never made it out.

A couple of weeks ago, the Carolina Mudcats came out to a Miracle League game to be buddies for the boys.  They were awesome guys, took a real liking to Luke and Will... but I will be honest, I hadn't ever heard of them.  One quick Google search later, and I learned that the Mudcats are the Single A affiliate of the Cleveland Indians, and play just 25 minutes from our house.  Who knew.

Luke was still talking about his buddy Salazar a couple of weeks later.  The guy really made an impression on Luke, and Will's buddy Flores tried so hard to make Will enjoy baseball (tough sell for Will).  I decided it was time to head to Five County Stadium and cheer on our buddies.  Memorial Day was coming up, and my dad and Tammy (avid baseball fans) were visiting... and the Mudcats were at home to take on the Winston-Salem Dash.  Perfect.

I wasn't able to find handicapped seats online.  One call to the Mudcats front office, and we had 7 tickets right on top of the third base dugout.  There was a place where we could wheel Will in comfortably and all sit together.  On our way we went.

The day was warm, but the section of the stadium where the handicap seats are is open from the field to the concourse and there was a lovely breeze.  We quickly made friends with the family next to us (who - ironically - had 10 year old boy twins, one of whom had cerebral palsy).  The restrooms, food stands, and beer sellers were just steps away.  The sun was at our backs the whole game - score!  No squinting.

There were fun activities on the field in between innings - Muddy the Mudcat mascots racing on four-wheelers around the infield, ceremonies to honor local troops, sack races, and the quickest tug-of-war you ever saw.  Luke and the 10-year old twin made friends and palled around the open area behind our seats with Matt in tow.  Will did the best that could be expected with all the noise of the crowd.  I think with more exposure, he'll do great.  He didn't even flinch when they launched fireworks after a Mudcats home run - progress!  A year ago, the sound of fireworks would have sent him into a screaming fit.

It didn't matter that the boys didn't know the rules of the game.  What matters more was the excitement on their faces when the crowd went wild and they smiled and cheered just because everyone else was.  And that they had their first ballpark hot dogs.  And that Matt now walks around the house chanting "we will, we will raaa you, raaa you," all the while clapping his hands and stomping his feet in time to Queen.

We all had an awesome time.  The Mudcats put up a valiant effort (we even saw Flores pitch) but in the end, they lost by 2 runs.  It didn't really matter to us.  I think its safe to say we've found a new summer pastime.  The Mudcats are a top notch organization and really make it effortless to enjoy an inclusive, all-American, family night out... wheelchair or no wheelchair.

Monday, May 28, 2012


I may have said this before, but I will say it again: Will loves to be played with.  I am not talking about light delicate little baby games.  I am talking rough and tumble, 'I am all boy' type of play.  The rougher the better.  Most people are unsure of how to handle Will on a daily basis, so the idea of tossing him over your shoulder and running around the living room is probably an insane concept.

Thank goodness Will has been blessed with a daddy who likes to play and isn't intimidated by cerebral palsy.

Nate invented a game a while ago, which he aptly named "Steamroller." Basically when one of the boys is lying on the ground or on their bed, Nate would log roll over top of them while yelling "STEAMROLLER!"  This quickly became a popular game in our house.  There were only two rules: no rolling over heads and no wearing shoes.  Otherwise, everything was fair play.

You might think that with low muscle tone and limited muscle control, Will would have to take a rain check on the Steamroller.  You'd be wrong.  With a little help, Will can steamroll over his brothers like he was made to steamroll.  And once they realized that Will was good at dishing it out, they were quick to steamroll right back over him.

Before you panic, Steamroller is always supervised.  No g-tubes are snagged or necks sat upon.  It is all good, pure boy, rough housing fun.  And the miles-wide grin on Will's face says he loves every moment of it.  Even Otis gets involved - sneaking in ear licks when he can and avoiding having his tail rolled over!

Thursday, May 24, 2012

Fort Macon

Whenever we go away for the weekend, we always seem to seek out a historical/educational place to take the boys. I think of it kind of like we're taking them on a history field trip. Of course, living in North Carolina means that we visit a lot of Civil War era places!

Our last stop before heading home from the beach was at Fort Macon, near Atlantic Beach.   And now for your history lesson of the day... Fort Macon was built to replace Fort Hampton - which was intended to protect Beaufort Sound (the pirate Blackbeard's old stomping ground) from the British during the American Revolution.  As Nature would have it, Fort Hampton was plummeted into the ocean after a particularly ferocious hurricane and years of beach erosion, and Fort Macon was built to replace it.  In a more sturdy location.

Fort Macon was commissioned after the War of 1812 showed our nation's leaders that our coast needed to be fortified.  It was completed in 1834 and lived a pretty boring life until two days after the start of the Civil War, when it was seized by militia forces from Beaufort.  The Confederate Army held onto the fort until the middle of 1862, when the Union forces lead by General Burnside attacked the Fort.  The Union Army held the Fort for the remainder of the Civil War.

The US Army had troops at Fort Macon until 1877 - 11 of those years, the Fort served as a military prison.  In 1903, the Army abandoned the Fort and it sat vacant and falling apart until 1924, when it was sold to the state of North Carolina for $1. During the New Deal, the Civil Conservation Corp restored the Fort and built recreation facilities.  

For its last hurray, Fort Macon was rented by the US Army during World War II, to protect the coast from attacks from the east.  Coast Artillery troops occupied the Fort until 1946, at which time it was returned to North Carolina. 

The Fort is beautifully restored.  It was not built in the era of safety, however, and we were met at the entrance with a sign that read:

"This fort was not built for safety.  There are ledges and sharp edges and long ways to fall.  Stay away from the edge.  Do not run.  Be aware of your surroundings."

To me this sign read:

"Why the heck did you come here with three kids... one of whom runs everywhere, loves danger, doesn't listen when you say stop, and will probably fall and break every bone in his body?"

So I grabbed Matthew's hand through his multiple protests, Will was in his backpack (oh yeah, the Fort wasn't built in the era of the Americans with Disabilities Act either... definitely not meant for people in wheelchairs!), and thankfully Luke was obedient enough to stay close.  And we entered, bravely, slightly panicked, and aware of our surroundings.

The boys all really enjoyed themselves.  We had a cool day, with slightly overcast skies - so Will enjoyed being in the backpack and walking around with Nate. 

The Fort is surrounded by a moat, so you have to run walk across a wooden bridge to get into it.  You also have to walk through a heavily gatehouse, which was pretty cool for Luke and Matt.

Once inside, we could see all the beauty of the Fort. The grassy courtyard, the restored cannons, the whitewashed brick walls, steep stairs with ornate handrails leading to the parapet, the proud American flag. We all were very impressed and explored the grounds and the beautifully restored vaulted casements (rooms) that made up the living quarters for the troops. The rooms now house different museum exhibits chronicling the history of the Fort.

Once we were done inside, we ventured back across the wooden drawbridge and took the steepest steps EVER down into the outer ward surrounding the inner fort. These rooms hadn't been restored as intricately, and were pretty damp... but still very interesting to see.

My family always did historical-type trips when I was growing up - Gettysburg, Antietam, Monticello, Appomattox Courthouse, Mount Vernon, Leesburg, Valley Forge, and every National Park on the east coast. It was the norm as long as I can remember and it was fun, and I learned to appreciate a lot about our nation's history because of it. My hope (perhaps not realistic, but still my hope) is that with us starting Luke, Will and Matt on a similar path at a young age, they will know that just because its something educational, doesn't mean it can't be fun too!   As long as you walk.  And don't fall off steep ledges.

Tuesday, May 22, 2012

True Pisces

If Luke and Will had been born on their due date, they would have been born under the sign of Gemini.  Though I knew from the beginning that it was unlikely that they would be born on their due date or in that astrological sign, I thought it was so cool because Gemini are twins.
As it was, Luke and Will chose to be Pisces.  Slimy, scaly, stinky fish.  Just kidding.  Some of my favorite people are Pisces. 

In true Pisces fashion, Luke and Will love the water.  They have never been scared by the immensity of the ocean, the depth of the swimming pool, or that funny sound the bathtub makes when the last of your bathwater is sucked down the drain.  If it contains or involves water, they love it.  Perhaps you recall Luke's first introduction to the ocean when he was 2 (where he yelled "bring it on!" to the waves crashing around him) or the look on Will's face when he's doing hydrotherapy.

Case in point: the ocean this weekend.  For whatever reason, when we went to the beach, there were no other people in the water.  The water was 75 degrees and the waves were moderate.  Luke went right in.  Followed closely by Nate and Will.  They stayed in the water for an hour and only came in because poor Luke and his 0% body fat were shivering. 

... and then there's Matthew.  Bull-headed Taurus Matthew.  Not a Pisces, or any other Water sign for that matter.  Matt took one look at the ocean, and sat his butt down in the sand (Earth sign!).  Then he started rubbing his face and smeared his sunscreen all in his eyes.  Then the tears started.  Matthew was not a happy beach-goer.  After a while, he got irritated with the sand on his toes and tried to start picking it off, grain by grain.  He quickly realized the futility in that and insisted that I wipe his feet off with a towel and sit him in a beach chair.  Thankfully he's got a skinny brother who couldn't stay in the ocean for too long... otherwise Matt would have sat there mad for a long time.

Oh well, two out of three ain't bad.

Monday, May 21, 2012

Late spring, perfect beach weather

Several weeks ago, I read online that the North Carolina Aquarium at Pine Knoll Shores was hosting four African penguins all summer (on a "summer vacation" from Six Flags in California).  Matt loves penguins and their waddles, so I thought it would be fun to take the 3 hour drive to the beach to catch up with some tuxedo-ed feathered friends. 

As things typically go when I plan a little trip, the more I dug in and got excited about a weekend away, the more involved our trip got.  I stumbled upon a place to stay just a few miles from the aquarium - a 60s mod beach side hotel called the Atlantis Lodge.  The Lodge was built in a very 1960s architectural style by people who were searching unsuccessfully for a pet-friendly hotel at the beach.  The hotel is still going strong these days, and has really embraced its 1960s lineage.  The rooms have been upgraded and are modern, but are decorated in a mod 60s style.  They don't use a computer booking system - everything is still done over the telephone with reservations kept in a ledger on the desk.

I would say of the people that were staying at the Lodge when we were there, 50% had dogs with them.  The hotel provides doggie treats rather than chocolates on your pillow, sheets for those whose dogs sleep on the bed or couch, and there are scoops and bag stations on the property.  Pine Knoll Shores allows dogs on the beach, so Otis had an awesome time playing in the sand and water!

Our room had two queen sized beds and a pull out couch (with 60s era wood paneled room dividers between each). It had a large closet/storage area and a small kitchen and table. We were able to eat breakfast and lunch in the room each day.    And the best part is that each room in the Lodge is oceanfront.  So we kept the sliding door open all the time and heard/looked at the ocean every chance we got.  I think we'd all happily go back there again.  Especially Otis!

We spent a long morning at the aquarium, though I will tell you that we were disappointed with the penguin exhibit!  Thankfully the rest of the aquarium was awesome.  Luke and Matt (and Nate!) got a kick out of the otters and everyone except Matt really enjoyed watching two divers spend some time in a huge 300,000 gallon shark tank.  

We've only ever taken Will to an aquarium once before, and he didn't have a great time.  As with most things, we're never totally sure what it is that bugs him... but the ideas that we have thrown around are the darkness (because of his CVI, it could be difficult for him to see anything) or the fact that it is a new experience and Will just doesn't really like new experiences.  We came a bit more prepared this time, so Will had his iPad and some snacks for any particularly cranky moments.  He really enjoyed the outdoor boardwalk at the aquarium and watching the jellyfish tank.

There are two other aquariums in North Carolina... they're all a little bit farther from our house.  I'm always looking for excuses to explore more of our state!  Maybe we can find some other hotels as cool and unique at the Atlantis.

Note to self: When preparing Will's applesauce and Carbatrol (seizure medication) each morning, the counter tops at hotels are not as tall as those at home!  Little hands (such as those belonging to Matthew) can reach that bowl, and know where the forks are.  When you turn your back (even if just for a moment!), that little boy is quick to load his face (and thankfully, the front of his shirt) with Carbatrol and applesauce.  Hence yesterday's comment about calling Poison Control.  Thankfully the dosage that Matt got was small and within the therapeutic levels for his size.  No trip to the hospital necessary, and no side effects.  Doesn't stop a little bit of mama guilt though.

Sunday, May 20, 2012

Long walk

The past couple of weeks have seemed like a much slower paced end to a very long week.  With all the hustle and craziness of Johns Hopkins, then coming home and finding our groove... it was all a lot to take in and adjust to.  We were all exhausted and working through our time apart.  I've used the work "recovering" to describe this time, which seems pretty accurate for all of us, especially Will.

We seem to have found that groove again, and things have been... well... kind of boring.  That probably sounds strange.  It isn't that I *enjoy* when things are hectic, but my personality definitely leans me towards a life of excitement rather than one that is slower-paced.  I become more efficient, inspired, and energetic when we have a lot going on.

So we haven't really had a lot going on in the past couple of weeks.  So my inspiration isn't really high.  Hence the lack of frequent blog posts!  Thankfully, our groove has been got... wake up, go to school, go to work, come home, have a temper tantrum, make dinner, take baths, snuggle, go to bed, repeat.

We were finally mentally ready to step out this weekend for some time away... our first weekend away for fun since we went to Hungry Mother in February.  Maybe we would have been better off staying home :)  Let's just say that Poison Control had to be called.  But thankfully, Will didn't vomit (which he has a tendency to do on trips such as these).

I am running out of awake time this evening to tell you about our trip, so I promise to post more photos and tell the story tomorrow.  For the time being, enjoy the photo at the beginning of this post - it is one of my favorite from the weekend.

Monday, May 14, 2012


Thankfully the odd hot April weather has broken here in central NC for a little while.  I know that the disgusting heat and humidity of the three middle months is just around the corner, though.  So while we can, we're spending a lot of time outside.  This includes a lot of cooking out and eating dinner together on our Little Tikes outdoor picnic table.  We probably look silly to our neighbors, but since we don't have an adult-sized outdoor table and chairs, its (ever so slightly) better than sitting right on the deck itself.

Afternoon outdoor sun on our back porch inspires me to run inside, grab the camera, and snap some photos of my boys enjoying some family time together while we get ready for dinner.  With our busy days, 3 schools, and 5 different daily directions, its finding these moments together that allow us to take a deep breath and soak it all in.

Thursday, May 10, 2012

The Call

We got it. Finally. The call we've been waiting for since we left Johns Hopkins on the afternoon of April 24. The results.  Originally we were told that we'd be getting a call from one of our two primary doctors about a week after we were discharged.  They would be meeting at "the conference" the Tuesday after we left. 

"The conference" is a group of neurologists and neurosurgeons who work closely with the patients of the epilepsy monitoring unit.  A true brain trust (in many senses of the words).  With Hopkins being ranked #1 year after year in US News and World Report for neurology and neurosurgery, it can be a little intimidating to think about how incredible this group of people is.  And here they were, ready to talk about Will.  They typically meet each Tuesday to talk about the recently-discharged patients of the EMU.

Unfortunately the "best of the best" are often presenting at international neuro conferences - as was the case on the first Tuesday after we were discharged.  Then the following Tuesday, they were catching up from not meeting the previous week.  Ugh.  I know you can't rush greatness, but we were getting antsy.  I left messages for assistants and coordinators to call me back several times over the past couple of days... just to figure out where the decision was.  I am sure I was annoying.  But I was as patient as I could be about this whole thing.  And I did not get to be such a great advocate for Will by being patient!

So the call came in this evening.  Our amazing, kind doctor and her best fellow.  I knew the moment they started talking that the conference had decided that Will was not a surgical candidate. 

They told me that they presented Will to the conference as they would any other patient.  They showed his MRI to the group and they discussed the typical seizures that we see at home.  Those things all lead people to initially believe that Will is a slam dunk candidate for surgery.  He has remarkable brain damage on his right hemisphere and his seizure side effects only affect his left side.  To be a surgical candidate, your seizures must be localized to one hemisphere of your brain.

Then they showed the group Will's seizure EEG.  And the room got silent.  The EEG actually showed that Will's seizure started on the left side of his brain.  Then it spread quickly and completely throughout his brain.  As I said in my Big One post, his seizure affected both sides of his body.  And there is audio on the video record of the seizure when I say "his eyes are fixed to... the right?" because this was odd and unusual.  At home, Will's eyes fix to the left during a seizure.  Always.

Because of this, and because they only have one seizure to go on, they feel as though the risks of surgery outweigh the benefits for Will.  Epilepsy surgery is not an exact science.  The neurosurgeons study the EEG and based on their experience, they decide a volume of brain to remove. 

In Will's situation, because his brain damage occurred at such a young age and because he has a large mass of brain missing from the right side of his head, the likelihood is that the left side of his brain took over doing some of the function that the right side typically does.  This is neuroplasticity - the brain making new connections - and typically it is a good thing.  But because of this neuroplasticity, no one wants to take the risk of removing a part of the left side of Will's brain.  They just can't be sure what function they might actually affect.

My initial reaction was complete disappointment.  As much as we had gone to Hopkins to determine IF Will was a surgical candidate, I also believed in my heart that he WAS a candidate.  This was just validation.  And then, while they continued to talk about how great of a kid Will was, my brain wandered.  For a second, all I could think about was where else should we go to get someone who is willing to get this surgery?  But I stopped that thought almost as soon as it started. 

We went to Hopkins because they're great at this.  They are one of the top neuro hospitals in the world.  And the top doctors were telling me that they would not perform this risky surgery on Will.  Did I really think it was a good idea to shop around for someone who was willing?  Ummm... no.

I brought myself back to the present, and we started talking about our options for Will moving forward.  There are several new drugs on the market that have been successful at controlling Will's type of seizures.  We can look into the ketogenic diet again.  And if we want to, there is an option for a different surgery called a vagus nerve stimulator, which acts similarly on the brain as a pacemaker does on the heart.  None of these is typically as successful as the surgery (Dr. V's quote: they work on 30-50% of people about 30-50% of the time), but it doesn't hurt to have more options to try out.  The vagus surgery is not nearly as risky as epilepsy surgery, and is done regularly at many hospitals across the US (including our NC hospitals).

The final message that they left me with was this: Will's epilepsy is actually pretty well controlled with his current medications.  While his seizures are scary and disruptive, his non-medicated seizure showed that things could be a lot worse.  They thought that having him evaluated was 100% the right thing for us to do. 

I guess that's it for now.  We have to noodle over these recommendations with our neurologist and determine which direction we want to go.  As disappointed I was originally to hear that Will is not a surgical candidate, my mama heart is relieved that he will not undergo the dangerous and invasive epilepsy surgery.   I'm gonna go hug my boy now.

Tuesday, May 8, 2012

On How Things Started

In addition to the Brady Anderson photos and Paddington bears, one of the other treasures I uncovered during our yard sale preparation was a 10 page essay that I wrote in April 2007, the month after Luke and Will were born.  I had forgotten that during those weeks when I was home from work, alone, miserable, and unable to drive; Luke and Will were in the NICU; and Nate was back at the office, I had written my first hand account of their birth.  I was in desperate need of an outlet for what had happened.  I just found the file on our home computer. 

This is Nate's story too, and aside from him, I've never shared this written version of events with anyone except my dad.  Over the years, people have asked me about my birth story... on how we started.  I usually skip over the details.  But I think I am finally ready to share.  So here is the story of Will and Luke.  Unedited.

On How Things Started

It is hard for me to imagine that a life can be defined by a single moment. But I feel as though that a single event in the early morning hours of March 11, 2007 has defined my life in a way that I had never imagined.

Aside from finding out that I was carrying twins, I feel as though my pregnancy was unremarkable. I felt good, never got morning sickness, and was going to all my OB and fetal-maternal medicine appointments. During my first appointment with the FMM, I was told that babies born after 32 weeks have almost no risk of long term problems. He told me to circle March 31 on my calendar… this was our goal day.

Nate and I looked forward to the ultrasound appointments and really got a kick out of seeing our little guys interact in utero. Although I do recall always having a feeling of dread and fear before each appointment, each ultrasound revealed brains forming, swallowing, and bone development. My blood pressure was good, and I passed all the glucose tests that I had.

On March 10, we attended a friend’s birthday party. I was just 29 weeks pregnant and starting to get swollen ankles, so spent the majority of the day sitting down and watching a basketball game. Nate and I came home, did some things around the house, and around 10pm, I went to bed. I had been starting to sleep poorly in our bed, so decided to go to sleep in the guest room. I remember feeling a little tug on the right side of my belly as I reached over to turn out the light.

A little after midnight, I woke up for my first nightly trip to the bathroom. I noticed that Nate was in the bonus room, playing a video game. Not wanting to wake up too much, I left the light off in the bathroom and sat down to go pee. I had gotten in the habit of not flushing at night so that I didn’t want up Nate, so I wiped, stood up, and was about to go back to bed when I stopped and looked back at the toilet. What made me look back? To this day, I have no idea.

When I looked back, the toilet looked dark. My sleepy brain thought this was strange, but was not immediately alarmed. So I flipped on the light. And what followed was my life-altering moment.

The toilet bowl was filled with blood. Bright red, shockingly red. Lots of red. From me. From me… from my babies?

I panicked. I screamed for Nate. I started to shake. I ran into the guest bedroom to see if the sheets were covered in blood. Thankfully they weren’t. When I got back to the bathroom, Nate was there. I pointed to the toilet. He pulled the only “guy move” of this whole experience when he went to the toilet and flushed it away. I don’t recall what he said, but in my mind it was something along the lines of “It stopped, right?”

Nate did his best to keep me calm. I sat back on the toilet as he went downstairs to get the emergency telephone number magnet for my OB. I periodically would check to see if I was still bleeding. Every time I looked down, the toilet water was a frightening shade of red. Nate called the OB and left a message with the answering service – “my wife is 29 weeks pregnant with twins. She is actively bleeding. Please call us back and tell us if we should come to the hospital.”

We waited 5 minutes. No call back from the OB. During this time, we prepared to go to the hospital. The bleeding was not stopping. We put poor Otis in his crate. I changed out of my pajama pants into granny panties with a baby diaper in them, and my most comfortable maternity outfit.

Another call to the OB answering service. Still no call back from the OB. And I am still bleeding.

We got in the car. We didn’t take anything with us. I hadn’t had time to pack my hospital bag yet. And I sure didn’t have a “what the hell do we do if we go into labor at 29 weeks” bag either.

On the way to the hospital, I called the OB answering service for a third time. I left a third message. The answering service attendant could not believe that we had not received a call back.

The car ride was silent. I knew that both Nate and I were fearful… and that nothing that we could say would make the other feel better.

Because we had not gotten to talk to our OB, we did not know where to go once we got to the hospital. We parked at the Emergency Room and checked in. We were amazingly composed as we told the night receptionist our story – “29 weeks, twins, active bleeding.” In what seemed like seconds, there was a nurse with a wheelchair calling out my name. She sat me down and wheeled me to the birthing center.

I didn’t want to be in the birthing center. I didn’t want to believe that I would be in the hospital for more than a few hours as they figured out why I was bleeding and made it stop. That’s all I wanted to happen. Make it stop. Let me go home and put my feet up and incubate these babies just a little while longer. We weren’t at March 31 yet… things weren’t going to be okay.

I was ushered into a room and introduced to two nurses. I can’t remember their names. I remember that I liked one of them a lot. She was calming. She had an unusual name. She helped me change out of my bloody baby diaper and into a hospital gown. She asked me if I wanted to keep the granny panties. I cried.

Nate helped me back into bed. The nurses hooked me up on a number of monitors. I can’t remember everything, I just know that there was at least one monitor for each baby. It seemed like my belly was covered with bands with Velcro straps. They gave me an IV and put a large absorbent towel between my legs.

It seemed like only seconds had passed before the friendly concerned face of a male OB from my OB practice arrived. He talked with the nurses and looked at the monitors. Then he did a pelvic exam on me, and said he could see that I was actively bleeding and that I was one centimeter dilated and fully effaced. The monitors showed that the boys were doing fine, but that my uterus was contracting. They were going to start me on magnesium sulfate in hopes of stopping the contractions. The OB seemed hopeful that they could stop the contractions, keep me in the hospital on observation for a few days, give me steroids to develop the babies’ lungs, and send me home on bed rest. God, I wish that is what happened.

Because I was receiving the IV mag sulfate, I had to have a Foley catheter. This was not a very pleasant experience, but minor when compared to the mag sulfate itself. The mag sulfate hit me like a ton of bricks. All of a sudden, I felt as though I was one thousand degrees. Nate got ice from the hall and rubbed it on my feet. It was a great feeling and distraction for me, and I think it helped him feel as though he was helping. I know how helpless I felt with what was happening to my body and my concern for the babies. I can’t imagine how he felt, being forced to stand back and watch it and not be able to do anything.

Around 1am, we helped the nursing staff turn forward all the clocks in my room. It was now daylight savings time. I wondered if my babies were suddenly one hour older, one hour closer to being born healthy. Nate called our parents to tell them what was going on. I don’t think I have ever heard him as stoic as he was on the telephone that night. I think now that he was trying not to lose it in front of me, but also trying to protect our parents from the intense fear that we were facing.

My contractions didn’t stop with the large initial bolus of mag sulfate. The nurses tried to leave us alone for a little while to “get some rest” but we just laid there and watched Will and Grace on TV without the volume. Any time the boys would move, the nurses would come in and reposition the monitors. I was uncomfortable and every time I turned over, I felt a large gush of blood come out of me. I cried and called the nurses again.

They gave me another bolus of mag sulfate. Nate came back with more ice. By this point, they had called for an ultrasound technician to come in and take a look at the boys. She looked sleepy and I remember apologizing to her for making her wake up to come and check on me. Nate looked over her shoulder as he did to the technicians at all of our other ultrasounds, and looked pleased as she could see the boys moving around and their hearts beating at a good rate. She estimated their size to be between 3 and 3 ½ pounds.

Afterwards, the OB came back in and explained that my contractions still weren’t responding to the mag sulfate. He was going to give me a shot of steroids to help the boys’ lungs develop and said it would take 24 hours for their lungs to respond. I took that to mean he thought we could stave off delivery for 24 hours. Now, looking back, I just think he was praying for it like we were.

He also sent in the neonatal nurse practitioner from the high risk nursery. She was horrible. All she did was spout off scary statistics about babies born at 29 weeks gestation. Her monologue is one that I cannot remember a single specific word from. I just wanted her to leave. I’d read all the books. I knew the statistics that she was reciting. I knew about brain hemorrhages, chronic lung disease and hydrocephalus. All I wanted was for her to say something positive. She didn’t and I was happy when she left. I cried. Nate was angry.

The nurses returned again. They told me that my contractions were about 3 minutes apart. From our birthing class, I knew that this was bad. I told them I couldn’t feel any contractions. They looked at the monitor and told me that I was having a strong contraction at that exact moment. I tried to figure out what I felt, and determined that the only thing that I felt was a slight twinge in my back. We continued our conversation as the contraction subsided. At some point within the next couple of minutes, I was in mid-sentence when I stopped and said “I am having a contraction right now, aren’t I?” They nodded emphatically. I told them that if I hadn’t gotten out of bed to use the bathroom, this contraction wouldn’t have woken me up from a light sleep. They looked concerned.

When they left, our room was quiet again. Nate spent a while holding my hand. He hadn’t cried the entire time. I knew he was scared, but I think that we both still held out hope that things were going to turn in our favor.

Around 6am, my two nurses and OB abruptly burst into our room. They explained that one of the babies’ heart beat was starting to become erratic, and they were concerned that the uterine contractions were starting to cause the boys distress. My OB explained that they had done everything that they could to stop this from happening, but that these babies were going to be born today. They wanted to do an emergency cesarean section.

Nate looked into my eyes, and for the first time, I truly saw his fear. He was trying so hard to stop from crying, but I could see his eyes welling with tears. We didn’t know what to say to each other, we didn’t have to say much. We simply looked at each other through teary eyes and nodded ever so slightly and said “okay.”

They pushed my bed out of the birthing room and wheeled me through a number of doors. Suddenly I arrived in a stark room that was freezing cold. Nate couldn’t be there with me as they prepped, but they promised to bring him back when the c-section began. Someone did one final ultrasound to see where the boys’ heart rates were. They said later that they had to do that to see what kind of c-section I was going to have. If the heart rates had been poor, I would have been given general anesthesia and completely knocked out, and the boys would have been taken out within 1 minute of the beginning of the procedure. Because the heart rates were good, I was able to stay awake for the procedure.

In my memory this prep time passed within seconds, but in speaking with Nate afterwards, it seemed to him to take an eternity. He was ushered into a waiting room where two people were sleeping, so he instead chose to pace the hallway. In the operating room, I was being moved to the operating table. I was told to hang my legs over the edge of the bed. A nurse whose name I never caught helped me to stay upright as the anesthesiologist prepped my back for a spinal. As he told me to hold still, she looked into my eyes and held me tight. A lightning bolt of pain shot down my left leg as the anesthesiologist injected the numbing medicine into my back. All I can remember is her eyes… sympathetic and kind. She helped me lay back on the table, and was gone in an instant.

All of a sudden there was a sheet across my bust, my glasses were taken off of my face. I heard my OB saying that they were ready to begin. I called out for Nate. He arrived by my side and took my hand as the OB was making his first cut.

I cannot remember in what order things occurred. I remember that the OB tried to joke with me and tell me that he was having a hard time getting through my abdominal muscles because they were thick and strong. I remember wanting to thank him for ruining them. At some point, I started having intense nausea from the spinal. There was nothing in my stomach for me to vomit, so I dry heaved for what seemed like an eternity. I am sure that Nate held the pink kidney-shaped basin, but could not see anything without my glasses. I remember the OB telling me that there was a lot of blood in my uterus.

At 6:36a, we heard our first baby cry. “Baby A is out!” said the voice behind the curtain. For several months prior, I had a daydream about this exact moment. In my daydream, I turned to Nate and said something about this being the only time in our lives that we were going to have just one child, as we prepared for Baby B to make his entrance. But things didn’t happen this way. The time in between Babies A and B was filled with angst about Baby B getting out. I just wanted to hear his cry as well. There is something ingrained in you that makes you think if you can just hear them cry, everything is going to be ok.

The OB told me after Baby A was out that there was no blood in his amniotic sac. This was a good thing. They walked him past curtain for us to see, but I couldn’t see anything because I didn’t have my glasses. The neonatal team whisked Baby A away to another room to do his Apgar assessment. The OB continued up into my uterus to find Baby B. He opened up the amniotic sac, and again announced that there was no blood inside. He pulled Baby B out at 6:38a, and we again anxiously awaited the cry. I remember not hearing anything at first. I was immediately scared. Then a small cry emerged from behind the curtain. He was walked past the curtain, and even though I could not see, I could see that the middle of his face was black with bruise. He, too, was whisked away. I sent Nate with the boys.

Every mother has an idea of what the moment that she names her child will be like. In my mind, it is a quiet solitary moment where I have just performed the feat of birthing two full term baby boys who are completely healthy and each weigh 8 pounds. Nate wipes the sweat from my brow, and the nurse hands me two babies in blue blankets both quietly sleeping. I look lovingly to the right and name Baby A Luke Pascall in honor of my paternal grandmother’s family. I look lovingly to the left and name Baby B William Rost in honor of my maternal grandmother’s family. In actuality, I believe that we named Luke and William as they were being paraded past us on their way to the neonatal team.

After Nate left my side, there wasn’t anyone close by my head for me to talk to. This was not a big deal until all of a sudden, I could not breathe. I tried to cry out, but no one seemed to hear me. I started hyperventilating, and this must have set off alarms. “Some… thing… is wrong… I … can’t…. breathe…” was all I could muster. The OB laughed behind the curtain and all of a sudden I could breathe again. He told me that he was clearing out the contents of my uterus, and that he had been pushing on my diaphragm. “See?” he asked, as he pushed on it again and the uncomfortable feeling in my lungs returned. I look back and now and think this is a funny story, but at the time, it pissed me off.

Nate returned after some amount of time, though I have no idea how long it was. He said that the boys looked good, and that they were being taken to the high risk nursery. The boys had done pretty well on their one and five minute Apgar tests, better than they had thought 29 weekers without steroids could do. Luke had come out weighing 3 pounds and 7 ounces, Will had weighed 2 pounds and 15 ounces. For 29 weekers, my boys were huge. The nurses immediately told me that I had done a great job in growing babies, but I couldn’t fight the growing sense of doubt and guilt that I had not done a good job holding on to them.

The nurses and doctors that had been with me through my ordeal through the night changed shift at 7a on the dot. I do not recall seeing the OB or the nurse with the strange name or the nurse whose eyes had understood my pain during the spinal again that day. The team clearing my operating room was completely different.

I was wheeled into a recovery room and immediately covered with warm blankets. As I came off of the anesthesia, my body shook violently and I felt very cold. I was in a good mood, and Nate and a friendly nurse were by my side. Every couple of minutes, the nurse would push painfully on my uterus to void blood and encourage my uterus to start firming up. As the spinal wore off, this process hurt more and more. It seemed to take a while for them to get the order for me to be able to start taking IV pain medication. I was being given pitocin through my IV to help my uterus continue to contract.

After an hour, I was able to leave the recovery room and go to the room where I would stay for the next 4 days. They asked if we wanted to go into the high risk nursery on the way to my room, so of course we went.

The high risk nursery is a scary place for a newcomer. Its often dark and no one speaks more loud than a whisper. There are constant monitors beeping, ventilators moving, and the littlest babies that you’ve ever seen covered in tape and rubber tubing lying motionless amongst it all.

I was wheeled into the nursery laying down on a gurney. I had to put on another hospital gown and spray my hands with anti-bacterial mousse before I could enter the room that held my sons.

I met William first because his radiant warmer was the closest to the entrance. I tried to look at his face, but had a hard time because there were so many tubes blocking my view. He was on a CPAP machine to help him breathe and also had antibiotic gel on his eyes. The only thing I could see were his lips, and from my vantage point, it appeared as though he had a cleft palate. The first question I asked about my son was “what’s wrong with his mouth?” Looking back, I think that is a horrible first thing to ask. At the time, hopped up on narcotics, without having slept for more than 24 hours, and having been through the most stressful day of my life up to that point, it seemed like a perfectly normal thing to ask. The nurse assured me he was fine and did not have a cleft palate.

I could see that little Will had very thin blonde hair. His arms and legs were long, and he hadn’t yet had the opportunity to fill in all of his skin. Really, he looked like a little old man. I felt as though I had to try very hard to see my son beyond this baby with more tubes and monitors than I could keep track of.

Luke was in the radiant warmer to the left. He had all the same tubes, monitors, and extra skin that Will did. At this point, the only differentiating characteristic was that Luke had dark wavy hair. The nurse explained that they had given each boy a dose of surfactant, which would help their lungs open up. They seemed to be doing well. The nurses had made tags for their ankles with my name on them. They had also made tags for their beds with their names, birth date and time, weight and length. It was a surreal thing to see this name that you’d been keeping secret for months and excited about giving attached to a baby that you weren’t ready to see yet. And to see their birth dates, weights and lengths made me sad. It should have been such an exciting day… their birthday… the day Nate and I became parents. But for me, it was a day filled with fear, angst, and guilt.

I was not allowed to get out of my gurney during this first trip to the nursery, so I met my sons laying down, just as they were. I had an IV attached to my left hand, and three bracelets on my right wrist. One for me, one for Luke and one for Will.

We left the nursery feeling as though things were ok. Once I was settled into my room, I met the nurses and was told that they wanted me up and walking as soon as possible. Because I’d had surgery, I was at risk for blood clots, and walking encourages circulation, thereby decreasing the risk of clot. I did not feel up to walking for another couple of hours.

Because things had happened so quickly, we had not had the opportunity to call our parents back to let them know that the boys had arrived. The last they knew was that we were in the hospital and I was bleeding. I wasn’t prepared for the questions or the tears that I knew would come if I had to explain to three sets of parents what had happened, so Nate made those calls.

I do not recall the order in which Nate called our parents. Prior to our birth experience, this seemed like a big deal to me… who got the first call when the boys arrived as expected on May 25? I’d also stressed over who was going to be allowed in the birth room with me (only Nate), and who was going to stay at our house while the boys and I were in the hospital.  Looking back, it was all so trivial.

My stepdad Scott answered the phone when Nate called my mom. He was definitely asleep when he took the call, because when Nate said “the boys have arrived,” Scott’s response was something along the lines of “good, thanks for calling.” A couple of minutes later, my confused mother called back. Scott had simply told her that the baby was here and had laid back down. She got worried for a number of reasons, as she knew that we were not due for 11 more weeks and that there were two babies, not just one! Mom and Scott were in upstate New York for one of Scott’s jobs, so Mom started figuring out how she was going to get from there to Raleigh as quickly as possible.

Nate was unable to reach my father. We’d left him a couple of messages at home and on cell phones during the night, but hadn’t gotten a call back. Although I didn’t know it, they had spent the weekend with Tammy’s family in Pennsylvania and did not get good cell reception. My grandmother was finally able to reach them. Late on the night of March 11, my mom, dad and stepmom arrived to be by our sides.

I think the hardest call that Nate had to make was to his parents. He wanted to be so strong and confident so they would not worry, but was feeling so scared and fearful underneath. I do not think that anyone really knew what to say. Nate’s parents would be heading down in a couple of days.

The following day went by very quickly. Perhaps because of the post-op medications, perhaps because of the fear. On their second day of life, Will’s blood work came back oddly and his neonatologist ordered an ultrasound of his brain, heart, and abdominal organs to rule out bleeding. Will’s ultrasound revealed a huge hemorrhage in his brain and liver encapsulation. I remember when the neonatologist came to give us the news. I was sitting in my hospital bed, catching my breath and feeling like things were ok. The second I heard “brain hemorrhage,” I felt as though I died. I cried… sobbed.. hurt like I had never done before.

The neonatologist was kind and quiet. He understood. He left my bed and immediately started searching for larger hospitals to transfer Will to. The hospital where Luke and Will were born was not equipped to handle these types of situations. Thankfully, he said, we were within 30 miles of 3 hospitals with intensive neonatal intensive care units.

I cannot accurately describe the grief that we felt. The sense of loss and unknowing. The heartbreak over wanting to love these boys, to pick them up and love them to make the world disappear… but being unable to do more than touch their warm, fuzzy bodies.

It seemed like forever and very frustrating, but we finally learned on March 13 that Will and Luke would be transferred to the University of North Carolina. They had two NICU beds come available, though only one was open that day and they would be transferring Will because of the criticality of his situation. Luke would follow on March 14, the day that I would be discharged.

Nate and my dad went with Will to UNC, while my mom and I stayed behind with Luke. It was so hard to be separated. I couldn’t gauge from Nate’s voice on the phone how things were going. I was getting around a little better and spent as much time with Luke as I could. The doctors said he was doing well. He was breathing faster than his CPAP, so they moved him to minimal oxygen support. He had yet to open his eyes. My arms ached to hold him.

My mom wheeled me down to the cafeteria for my first meal outside of my room since the boys were born. The only thing open was a sub shop. I didn’t care what I ate. My mouth tasted like dust. My face was ugly, pink and blotchy and swollen. I didn’t really want to be out of the safety of my room or the hum of Luke’s bedside.

I stood up to place my order, and the attendant looked visibly shocked by my appearance. He made my sandwich quickly, and then handed it to my mom. Then he said “ma’am, I hope that whatever is ailing you, that this sandwich will make it all a little better.” I started crying again.

The morning of March 14 was very busy. Upon waking, we were informed that the ambulance was on its way to transfer Luke the 30 miles to UNC. That meant I was leaving too. I painfully showered. The nurse removed my c-section staples. I packed up my things. I was ready to go… ready to have all 4 of us together again.

The transfer team told me that Luke looked good. He was starting to open his eyes slightly as they transferred him to an incubator on a stretcher. I held his hand. I tried to smile, but it was all still very surreal. They wheeled him away and told us that they would see us in 45 minutes. My mom and I said goodbye to the NICU staff before they wheeled me to the front door of the hospital. I was no longer a patient, I was a mom on a mission. And my mom couldn’t drive fast enough. I wanted to be an UNC to welcome Luke and see my boys.

We arrived at UNC at what seemed like a painfully long drive. My dad and Nate met us in the parking garage with a wheelchair for me. I wanted to walk, but I couldn’t. I was wheeled out of one hospital and into another. Nate’s parents arrived around that same time. I cried when I looked into their faces. They were being so strong.

At UNC, you’re required to get a sticker badge every day before you go into the NICU. I just wanted to see my boys. But rather than heading up to the 4th floor of the Children’s Hospital, I had to stand up and have my pictures taken. I was angry. The photo looked like a mug shot. For the next several years, they kept the same photo on file. Every day we checked into the NICU, any time we were back in the hospital because of shunt malfunctions or g-tube surgery, I had to wear a photo of myself from March 14, 2007… one of the worst days of my life.

We went up to the NICU finally after receiving our badges. I saw Will in a bright and sunny room, with a happy pregnant nurse perched next to him. He looked so small, so many tubes. There was a space in the bay next to him for Luke, but there was no Luke. With the delay with our badges, he definitely should have been there already.

Where was he? I don’t remember how we were told, but someone informed us that Luke had stopped breathing in the ambulance. They had to stop on the side of Interstate 40 and resuscitate him. When the transfer team finally arrived, Luke was on a ventilator and no longer breathing on his own.

The nurses and doctors ushered us out as they went through Luke’s admission process. All of a sudden, all of our parents were gone and Nate and I were walking into a private room to talk. Nate’s eyes were brimming with tears. We hugged for an eternity. This wasn’t what we were expecting. This was not the baptism into parenthood that we had spent the past 29 weeks dreaming of.

Through a heaving chest and shaking hands, Nate told me that the day before… the day he had sounded so distant on the phone, the NICU doctors at UNC told him that they didn’t think that Will was going to live. His brain bleed was one of the most severe they had ever seen. They wanted to know if he wanted to meet with a chaplain. He was just trying to hold it together and be strong for me. I was happy that my dad had been with him when he had gotten that news.

After Luke was admitted and hooked up to all his monitors, an ultrasound was ordered of his brain and internal organs. We learned that he also had a brain hemorrhage, but it was less severe than Will’s. We processed so much devastating news in such a short period of time. Who knew which way was up? Not us. We were just holding on to each other for dear life.

Will was on several medications and blood products to keep him stable and a ventilator to breath for him. Within a day, his bilirubin levels were high and he had to be placed under UV lights. Luke soon followed suit. Repeat ultrasounds were ordered for the boys brains and internal organs, which showed that the brain bleeding had stopped and were no larger than a few days before. They ordered an EEG on Will, which showed that he was not having any seizures. Thank goodness for small miracles.

We left the NICU that evening with heavy hearts. It was the first time that I had been away from one of the boys since they were born. We went to eat at a steak restaurant close to the hospital because I was severely anemic and needed iron. Before we ate, my father in law lead us in prayer and proposed the sweetest toast to our baby boys. But I couldn’t handle it. I wasn’t ready for them to be here with us yet, much less be in their precarious states. I cried. I didn’t feel happy that they were born. I felt scared. Why was this happening?

After dinner, I drove home with my mom. A silent ride. I walked in the door, and again felt so sad. The last time I was there, things were still okay. Things had changed so dramatically in such a short time. Otis greeted us at the door. I sat on the floor to hug him, sobbing. He didn’t know what was going on, and ran away from me. I sat on the floor by myself and cried. I felt alone even though I was surrounded by love.

I took a shower and just cried. I ran our hot water heater cold but it didn’t matter. No amount of heat or steam was going to make this pain go away. No one could give me a direction or a sign or a purpose or a reason.  I prayed to God to bring my sons safely through this dangerous time.  I prayed that He would allow Luke and Will to grow and to thrive, and help them to forgive me and my body for failing to keep them safe.

Nate and I made a pact that night. We agreed that no matter what happened, no matter the news that we were given or the way that we felt or the shortness of each other’s tempers, how we felt was okay. There was no right or wrong way to feel. It just was. We seemed to know at that moment that we were in this for the long haul.

The next three days are a blur. We were quickly indoctrinated into the NICU life. Getting our badge, checking in, washing hands, rushing to be by our boys’ sides. Each day, Nate would stop in to talk to the attending doctor before seeing Luke and Will. I didn’t talk to a doctor until the boys were at least a week old. I had learned in the first couple of days that talking to doctors made me feel sad. They didn’t have much in the way of good news. I didn’t want to fear the next shoe dropping each day. So I bypassed the doctors and went straight in to see the boys. Their nurses were cheery, and positive. I needed that.

We soon learned about the monitors that the boys were on, what each little dinging sound meant and when there was something to be concerned about. We got to know the respiration technicians who monitored the ventilators and the boys’ breathing, and cheered as the boys would keep down 10mL of the breastmilk that I pumped for them. The only thing that I could do for them… I cried when I pumped. It wasn’t how I wanted things to be. I felt as though my body had failed me by birthing my sons 11 weeks early, and that producing ounce after ounce of milk was the consolation prize.

When the boys were one week old, our parents went home. Things were quiet. Sad. We went to the NICU on that Sunday, thinking it would be another day of sitting by bed side, watching the vents breath for the boys, watching PICC lines get flushed, watching the monitors show us respiration and heart rates… always just watching. We ached to hold them, but because they weren’t stable yet and hadn’t opened their eyes, we were just allowed to watch. And change diapers.

But on that Sunday, exactly one week after they were born, when we sat and watched and waited for more of the same, the unexpected happened. Luke’s nurse Lauren asked if we were ready to hold him. His status had been changed to stable. And he was finally starting to open his eyes.

My heart skipped a beat. I was nervous. There were a lot of wires and tubes... and what if I hurt him? Or he stopped breathing? Could I squish him? She chuckled a little bit and told me that is what the monitors were for, and that if I would just sit back in the chair, she would place him securely and safely onto my chest.

All I felt in that moment was peace and the warmth of my first born. For a week I had craved this touch, wanting to smell his head and hold his hand. I snuggled that 3lb 6oz boy as if my life depended on it.

Luke’s breathing soon mimicked my own. His high heart rate and respiration rate monitors stopped beeping. He was at peace too. This is where he wanted to be.

Will’s nurse Jenny sought out the attending physician to see if Will was ready to be held. We were given the ok to hold him too, though he had not yet opened his eyes. He was considered stable. And just as I had been given the instructions to take a seat, Nate pulled up a chair next to me and grinned through tears as Will was placed on his chest.

And there we sat, the family of four we had dreamed about… finally snuggling and loving as it was intended. It was a week later than we would have liked, but certainly better than never at all. In and amongst the tubes and the wires and the vents and the hustle, we finally felt like a family. And Will chose that perfect moment to finally open his eyes.

Monday, May 7, 2012

The Misters Bear

One advantage of going through all of our worldly possessions for the yard sale was that we uncovered some old treasures.  For me, that meant my high school stash of Brady Anderson photos, articles, and baseball cards.  By the size of my stash, I sure loved me some Brady - what teenage female Orioles fan of the mid-90s didn't?

For Nate, his stash of treasures included his old Paddington bear.  Paddington doesn't really look like Paddington anymore.  His top hat and tails are many years gone.  His matted fur shows off his many years as a trusted sidekick and confidante.  I am sure being stuck in a trunk in our attic for the past 9 years hasn't done anything to return the luster of his youth.

When Nate freed Paddington from his confines, he smiled like he had found an old friend.  His next move was to proudly show Paddington to Luke.  Luke has a teddy bear that he loves - the appropriately dubbed "Mister Bear" who has a much more comfortable residence on Luke's bed.  And accompanies Luke to sleep every night.  Mister Bear doesn't seem to mind the strangle hold and sweaty head of his best bud.

Nate was so excited to show Luke his bear.  Luke immediately went to find Mister Bear so the two bears could have an appropriate introduction.  The two oldest Slavik boys and their best bears had a good time hanging out on the couch. 

Once the introductions were over, we moved on to other things.  Paddington Bear hasn't been banished back to Nate's trunk of memories, though.  When Nate wasn't looking, Luke swooped in and saved his Daddy's best bear.  I think he's going to love that bear just like Nate did.  More hugs, more snuggles, several more years of being best buds ahead.  Paddington now sits proudly on the corner of Luke's bed, right next to Mister Bear.  Luke's pretty excited to share Daddy's Paddington.  And I think that couldn't make Nate any happier.

And on a totally different note, congratulations to Jaerid and Kirstin and their Tough Mudder team! Everyone on the team finished the tough obstacle course and earned their orange headband. One member of their team actually separated his shoulder during part of the race but powered through it and still managed to finish. Unbelievable. Tough folks! And great friends. We are so very grateful for your friendship and dedication to Will!

Thursday, May 3, 2012

Toughest Mudders

Back in January, I let you know about our friends Jaerid and Kirstin, who are competing in the Tough Mudder at Mt. Snow, Vermont.  It is hard to believe it, but the weekend of the Tough Mudder is upon us!  Jaerid and Kirstin, as well as the team of Will's Warriors that they have assembled, have been training furiously for months.

I am not sure how you train for an event such as the Tough Mudder.  It isn't like training like a marathon.  Take a look at the ridiculous map of the event at Mt. Snow.  How do you train for such *fun* sounding obstacles as the Death March, Mud Mile, Underwater Tunnels, Fire Walker, Kiss of Mud, and my personal favorite, the Arctic Enema?

Will's Warriors are up for the challenge.  They're an amazingly tough, determined, and a little crazy group of kind hearted, giving individuals.  Please think of them at 8am on Sunday May 6.  As you're enjoying your morning coffee and reading the box scores from Saturday night's baseball game, they're going to be up to their armpits in sweat and mud... busting their chops for our little tough guy.

It still amazes me that they are using Will as their inspiration, and that they're so kind as to raise money for him!  There are some exceptional people out there.  There is still time to donate, if you feel so inclined.  Check out the donation website here.  Thanks so much to everyone who has donated.  We're blown away by your generosity.

Good luck, Jaerid, Kirstin and the rest of the Will's Warriors team!  You guys are awesome.  We're so lucky to have you as friends.  You're in for a tough obstacle course on Sunday, but we'll be rooting for you from North Carolina.  Snag us a couple of orange headbands, ok?

Wednesday, May 2, 2012


We has expected to get some news from Hopkins today about the results of Will's EMU stay.  Unfortunately, though, the conference group didn't meet last week.  So now there is a backlog of patients to discuss, and Will was bumped to next week's conference.  And so we continue to wait... this is kind of a bummer for right now. We were definitely geared up to get some news late yesterday or today.

In the mean time, we are all still in a bit of recovery.  Except Will.  Will has bounced back from his EMU stay with amazing day time vigor and night time sleepiness.  He has been having a great time, it is nice to see!  Will seems to be enjoying school more, is more tolerant of some situations that he previously did not like, and has just been in a good mood all around.  I don't know if it is because he was cooped up in a hospital room for 9 days and now understands how good life is, or what!  Whatever it is, we'll take it!

Luke and Matt have both gotten a bit of a virus.  They have coughs and slight fevers.  Neither has been in a great mood.  Matt is also breaking in two-year molars, so that doesn't help his situation at all.  We're hoping that they turn the corner soon.  They both seem to have moved beyond our familial separation, and are doing well in school.  Luke is counting down the days until he starts kindergarten.

Nate and I are still exhausted.  There's really just no other way to describe it.  I wish it was a different story than my post this past Sunday... but the situation hasn't really improved!  Between household chores, spending time with the boys, eating dinner together, walking Otis, doing laundry, updating blog posts, and the Rangers being in the playoffs, we haven't really gotten the sleep that our bodies need to actually go into recovery mode.  I won't even share with you just how gross the house is... let's just say we're about to lose Otis in a dust bunny made up entirely of his own shed hair.  I used to be proud when people would come over and say "you're house is so clean!"  And now... now I just can't find the time or energy to lift a broom. 

Tonight I downloaded all of Will's pictures from Johns Hopkins from the little camera to our computer.  I also found a couple of old shots that I know I once intended to use for a blog post called "Incognito."  Maybe that, or "Tom Selleck is my hero."

Either way, here are some of the photos.  Thanks Leah G. for the moustaches!  Will wouldn't have any part of it.