Anders + End of summer

August is right around the corner.  In the past, this has meant one thing to me: the impending start of the  school year.  This was came with mixed emotions: I was always excited for cross country during high school and college (which now translates to fall racing season), but a little sad that the freedom of summer was coming to a close.  These days, it marks something else: Anders' birthday.  As we get ready to celebrate his second year of life, I am taken back to both the hardships and, more importantly, the celebrations.

Look at how far we've come!

As I got out of bed this morning, it hit me that our life is almost "normal" (though the definition of normal is, of course, debatable).  We no longer have the weight of oxygen, and thanks to our wonderful therapists at Monroe-Meyer, Anders' eating abilities have improved ten-fold.  Anders is happy and healthy.  He is extremely active and social, and already has crazy basketball skills.  Anders was enrolled in gymnastics this summer, and while he did improve as the sessions went on, he spent the majority of time, however, trying to figure out how to get his basketball into the massively high hoops in the gym.  That's right--the only way Anders would participate is if he was allowed to carry and chase a basketball around as a reward for trying or completing a new apparatus.  Unfortunately for Anders, I do not believe that there is basketball for toddlers.  He'll be enrolled in dance lessons this fall.

Anders is also able to go to day care now with his peers.  After staying home for the first two years of his life, Anders spent three days last week with his brother while I attended the Women Run Nebraska Running Retreat and subbed for the summer school program at the Cen7ter.  Quinn actually had a harder time being dropped off than Anders.

Anders continues to attend follow up appointments with pulmonology and GI, but these seem much less stressful and are few and far between.  Remember way back when we thought Anders would have to get eye surgery because of the large amounts of oxygen he was receiving? Well, Anders was seen by a pediatric vision specialist in Omaha and earned a favorable report; he would not have to be checked again for three years.  He also gained a good report from the NICU follow-up clinic at St. E's--developmentally, he is on track for his corrected age.  We continue to work through Anders' feeding disorder through weekly sessions with Monroe-Meyer, but Anders no longer exhibits aversions and is now drinking from a sippy cup.  He does well with blended foods, but struggles with anything that requires biting and chewing (this doesn't stop him from trying).

This summer has been a busy one--in addition to Anders' appointments, Quinn was busy with swimming lessons, dance, and gymnastics.  They went to the pool, children's museum, and zoos.  They tagged along with mom at Jazzercise and helped with shopping and baking (Quinn more so than Anders).  I've also been squeezing in Ironman training.  WRN continues to thrive and we successfully put on our first summer retreat this summer.  Philip has been able to spend time doing what he enjoys--working at the cabin with the tractor, spending time outside, and of course working and traveling for Sandhills Publishing.

So, here we are looking down the barrel at August.  We leave for Colorado next week, and the following week I'll begin my fourth year at the Cen7ter teaching Life Skills to students with developmental disabilities.  I absolutely love my job and look forward to seeing my co-workers and students on a regular basis. I will be taking two courses through the University of Nebraska-Kearney to add my administrative endorsement.

I'm sure things will slow down this fall... ;)

Coping with loss.

The first time I remember feeling a hard loss I was maybe 10 years old.  My mom had accidentally run over my cat and he unfortunately didn't make it.  I physically hurt from the pain and couldn't stop my tears from flowing.  Maybe that is the thing about pets...their deaths help us how to learn how to cope with unthinkable losses later in life. 

The early birth of Anders has opened my heart to hurt that I didn't know possible.  In those early weeks, I would lie in bed sobbing as my husband struggled to comfort me.  Although our son was alive, my heart has never hurt worse than it did at that time.  As time passed, Philip and I wanted to tuck the hardships of the past year in the back of our memory.  We decided that it was the right time for another child.  This time, we would have the perfect pregnancy.  We would welcome a healthy baby into our family full term.  We would snuggle with a cordless baby who was able to breast and bottle feed. No occupational therapy.  No physical therapy.  No specialists.  No calls in the middle of the night informing us that our 1 pound baby needed another blood transfusion.

We ended up getting pregnant last October.  Because I had had two premature babies, I was referred to a specialist in Lincoln.  They started seeing me every other week to make sure that things were progressing as they should.  And they were...like I said, I was so determined for my body to be normal.  I got to see my baby each time I went as they always did ultrasounds.  It was so magical watching my child grow from a tiny little pea to a little person.

I got really sick at the beginning of December.  When the bleeding started, I knew that it was just a matter of time.

On Christmas eve, I learned that I had miscarried.  We ended up getting a D&C procedure scheduled for that same day by one of the nicest doctors I have ever met. (I mean, really, who wants to work late on Christmas?!)  Philip and I spent Christmas in the hospital mourning the loss of our baby when the pregnancy ended at 14 weeks.

I cannot say that I coped well with the loss.  I spent the next several months stuck in a fog.

Although I am still sad as we get closer to what would have been our due date (June 22), I am doing okay.  Quinn warms my heart each and every day with the cute and funny things that he says.  His impeccable memory is so impressing...he is able to recall detailed events from nearly a year ago! And Anders...I do not have words for how amazing it has been to watch his progress every day at Monroe-Meyer. Plus he is just so darn happy!

The loss of a pregnancy is always unspeakably hard, but here the thing: I have two beautiful boys whom I love dearly.  I know exactly what I lost on December 24th.

To all the women (and men) who have suffered a miscarriage:  I know how broken your hearts are.

And to all the parents out there: I know how full your hearts are.

This is real life.  There is loss.  But the love is so big.

Monroe-Meyer: One week down

We have been gearing up for the Monroe-Meyer Institute (MMI) since this past November.  It took forever to get everything okayed by insurance, and then we were further stalled by some testing to determine if Anders needed another fundoplication.  However, after consulting with our pulmonologist after Anders' impendence probe, we decided that it was time to start the intensive feeding program.  This meant that Anders would need to attend therapy sessions Monday through Friday from 9-5 for eight weeks in Omaha...which was going to be quite the challenge beings we live in Seward. I work in Columbus.  And Philip works in Lincoln.  However, the longer we waited, the further behind Anders would get.  We had learned from our therapists that Anders could possibly fall behind with his vocalization skills since he hasn't been taking much in orally.  (Isn't it crazy how everything is tied together?!)  So after conversing with my family, we decided we could make it work out. 

Anders' new home base is now with my sister and her husband in Omaha.  We are alternating who will be staying with Anders during the sessions and who is caring for him during the evenings.  Everyone involved in Anders direct care has spent time at Monroe-Meyer and has met Anders new therapists.  His day includes five sessions alternating between solids and liquids.  The are just finishing acquiring the baseline data and have started treatment.  As we knew what to expect after talking to many different people, we have transitioned rather well into our new routine.  We are planning on dropping Anders off on Sunday evenings at my sister's, they will take him in Monday and Tuesdays, and my mom will take Wednesdays.  When I'm done with work on Wednesdays, I will head to Omaha and take Anders to therapy on Thursday and Friday.  Quinn will be attending daycare in Seward and Philip is planning on keeping everything together there.  Total team effort.

So how is everything going after we have completed one week?  Pretty good. I am incredibly impressed with the therapists who are working with Anders.  They are caring and compassionate and work incredibly hard.  They have done an awesome job communicating with both Philip and myself when we have not personally been there during sessions.  In addition, I took Anders to a pulmonology appointment on Wednesday and had a great meeting with his lung doctor.  (We love him, by the way.  He has gone out of his way on numerous occasions to make sure that Anders is receiving the care that he needs.)  All in all--I feel that we have a great team working together for Team Anders.

Of course there are struggles and hardships that go along with all of this...I have not gotten to see Quinn much this week which absolutely breaks my heart.  I know that he is receiving good care, but it does not feel good to be in a different town than him.  I am also missing my husband.  It seems like we have been apart most of this week.

But I'm feeling incredibly hopeful for our future.  Anders is doing SO well.  He is on track physically and developmentally.  He has started saying new words.  He is incredibly social, happy, and loves interacting with others.  I have also noticed while observing therapy sessions that he is becoming very animated with his expressions.

Plus, I know, just KNOW that things will continue to get better for Anders. 

And just to throw in one running tidbit--I am feeling much better physically as of late.  I have decided not to focus on my speed for the remainder of the spring, but rather using running as a way to balance all of the craziness in my life right now.  I have now run at least one mile for 41 consecutive days. 

With no plans on stopping.

Here's to a  hopefully successful eight weeks at Monroe-Meyer.  And a big thanks to our family for making this possible for Anders.

Running as a Spectator Sport

So, yesterday was the State Farm run in Lincoln.  I have done this race annually for many years and really like it.  The 10 mile event is great to gauge your fitness for the Lincoln half...the race is run on the Mopac trail and is fairly protected from wind.  There are water stops, athletes to run with, and people cheering.  The 5k is flat and fast.  (Plus most of the really fast people run the 10 mile--probably the reason I was able to win a couple years ago.) Philip was signed up for the 10 miler and I had registered for the 5k.  As of Friday night, I still wasn't sure if I was going to run it...I'm still not where I'd like to be and not sure if I can mentally handle another train wreck of a race. 

Between the facts that our babysitter cancelled last minute (though a friend did say he'd watch the boys for the twenty-something minutes that it would take me to run) and that Quinn was being an absolute bear that morning, I bowed out.  The new plan was to cheer Philip on.  As we had 14 miles on the docket for our half training, Philip planned on running two miles beforehand and two miles after the race.  We loaded the boys up in the stroller and off Philip went.

 After picking up packets, I pushed the boys around for awhile and tried to keep Quinn happy.  We cheered loudly for the WRN ladies competing and for Philip, and meandered around long enough to watch the 5k start and finish.  (And, just an FYI, there were several fast ladies who would have kicked my butt.  It's probably okay that I didn't race.)  At this point, it became very clear that it was going to be difficult for me to keep Quinn entertained while Philip still had well over an hour on the course, plus his extra two miles.  I ran the boys back to the truck and frantically tried to load up Quinn while Anders toddled off.  We made our way to Hy-Vee (I really needed some delicious deli meat) where I made the mistake of sticking my boys in one of those car carts.  I'm not sure if you've ever driven one of those, but they are REALLY hard to steer.  I mean really hard. I accidentally rammed that thing into an Easter display by the flower shop.  After my small wreck, Anders started grabbing

for the breakables, and I must have looked flustered enough that an employee came to assist me.  He pulled the car away from the display and told me that maybe the double decker car cart would be a better choice next time (apparently it's easier to steer).  Off we barreled to the deli department.  After getting one pound of choice turkey and half a pound of sharp cheddar, we headed off to the dairy section with two gigantic pieces of sample cheese, one for each of my boys.  Since Anders can't eat it, there is Quinn stuffing tons of cheese in his mouth.  Whatever.  JUST.NEED.SOME.MILK.  Two gallons of milk later, we belted to the front of the store.  We had a finish line to get to!  I stuck Quinn in his car seat first (he runs away faster than Anders), and then buckled my second child.  As I was stuff the groceries into the truck, a family came up to me asking if I was done with that darn cart.  Yes, for goodness sake!!!! Take that thing away!  (And, just a side note, my husband's truck is BIG.  I can't zip around as fast as my car.)

I was getting really nervous that we were going to miss Philip at the finish line.  How horrible would that be?! 10 miles is pretty far, and I know what it's like to look forward to seeing your family at the finish line waiting and cheering you on for those final steps.  I didn't even bother lugging that stroller back out.  I hoisted Anders out and held on tight to Quinn's hood so he couldn't get away from me. (This, by the way, made him even more cantankerous than he already was.)  We saw Philip's childhood pastor, who informed us that we should be safe "judging by the people who were currently finishing".  I hauled my children up the hill and we waited as patiently as you can with two toddlers for daddy to finish.  When he came up the hill, we screamed excitedly and then headed to the finish line.  And we literally stood right at the finish.  So Philip would have no choice but to take one of these two children.  Philip scooped Anders up and gave him a big hug at the same time I accidentally let go of Quinn's hood.  Off he went.  Philip told me he had to get the final two miles in, so off I went to find Quinn amongst the crowds with Anders on my hip.  (I was starting to regret not running the 10 mile myself.)

I was so exhausted from that race. And.I.didn't.run.  

My next task upon getting home was to hop on the treadmill to get my 14 miler in.

Isn't being a runner a great thing?! :)

Life Lately

This spring has been quite different than the last.

Last year, I was home with a very busy two year old and very sick infant.  It was a very difficult and sad time, but I was able to channel all of my frustrations and problems into my running.  And it was a good place to funnel it all--I was able to shatter what I thought my limitations were and was able to look in the mirror and see someone who appeared to have it all together.

As I look both forward and behind me, I see a much different time.  I was able to go back to work this year teaching special education in Columbus.  I am still taking Anders (and occasionally Quinn) to numerous doctors and specialists, but the appointments do not seem as desperate.

And I continue to train.

My weirdo issues have continued after the Leprechaun Chase even though I scaled things way back.  I have been taking my miles easy and not hammering on my bike as much.  But here is what happens--if I run too hard or too far, I start to lose control of my legs (more noticeably in my right quad).  It starts to almost "flap" and I literally cannot go any faster or farther.  Last week, this happened between miles 7 and 8 of my 12 miler.  I got off the treadmill, drank some gatorade and stretched, and resumed my run successfully at a slower pace.  My midweek runs went better as I slowed to 8mph instead of 8.5-9.5.  However, it occurred again today around mile 6 of a 7 miler with my husband.  I don't think our pace was blazing, but we were alternating miles pushing the boys in the stroller which is substantially harder.  So I'm not sure what this is--lacking in iron? something weird with sugar processing?

But the reality is this: this is not in my mind and this isn't going to be a quick fix.  There are no PRs in my near future and it doesn't look like I'll be achieving anything big in the racing world.  Am I sad or disappointed?? Here is the strange part...I am mostly okay with this.  I love running and I am thankful that I'm able to do it, no matter how fast or slow I am.  The hardest part is that I don't want to let my WRN teammates down by not being able to strongly represent our team.

I will continue running, teaching, and taking care of my kids.  I'm going to continue loving ever minute I spend with my husband, being with friends and family, and reading good books.  I will be breaking barriers in my running this year in a different form--figuring out what is wrong with me and continuing to work through this by making necessary adjustments. And maybe I'll get this nipped in the bud and be back.

I hope that training has been going well for you and that you're enjoying the beautiful weather.  And PS--WRN is hosting a very cool running retreat this summer.  Check it out here.

Happy running, friends!

Anders' GI Update

Okay.  So, for the past month and a half, we've been trying to get Anders an evaluation at the Monroe-Meyer Pediatric Feeding Clinic.  After meeting with his new GI doctor in October, we began the process.  It initially began by filling out a gigantic stack of papers...20+ pages to be exact.  It included every procedure, every appointment, medications, our current feeding schedule, etc.  In addition, we also included all of the documentation that his therapists have been conducting over the past year.  A month after we mailed all of that, we had yet to hear anything, so Philip called.  They claimed that they had not received the paperwork and that we'd have to fill it out once again.  My heart had sunk into my chest with this news...that paperwork had taken me FOREVER to fill out.  After thinking about it, I decided that it had to be in their facility somewhere.  I mean, I had a return address on it and hadn't gotten anything returned, so this had to be right.  Philip called again and asked them to look one more time, and miraculously, it was found.  Though we encountered some issues getting Boys Town to fax over their records (not the first time this has been an issue with them), we were able to schedule his evaluation for this morning.

As I didn't have to work, the date worked out well.  Quinn went to his old daycare for the day, and off Anders and I went.  Upon arriving at the Monroe-Meyer facility (on the UNMC campus), I immediately begun to feel overwhelmed.  I was told to park on the south side of the building, but as the road to get there was closed, I couldn't get there.  I ended up parking on the opposite side (in a potentially illegal spot) and wandered through hallways with no idea where I was going.  When we found the patient check in area, I told them Anders' basic information and waited to be called back.  I was very apprehensive as this was a new place and wasn't sure what to expect.  After talking to one of the therapists, Anders and I were led to a very small room with a high chair and a table.  It had one of those mirrors that they have in police stations where they can see you, but you can't see them.  I was instructed to feed Anders several different things at varying amounts.  In between, they'd come ask questions and give new instructions.  After this (I think it lasted around an hour), I met with a GI doctor to go over Anders' records and surgical history.  He verified that the fundo was not working and that our problems with Anders were both behavioral (refusing to eat) and physical (not being able to keep food in).  Although I felt close to tears after the feeding session and during the meeting, I held it all together.  We then met with a dietician who weighed and measured Anders.  After this, I met with one of the Ph.D's who oversaw the program.  She told me that Anders would need to attend the 8-week intensive therapy program (or longer if the kids would benefit from extra time).  The program meets Monday-Friday in Omaha from 9am-5pm.  After he finishes the program, he will need to attend weekly therapy sessions for 2-4 years.

Although my family and I knew this was a very good possibility, the news hit me like a ton of bricks.  We live an hour and a half from Omaha.  Philip and I both have jobs.  And what about Quinn?

As I got Anders loaded up in the car and begun the trip home, I started to cry.  How much more can I take?  The past 16 months have contained so much heartbreak.  Our youngest child has had to suffer so much.  So has Quinn.  And Philip and I...the depths of our sadness is not measurable.

I will get myself back to the point of being thankful for the tremendous number of blessings in my life.  But today I am feeling very sad.  I hope that is okay.  The intention of my posts is never to complain or make people feel sorry for us.  It just helps to get this all out.

Anders lately

I have been meaning to write a post about what is going on with Anders lately, so here it is! Anders is now almost 15 months old...I almost just typed, "Can you believe it?!"...but, yes, I can.  It has, and continues to be, a very long road.  Our struggles are still numerous.  

To start, Anders is still on oxygen. His last appointment was at the end of September, and at this point, his average oxygen saturation levels were at 95% over a 24 hour period.  This is good, but I guess not good enough.  He would have times when he would be satting 99%, and then suddenly drop to 91%, so no dice getting off the O2.  His next appointment is at the end of November.  I don't know if we are planning on doing another overnight oxygen test or what.  IF we do, and IF that goes well, he will will have to do another overnight sleep study at the hospital to make sure he is 100% ready to be done.  At this point, I have just accepted that he will be on oxygen indefinitely.  After being home for nearly a year and not being able to go off, it is mostly just part of our world.

Ander is still 100% dependent on his g-tube (feeding tube).  He has been undergoing occupational therapy for some time now (to help him learn how to and want to eat), but we have not had too much success.  Because of the CHI stuff, we had to switch to a new GI doctor, whom he met with a couple weeks ago.  This doctor suggested to us that we do two things: an integrity test to see if the surgery was successful (Anders has started throwing up his food again), and a referral to the Monroe-Meyer Feeding program in Omaha.  So, we are moving forward with both.  Anders completed the integrity test this past Thursday at Children's Hospital.  Basically, they put 5 or 6 ounces of barium (a liquid that they can see with the x-ray machine) through Anders' g-tube and then watched to see what would happen.  Anders immediately threw this up--proving the theory that they surgery he had received in June had failed.  I'm not totally sure about this, but I remember doctors telling me that the fundoplication could not be un-done or re-done...it was a permanent surgery.  It had a 90% success rate.  So here we are yet again having bad luck with percentages. (Seriously--how many children are born at 24 weeks?)

About Monroe-Meyer.  Here is what I found out: that the program Anders will most likely need is a 8 week program.  9-5.  There is no way, NO WAY, that I can take that much work off AGAIN, so if Anders ends up going this route, we are going to have a sit down meeting w/ my family and see if we can divide it up amongst everyone so no one will be gone much from work.  Plus, my parents are retired and have offered to help.  (They have stepped up and helped us SO MANY countless times.)  However, after finding out that the surgery failed, I'm not sure this is the right thing for Anders.  IF they do convince him to eat, he will just throw it all up anyway, and our cycle of not wanting to eat because he doesn't want to throw up will continue.

Maybe this sounds really bad to you.  Maybe you are wondering why this is so heartbreaking for me. ("Addie is SO dramatic!")  I mean, yes, for sure, things could be worse. A few of you know about some of our other struggles these last few years, but it's definitely been a tough go at times.

There are positives though.  (Why is it always so easy to focus on the negatives?)  Anders is crawling like crazy.  He can pull himself up.  He is incredibly social and has the sweetest personality ever.  He rarely fusses, even though he is teething.  He sleeps like a champ...he naps easily and sleeps each night from 7:30pm-8ish-am.  And we have such a blessing in our son, Quinn.  And I am seriously (SERIOUSLY) married to the most amazing man I've ever met.  (Even though he's a little weird sometimes.) My husband sent me this after learning that our road would continue: 

Addie – thank you for your strong heart, for stepping up to the plate for our family while never knowing what direction the pitch is even coming from.  (watched that baseball game last night)  You are loved, and the example of love that you have set forth in our home has been one of the many spots for us to lean on in our seemingly endless number of trying times.  I wish I had the answers, and that I knew what direction we were headed, it’s my job to protect this family and lead us in the right direction and not knowing is so very hard, for everyone.  This journey that we are on is the path that was set up for us, where we are to do HIS work, we have a big job to get done and that is what we’re going to do.

 I can’t thank you enough for being the #1 in all of this; I know it’s hard, but please know that I love you and appreciate everything that you do for brother and for our family so very much, and know that we have both grown in this marriage  because of the tougher times that we have been through, we can do this, I know we will get through this, this is not the end.  You can lean on me and I will lean on you and we’ll both lean on Quinn and Anders, they are the constant smiles and source of innocence in all of this and will have a spectrum of emotions/feelings that few will be able to equal.

Most of all, we will always follow and trust that we are in the Lord’s hands, and like you always say, this is such a short time here on earth for us, we’re meant to live w/ Him in paradise, and if things were always perfect here there would be no need for Paradise!  J


 For whatever reason I screen grabbed this from Matt last night -  -
 Do Not Worry  - Matthew 6: 25-34
 25 “Therefore I say to you, do not worry about your life, what you will eat or what you will drink; nor about your body, what you will put on. Is not life more than food and the body more than clothing? 26 Look at the birds of the air, for they neither sow nor reap nor gather into barns; yet your heavenly Father feeds them. Are you not of more value than they? 27 Which of you by worrying can add one cubit to his stature?
28 “So why do you worry about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin; 29 and yet I say to you that even Solomon in all his glory was not arrayed like one of these. 30 Now if God so clothes the grass of the field, which today is, and tomorrow is thrown into the oven, will He not much more clothe you, O you of little faith?
 31 “Therefore do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For after all these things the Gentiles seek. For your heavenly Father knows that you need all these things. 33 But seek first the kingdom of God and His righteousness, and all these things shall be added to you. 34 Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.


 We have much to be thankful for and to focus on in tougher times – to name a few – a wonderful marriage, the ability to have babies, a warm bed, food to eat, wonderful family members, wonderful friends, a great community, athletic ability, WRN, and on and on ….

 Love you babe – always and forever no matter what we’re served up, we’ll take it down together one step at a time, hand in hand always!

Philip

 Ps – I called and am picking up the meds tonight

I'll end on this--I know that all of us have battles to fight through in this life, and this is ours.  We just need to trust, try our hardest each day, and be thankful. And try to get some running in. :)

one year later.

On the day of Anders' first birthday, I received an email from my husband that said,

Happy Birthday Brother!! 

Wow, what a year. 

Sort of an emotional day if you stop and think too hard on it…   wow. 

So many blessing to count and be thankful for, love you and wouldn’t want to be in the fox hole w/ anyone else but you!

LY

It is really hard to look back on August 19, 2013, but it is so important to remember where all of this started and how far we have, in fact, come.

  

July.

All of our troubles began last July.  I was 21 weeks pregnant and we have just learned that we were having a second boy(!!).  Up until this point, my pregnancy had been a healthy and easy one.  However,  I was admitted to the emergency room twice towards the end of that month as I was severely bleeding.  Twice, I was sent home after being told something about an "angry cervix".  My problems continued, and although I was going to the doctor frequently, I was told each time that I was fine, the baby was fine, and that I was overreacting.   In hindsight, I should have went to a specialist, but at the time I was trusting in what the doctors were telling me.

Sunday, August 18th. 

I had been experiencing contractions for the last 4 days, having last been to the doctor that Friday.  I was told I was having braxton-hicks. (Though, after researching this, I learned that these do not happen at 24 weeks.)  I woke up that morning to my water breaking.  This happened with Quinn at 36 weeks, so I knew what it meant.  I remember telling Philip, "This is really, really bad."  My parents were down that weekend, so as I quickly gathered a couple things, Philip woke them up and told them what had happened.  We, once again, went to Seward's emergency room knowing full well they wouldn't keep me there.  This part was so scary.  The two nurses who were taking care of me were very nervous and one told me, "You are too early...you are too early..."  Her desperate words deepened my sense of dread.  The called an ambulance for me, but it ended up taking quite awhile...we learned later that they were half-way to Seward before the St. E's NICU heard that they were picking up a mother who was in labor with a 24 weeker...they had them turn around, come back, and pick up some specialists so that they'd be prepared if I delivered en route to Lincoln.  About five people from the ambulance burst into our room and immediately took over.  It was then that I felt the teensiest bit of relief.  Finally, people who seemed confident!  They loaded me up and off I went.  (Philip was unable to ride with me.)  Upon arriving at St. E's, I received doses of medicine to speed up my baby's lung development should he be born early.  I also learned that I wouldn't necessarily have to have my baby immediately. (This was news to me--I didn't know you didn't have to have the baby once the water broke.)  So, our plan was for me to live in the hospital for (hopefully) the next several weeks.  The were hoping that I'd make it to 30 weeks or so before we'd deliver.  With this as our new plan, things calmed down a little.  Hope was not lost.

Monday, August 19th.

Philip had went to work, but once he got there, he was told that he could leave and join me at the hospital.  (I think he got there late morning?) My mom had stayed with me while my dad was back in Columbus with Quinn.  Shelly had come to visit with lots of crossword puzzles, nail polish, and things to keep me busy.  My sister had brought me lots of movies and books.  I was all set to live in the hospital.  Anyway, after Philip hung out with me for several hours, we decided that he was going to run home to shower and pack. (He was going to stay overnights at the hospital for a few days until things settled down.)  In that time, the doctor monitoring me became increasingly concerned about our baby's heart rate.  I guess it had dropped too low for quite awhile.  The nurse came in and asked when my husband was going to be back, because the doctor wanted to talk to us now.  We told her that he was home so maybe could we wait a little bit?  The doctor came in (it was 5:00pm) and basically said it was go time.  NO warning whatsoever for me.  One minute I thought I was living in the hospital indefinately and the next minute, I was having my baby 4 months too early.  Freaking out, I told my mom that I only wanted to talk about books.  Pat Conroy it is.  (I love the 'Prince of Tides'. And 'Beach Music'. FYI.) 

Upon our arrival to the OR, I was told that I would be getting an emergency C-section, and although I would be receiving a pain killer, I could not get any meds that would affect the baby in any way--he needed to be as "vibrant" as possible to increase his chances of survival.  I was assured that the process would move quickly, and that I might feel them cutting the baby out...BUT the second the baby was out, I would be given very strong pain killers.  While I felt the cutting, the pulling/moving of organs, I didn't feel any pain.  When the baby was out, he let out a cry (!), which was a good sign.  The brought him around so I could see him, and then off they all went.  I did not see him again for several hours.

Philip got to St. E's as quickly as he could, but missed the delivery.  He arrived right as they were taking our baby away, so he also got a quick glance at our 1 pound, 9 ounce baby.  The rest of that night was incredibly blurry to me as I had lots of pain killers running through my body...I'm also guessing that I was a little in shock.  Our pastor came to see us that night, and performed a baptism for our tiny son.  I didn't know it at the time, but Anders' was given a 50% shot at life.  (I made a point to google NOTHING about the survival rates/long-term problems, etc. for MONTHS. I didn't want to know.)

And so began Anders' life.

anders stuff + hard workouts

There is such a strength that can be gained from being positive.  And while I might not be the most positive person, I at least consider myself a realist.  It seemed realistic to me that when we brought Anders home in November, things would be "normal" right now.  That Anders would be off oxygen and growing like a weed.  That we could tuck the last several months away and it would slowly become ancient history; a book of the past that we could either choose to open or keep closed.

It's June.  Anders is still on oxygen and it doesn't look like we'll be done anytime soon.  Anders' reflux issues have gotten so bad that he nearly throws up everything he eats.  He lost a pound between April and May.  After trying many different things (the scope procedure a couple weeks ago and an upper and lower GI), plus a plethora of medications, we are meeting with a surgeon on Thursday to schedule his fundo (basically wrapping his sphincter muscle so it will hold his food in).  After that, he should be bound for his first surgery in a few weeks.  I am constantly administering medications that taste bad, ordering new ones, making sure we have enough tape to keep his cannula one his face, and in constant communication with our doctors at Boys Town, Children's, Complete Children's Health, and St. E's.

When we brought him home, I was so confident that our issues would be behind us by now that I am feeling lost right now.  My heart and entire body ache with the pain of carrying this weight.

So, the question that I have been struggling with is, "What now?!"  I could try to go back to getting through one day at a time I suppose.  But even that sounds daunting. My parents and husband have been great, but how do I help myself to maintain a positive attitude and a belief that one day, Anders will have made it through all of his issues?  I have spent the last six months throwing myself into my running harder that I ever have...and honestly, I have been struggling with whether this has been selfish.  One of my friends explained this to me: "Addie, things are so out of control with Anders and his health...running and training is something you CAN control."  This makes sense to me...when you world is spiraling out of orbit, you need to have something to grasp to, and running has given that to me.

Which is why I have packed the summer and fall with very difficult training and racing.  Last week, I think I completed 11 workouts.  One being a long run (marathon training), one being a speed workout, and one being a brick.  I went to the track last week and ran 4x1000 (2.5 laps around the track) and two 400's.  I finished my first 1k in 3:32...granted, I have not run 1k's in a very long time, but when I used to run them in college, I think I would come in around 3:45.  I hit my 400s in 1:19.  I have run many 400 repeats, and usually averaged between 1:25/1:30.  Last Friday, Philip and I completed our second brick as we train for the half iron in August.  We biked 30 miles on highway 15, hopped off our bikes, and ran 5 miles immediately after, maintaining a sub-8 pace on the run.

I know that many of you understand that this continues to be a difficult journey for our family.  Thank you for your continued love and support.  Here's to hoping for good things to come this summer and fall!

Happy running!

Facebook life (what you see) vs. Reality

It's been a tough day.  Well tough week.  Who am I kidding?! We've been having a tough time since August.

I have always used Facebook as a way to share pictures of my sons and basically "happy" things that are going on in our lives.  Yes, this has been an incredibly trying time in our lives, but I don't really believe social media is the place to broadcast our challenges.  With that being said, I have painted an unrealistically cheery profile that is not always a clear picture of our reality.

I was initially discharged from the hospital after my C-section when Anders was born on a Friday.  (Anders was born five days prior.)  Philip and I went together to visit him on Saturday and Sunday, and Monday was the first time that I went to see him by myself.  In addition to healing from my own surgery, I was scared to death to go for the first time alone.  I must have parked on a line in the parking lot, because when I got back to my car, I had a very nasty note that said, "LEARN HOW TO PARK, A^&*$%&!!!!!!"  Now, I'm guessing that this guy was having a rough day, too...why else would you take the time to write someone a mean note like that?!  Once again, though, I was reminded not to judge by outward appearances.  Yes, that Buick was happily (or haphazardly) just sitting there, but the owner was crying her eyes out staring at a baby that may or may not live.

Last week alone, we shuffled Anders to five different appointments.  I thought that he'd only have two this week, but as of today (Wednesday), three more have been added.  My heart and mind are so very frustrated by how difficult it is for every agency involved to communicate and make the best decisions. Many times, I am the link between everyone which is not a place I like to be.  I have no medical training and no medical knowledge.  And because I took the year off from working, this is MY job and contribution to our family.  However, that fact does not make it easy.  I am sad, mad, confused, and exhausted.  Running has become the most positive way for me to funnel all these negative emotions.

I talked to our doctor over her lunch.  She has been doing a fabulous job of trying to keep everyone communicating and then filling me in.  Today we talked about the best approaches to determining exactly what is happening with Anders reflux and if his lungs are continuing to get injured when he aspirates (sucks milk back into his lungs).  I called Philip when I got off the phone with her...he says all the right things. "You're doing the best you can."  "This is all a part of God's Plan."  "There are so many wonderful things in our lives."  All of these things are totally true.   I am doing the best I can.  I know this is part of God's Plan.  I know better than anyone that a horrible event can produce something beautiful in the end.  And yes, there are so many wonderful things that we have to be thankful for.  BUT there is still a lot of hurting and a lot of pain, and at times, seeing the good stuff is really hard for me.   But I still sat there with tears running down my face...this time silent ones.  (It's a good thing I like to put salt on my food...otherwise I might have to start taking those sodium replacement pills that the triathletes take!)

Throughout these past seven months, Philip and I have been blown away by fabulous, caring, and thoughtful people.  The amount of love that we were shown was incredible.  Lately, I have felt a little sad by a couple of my friends saying hurtful things regarding my recent successes in running.   I was confused that some people didn't want this one good thing to happen for me.   And it's not just a random thing...I have been working so hard for it. Anyway, I am not trying to complain or feel sorry for myself...and MOST IMPORTANTLY I don't want to lessen the amount of love that was and continues to be sent our way by focusing on negatives.

My family and I are not the only ones struggling through hard times.  Some people are fighting battles that we can see, while others are going through rough patches that are not visible.  I urge all of you to treat everyone around you with love and compassion... because you really don't know what another person has going on.  And please remember that while a problem might seem silly to you, it is still a problem for the person experiencing it.

Send the love when good things happen to those around you.  Send the love when bad things happen.  Just send the love.

And keep running.  Or start.  It's a great healer!

One Day at a Time

During our time in the NICU, the piece of advice I heard over and over was this: "Take one day at a time." It was for good reason...when you think about the big picture, it is just too much and too overwhelming.  Our youngest son Anders was born at 24 weeks gestation and weighed only 1 lb 9 ounces.  My beginning days at St. Elizabeth's were terrible...sitting in a dark room, hearing alarm after alarm go off, and seeing my tiny baby in a box.  I used to hate holding him because it was so scary. There were so many cords and it took at least two people to make sure that everything was connected to where it should be, etc.  I would sit there for the hour that I was allowed to hold him literally not moving.  I didn't notice until the nurses put him back how tense I actually was.  As time went on, it didn't necessarily get easier, but I did get more used to it.  I really did take the advice of one day at a time seriously.

It seemed like our finish line with Anders would be the day that we brought him home from the NICU. And yes, that was a great milestone.  It is so nice to have our family together in the same home and same town.  However, we have a whole new set of hurdles at home.  It is still a difficult balancing act trying to get Anders to all of his appointments while making sure that Quinn is cared for as well.  This week alone, we had five doctor's appointments.  Anders visits the pulmonolgist, eye doctor, gastric specialist, pediatrician, NICU follow-up clinic, gets a synagis shot each month to protect him from RSV, and receives home visits from Seward Public Schools and ESU 6 to monitor development.  Yesterday, as we were leaving our appointment in Omaha (only to find out that we'd have to schedule several more appointments there) and heading to Lincoln for our next doctor's appointment, I broke down once again.  I cried and cried until my body was so exhausted that there was nothing left.  Luckily, Philip was able to come to this appointment and reminded me of what I've heard so many times, but yet seemed to forget.  He said, "Addie, think about your training...it seems overwhelming to think about all of the miles and workouts you have to put in.  When you run, you take it one mile at a time...you don't think about the fact that you have 150 miles to put in this month.  You need to do the same with Anders...one appointment at a time.  One DAY at a time."

Running has been an extremely positive outlet for me as I've dealt with the struggles of these last seven months.  Not only do I physically feel better after I've run, but the races I've been able to compete in have also helped my heart begin to heal and help me with my ability to deal with our day to day life.  I think it is for this reason that I have not missed any of my long runs and have found a way to work out almost every day, regardless of what we have going on.  Runners are some of the most wonderful people, and I've truly enjoyed spending time with my friends at races.  I am eternally grateful to everyone who has offered our family continuous love and support.

We are about a month and a half away from the Lincoln Marathon.  Training is starting to get harder and longer.  Whether you have multiple 10 or 20 milers (depending on if you are running the half or full), remember to take one day, one MILE, at a time.  You can do it!

Happy Running!