Adeiu 2013

Photo dump of my favorite moments from this year!



Sole Burner Kids Fun Run/5K

Strawberry picking a Cuff's Farm

Hiking in the NorthWoods!

Rocks bigger than my biggest kids!


Westli found more common interests with his siblings this year than any other year! Yeah!

Say Cheese!

Oh, FIREWORKS!!!!  This kid still hasn't stopped asking for more fireworks!

Tay, Liv, and Ava enjoyed the playground more than the fireworks, but we all had such a good time!

Thomas the Tank! Choo, choo!

The Butterfly Festival

Love how much we were able to connect with Wes this year!

House Elves! We read three Harry Potter books (2,3, and 4). The characters come alive when we are finished reading and dress up, feast, and watch the movies. 

I can't believe all the things we did this year, next year can only be better!

Happy Birthday Liv & Tay!

Eight years ago my first personal roller coaster called pregnancy ended 14 weeks early with an emergency Cesarean section.  Only one actually came that way, but both came with an appropriate amount of drama.  The nurses were really worried about our bonding both because we had preemies and because I was so sick from the infection that was raging throughout my body that I didn't have the energy to see them in the NICU (the same infection that caused my labor in the first place...). The nurses had nothing to worry about, although they couldn't have known that. I was in love with these two from moments long before they were a twinkle in my eye, but absolutely by their first appearance on that tiny ultrasound machine in Dr Schell's office.  I will never forget the smile on Jon's face when we found out that we would be having twins, nor how excited we both were when we finally had a positive pregnancy test. For the first three months we saw an ultrasound image of them each week, and when we got to the second trimester the doctor wanted to wait until their 22nd week... I am convinced that Taylor wanted 

his screen time and this is why he thought he would poke a little hole in that silly bag ;) I was stunned, what do you mean I won't get to see them for like ten weeks?!? As it turned out we only had to wait about six before things progressed. After that, I listened to them daily and saw them weekly again on ultrasound until the very day they arrived.  

I don't really allow myself to think about life without them.  I am always grateful that things worked out the way they did.  I am indebted to my family who supported us on the journey, who love them intensely as we do, and support us still through the ups and downs.  I am lucky to have selected the right physician who wasn't afraid to do things her way, based on empirical data and common sense. An most importantly, I am so lucky that my babies were Taylor and Alivya.  They were so strong right out of the gates.  They fought for this life and I couldn't be more proud of every accomplishment!

Couldn't have birthday pictures without a creeper picture, right!

Genetics

I have been saying for some time now that Jon and Wes are two peas from the same pod... What I mean is that at the same age, they could be mistaken for each other.  

This was just the point I was trying to make to a friend today when I came across this photo of Jon...  If I hadn't known that I was in the file where I keep his family photos, and the quality where a little more modern... I would think I was looking at Wes.  To further support my point, I have added several photos of Wes here, all of which I think support the resemblance.  As Ava is my mini me, Wes is Jon's mini.  

 Its the hair, the shape of his face and nose, the way his bangs swoop when it gets too long... Its the expressions and the eyes...  The parentage of this child is undeniable.   

 

Steve?

2013 was all about MineCraft where Taylor and Alivya are concerned. It started out benignly enough with them designing "worlds" and building stuff like virtual Legos, but in time it has developed into a teenager size obsession. So it was no surprise that they both wanted a MineCraft cake for thier birthday. I started this adventure by researching MineCraft cakes on Pinterest... I got a lot of ideas from there, including the Jigglers water... I had a really cool layered style cake planned with blocks of "dirt/grass", sand blocks, Lava and Water, when Alivya informed me that they wanted Steve? Cupcakes. Wait, what?

She also laid out her requirements that she have both chocolate and "vanilla" (yellow) cake options. Geez, so much for thinking I had a plan huh? Historically, I started out by making fancy cakes for the kids because opening more presents five days after Christmas was sort of "old". They seemed over it and had plenty of new toys to explore. This has become less of the case recently, but now the cakes are tradition... Years past, by the time we got to Ava and Wes' birthday (Jan 10) we were not only present-ed out, but also caked out... so I made them fancy cupcakes... less fancy and less cake (and therefore less fancy). So Livi and Tay wanting cupcakes threw a big wrench in my usual approach to the birthday celebrations!

Ava and Wes have requested a Princess and Ninjago themed cake... Should be interesting.

Merry Christmas

Merry Christmas!

I never got around to sending out a Holiday Card this year, just too much going on right now. Add to that the fact that I can't access my photos right now... I guess our Drobo needs some love... and there you go, no card. Its especially distressing since we did get such a great Santa photo with the kids this year. Tear...oh well... 

We had a pleasant holiday with some tears, frustration, and exhaustion. Taylor and Wes both showed their autistic tendencies at times throughout the day. Taylor was self isolating and inflexible, insisting on opening his gifts privately and in his own way. This of course is counter intuitive to the whole gift opening as form of entertainment and satisfaction for adults who have meticulously shopped, wrapped, and imagined their excitement of each gift. Wes really needed to explore and accept each new toy or package before moving on to another package. The concept that he has a whole year to play and explore is nonexistent to him. Ideally, we should give Wes a gift every morning or every Monday through the whole year. This would allow him enough time to move on. Even Ava and Alivya grew tired by the end of the day and experienced their own "meltdowns". I don't remember this type of performance presure as a kid during Christmas, but like Jon pointed out, we only had one Christmas to attend to. Our kids are accustomed to opening gifts for Christmas on at least three seperate celebrations throughout the week. So I guess there is no comparison. Still we had a good holiday with lots of cheer spreading! Hoping you all had a bright holiday too! Happy Holidays!

Lessons in Immunity

Last month was prematurity awareness month. Usually during November, I post a lot about how prematurity has affected my children and therefore, my parenting. This year, unfortunately, I was so busy completing my nursing degree that I didn’t have time to post to my blog. Still, as my eldest twins are poised to turn 8 years old next week, I was reminded yet again what it means to be the parent of preemie (or four as it is in our case).

 Over this past weekend, we took a minitrip a few states away to visit family. When we left, our eldest daughter had been in her yellow zone asthma medications for five days. We move from the green zone meds to the yellow zone meds whenever we see signs or symptoms of her triggers. In her case triggers include a seasonal cold (cough, runny nose) and cold weather (which can cause a cough and runny nose). Thus we start yellow meds when she has a cough, runny nose, or other shortness of breath, dyspnea or wheezing… Since our temps this month have averaged around negative numbers (and therefore super negative windchills) it was not at all surprising that she needed her yellow zone medications. 

 Friday she was excited, active, and running around. Saturday she was still active, keeping herself entertained, not running around, but well. By Saturday night I started to have some concerns, namely the tell tale rosy red cheeks she develops when she is about to tank-healthwise. I first noticed them during dinner, when she wasn’t overly enthusiastic about eating. I gave her some Advil and had her lay down. The next morning, Sunday, is when it all hit home. She was lying on the couch moaning and crying. She was warm, but not burning up, still rosy… thermometer read 98.9F. She told me she was dizzy when she stood up and didn’t sleep all night. I gave her some more meds and she fell asleep for an hour or so while we found a local Urgent Care. 

 The urgent care we found was amazing. They got us back to a room quickly and we saw a provider within 15minutes. They did a strep swab, gave her a nebulizer treatment, and took a chest xray. 

 So what does this have to do with prematurity? EVERYTHING… 

 Liv had already developed right upper lobe pneumonia. Her symptoms, a runny nose, began on December 15th. The common cold typically runs its course in 7 to 10 days. Therefore, nurses and doctors often advise patient’s to allow these symptoms 7-10 days to resolve, the principle being that after that time period it is less likely that the causative agent is a cold. So because Liv has asthma, which is a large part due to the fact that she was born 14 weeks early (26 weeks gestation), weighed 1lb 14oz at birth, and was ventilated for more than three weeks during her first month; her body cannot fight infections like yours and mine (typical healthy people). Add to this, the fact that the medications that we have to treat asthma (strengthen ventilation by reducing restricting inflammation within the lungs and dilating bronchial airways) actually also cause immunocompromise by restricting inflammation (the first step in our natural humoral immunity). 

 My point is that within the time the average person takes to fight off and recover from a cold, my child developed a debilitating pneumonia. If this were an isolated case, it might be less impressive, but the fact that she had pneumonia last month (November) and the month before (October) and two months before that (August) and at lest five other times in 2013. The fact that she smiles through it all, doesn’t let it defeat her, works hard in school, plays hard, and just finds everything in life wonderful and amazing… says more about her than me.

 Prematurity is a syndrome, and it lasts a lifetime. In 2008 US News and World Report wrote an article about the lasting effects of prematurity. In it was cited a research report published in the Journal of the American Medical Association in March of that same year. This study concluded that for their subjects born between 22 and 27 weeks gestation the rate of mortality (death) during their early childhood (ages 1-6years) was 5.3 to 9.7 times higher than children born at term and late childhood (ages 6-13) 7 times higher. Other studies have suggested that preemies who live into adulthood are more likely to suffer from COPD, sleep apnea, and other disorders involving their respiratory tract. 

 Alivya will always struggle with lung infections. She will probably always take daily inhaled medications in order to breathe comfortably every day. She will always be more susceptible to colds, flus, and minor upper respiratory infections. Her fate lies in the technology that asthma and pulmonology research develops, but prevention of prematurity can prevent this from being the reality of so many others.

All I want for Christmas

All I want for Christmas is to finally (really) be done with school... and maybe a job :)

As for the kids, they all want Creepers...  Don't know what a creeper is?  Well T has you covered, its that crazy Green thing that has invaded my holiday photo with Frosty... a character from the online video game sensation MineCraft.

Wes, I think would be happy with balloons, or a spinning thing that actually worked... 

Santa visit was a huge success, no tears this year.  Ava was a little bashful at first, but she warmed up.   Big thanks to ThedaCare for putting on this breakfast with Santa again this year, I love avoiding the Mall Santa! (Eight years and counting)

I think we might get one more year in for the big twins.  Liv told me that her little friend Cordelia told her that there was no such thing as Santa.  When I asked her what she thought about that, she told me that she knew there was because of something about Dad making noise in his room... didn't make a lot of sense, but as long as she concluded that there was a Santa, I thought we could ride it out another year :) How did they get so big?

JFK

My interest in the Kennedy clan started a few years ago when I downloaded and read a book called After Camelot.  Since then, I find myself digging for new books to read on the subject, new videos and movies to watch, anything with the name fascinates me.  Even so much that one day a month or so ago, I was doing clinicals at a local nursing home and I heard the name Skakel on one of the resident's television sets... I had to go check it out! (Ethyl Skakel Kennedy is the widow of Robert F Kennedy... in case you are not already acquainted...)

So the passing of the 50th anniversary of the Kennedy assassination has absolutely caught my interest.  In fact I just finished reading a new book on it.  I also watched a fascinating documentary that caught my eye because it professed to be about the "other shooter", but turned out to be about a complete psychopath who only manifested his psychosis through the events of the assassination.  Still "Interview with an Assassin" was extremely interesting... not from a Kennedy obsession point of view however.

I don't have an opinion on the conspiracy theories really. I believe that there is definitely more to the story than what the public has been given, and the whole of it is simply tragic. I was originally pulled into the mystique of it by a profound curiosity to to understand why it was so moving to nearly everyone.  I wanted to understand why nearly everyone remembers where they were when they heard the disturbing news.

I don't know if I am really any closer to understanding these things, but do think I have gained some perspective on the times, and most definitely they family.  I thought the assassinations would be the most interesting tale they had, but in fact, a series of tragic loses in their most inner ranks really completes the picture of their allure. How a family with so much wealth and power becomes victimized over and over by misfortune and tragedy is simply fascinating to me.

"But Goethe tells us in his greatest poem that Faust lost the liberty of his soul when he said to the passing moment: "Stay, thou art so fair." And our liberty, too, is endangered if we pause for the passing moment, if we rest on our achievements, if we resist the pace of progress. For time and the world do not stand still. Change is the law of life. And those who look only to the past or the present are certain to miss the future."  --"Address in the Assembly Hall at the Paulskirche in Frankfurt (266)," June 25, 1963, Public Papers of the President: John F. Kennedy, 1963.

World Prematurity Day

 It really is amazing to me that eight years have past since the day we lurched into parenthood so unexpectedly. It was Novemeber 20th, 2005 when I woke up feeling crampy and miserable on the first day of my 20th week of pregnancy.  Halfway through that twin gestation pregnancy, I think Jon and I both were just starting to really get excited about the upcomming birth.  Our road on that journey was already marred by infertility, signifcant first trimester bleeding, bedrest, and just worry. But at that point, we had been several weeks without a complication, and finally found a peaceful place in the pregnancy. 

I spent most of that day just feeling really worried and uncomfortable, but I didn’t really think I could be in labor. After dinner time, I finally gave into the panic and called my doctor. It was all history from there. Taylor and Alivya were born on December 30th, six full weeks after my water broke upon arrival at the hospital that day. They were fourteen weeks preterm, sick and tiny. Together, they weighed only 4 lbs 1 oz.

As things began to feel like they were “settling down”, Jon and I started talk about another pregnancy. Obviously, no one wanted to repeat what had happened the first time around. We talked extensively with my physician before we made our decision. She reassured us that there was no evidence to support the assumption that I could not carry a baby to term. The only pregnancy related complication that resulted from my first pregnancy was the fact that I ended up with a vertical incision on my uterus that would make vaginal birth contraindicated for me. With this knowledge, we returned to our fertility specialist with the goal of achieving a single gestation full term pregnancy.

On January 9th, 2009 I was 29 weeks pregnant and in labor again. Ava and Westli arrived eleven weeks early the next day. Together, they weighed 7lbs 3 oz.

For a long time, I thought the story of our tiny babies was their ability to survive being so small and sick. I definitely don’t downplay the significance of their birth, nor the miracle of their survival. To have one baby, born so early and frail, survive is miraculous, but to have four is utterly amazing. As time has past, I have learned that their survival, their time in the NICU, and all the special things we endured as a result, were just the beginning of the story of Prematurity.

Prematurity is a chronic health problem. Prematurity is at least part of the reason our house is crawling with microbial illness from September to March. Prematurity is the reason we still max out our deductibles and out of pocket health costs each and every year. Prematurity is the reason my eight year olds still wear clothes they should have out grown three years ago, and still scarcely weigh 45 lbs. Prematurity is why I feel like every step in their lives has been a battle and why I feel like the fight is sometimes gone. Prematurity is why I know that there are home health professionals, pediatric physical, occupational, and speech therapists, and individualized education plans. Prematurity is why I call myself a special needs parent.

The fact that I have a child with cerebral palsy, two with autism, and two with asthma is only secondary to that fact that they were all premature. So every year, when November roles around, I get on my soapbox about prematurity. My kids, my children, are amazing wonderful enigmas in this world. I have celebrated their every triumph, even those that average parents do not have the perspective to realize are triumphs (like chewing). And in that way, I would not have my child any other way. That said, they have suffered and continue to suffer needlessly from the effects of prematurity. They struggle to gain weight, they struggle with social interactions, they struggle with attentiveness, they struggle with fluid behind their eardrums, they have vision abnormalities, respiratory compromise, immunocompromise, anxiety and more. Sure, some of these things might develop even if they were not preemies, but the simple fact that they were, increases their risk significantly.

This is why I still support the work of the March of Dimes who set their aims so high, so that every baby has the potential to be born healthy.

This month, please think about donating to support the March of Dimes and their crusade against prematurity. Every dime helps.



Happy Happy Birthday!

Happy birthday to Jon's brother Tom! 

And Happy (a few hours early) birthday to my favorite sister Amy! May you both have a fun safe day! And remember, you are both still older then me ;)

Reindeer

 

Last week my co-worker told me about this great free event that happens at the TimberRattlers Stadium where they bring reindeer and a sleigh and there is cookies and hot chocolate.  It sounded like a fun family thing to do.  So I tell Jon about it and we agree to go.  Jon called his mom and we all trudge out on Saturday morning to hang out with the reindeer.  

As it turns out, the stadium is at least ten degrees colder than everywhere else.. and it was cold everywhere else that day.  It was colder there because it is like a wind tunnel! Look at our hair! 

So at the end of the day, we were freezing, but we did have a good time.  And seriously who gets to take a picture with their hair flying next to a reindeer!?! If Jon and I were not standing there, it might look like they were flying in that sleigh!

Thanks for the suggestion Jean!

Halloween

Yes, I am aware that Halloween was a few weeks ago already.  I guess it is better late than never.  No, we have not obtained another child, the wet lady in black is a neighborhood friend of Taylor and Liv's. This year it was more difficult than others to get things together.  As it turned out, this semester was so much busier and faster and somehow more stressful than all the others.  So Jon found some costumes for Ava and Wes, and Taylor finally fit into the costume that Livi wore the last couple years.   Livi went with a theme we have been toying with all year, Harry Potter.  She made an adorable Harry Potter... She made it very clear that she didn't want to be Ginny or Hermione, she wanted to be Harry. So Wes was Mike from Monsters University, Ava was Tinker Bell, and Taylor was a dinosaur/dragon.

Halloween happened to be on a day that I had clinical, and it happened to be pouring rain, all day... So I get home from clinical and there is a literal monsoon outside.  Naturally, I know that Taylor and Liv should be picked up from school, but I also know that Wes' center was closed after school and on his way home.  So I think, as I often do, I can super mom this and run to school, pick up A&T and be home before Wes got here.  Well, no, of course he arrived, probably a minute after I left.

Of course the wonderful person who helps us by giving Wes a ride home from school, also has children... fighting to get home in this monsoon...  So this is how we start halloween.  Wet and frustrated :(

So we get in the house and I try to get the kids to finish up homework... reading...  gather all the costume supplies.  Get them dressed for the weather under their costumes.
So with three kids running around like crazy, I am looking out side and I just see rain.  At 4, ten minutes or so after we got home, I turn on the porch lights for trick or treaters.  Usually we have a couple of little kids right away.  So it made me realize that there was a real issue with all this rain.  So, I called Jon and we decided that we needed to stop and pick up umbrellas... for everyone.  Jon picked up Ava and headed to the store.  In the meantime, I was getting the other three costumed up.  Taylor and Alivya were pretty easy.  Wes was fairly cooperative at first.  He put everything on and was running around and jumping and being silly.  Then suddenly he wanted the eye off.  He was getting really frustrated and started screaming at me and then tears.  Everything ends in tears.... eventually.

The worst part is that I usually don't even know why we are having tears.  So I was trying to calm him down, and it occurred to me the irony of it all. So I took a picture.  And, as this is Wes, the camera comes out and the tears stopped.  So now we are all good again.  Just about then Jon and Ava arrived and it was time to get TinkerBell ready.
So eventually we did get everyone costumed and umbrella ladened.  And we hit the road.  Oh it was WET! So Taylor and Liv did well managing their umbrella and their baskets. Wes had no interest in carrying a bag or basket, he was all about the umbrella.  Wes wasn't even too into actual trick or treating.  I think he just loved walking down the street in the rain and playing with the umbrella.  Ava was having a really hard time managing the umbrella and the basket.  She kept bumping into me and every time her umbrella hit me a huge puddle of rain fell on me. I was soaked when we got home.  Eventually, I ended up holding the umbrella over her head.

After about an hour we had made our way around the small block by our house.  And I was soaked and exhausted... hungry.  So I took Ava and Wes home while Jon took Tay and Liv around a little more.  So while it was relatively warm this year, it was just a really wet Halloween.  Lots of candy was collected (and eaten :( and everyone had at least a little fun too!

Reflections

Today I finished up another class in what was once a long list of courses that stood between me and a career I started towards a long time ago.  I'm not really an indecisive person, but I do like to dabble in a little bit of everything.  Crafts, for example, I'm not a great cross stitcher, crochet-er, quilter, etc.  But I like to do a little bit of all of it.  I think I like the challenge of learning something new.  Such has been the journey of my life.  Late in elementary school I realized that I wanted to be recognized for my hard work, and I realized, perhaps for the first time, that I actually could achieve in that way, academics I mean.  I perfected this craft in Middle school.  I was on the honor role all the way through, yet I was never in QUEST or gifted and talented or anything like that.  It was much later in my life that I came to understand that I wasn't in those groups because my "gift" is hard work.  I wasn't born "smart", and my "achievements" came because I invested myself in working hard.  In high school I learned to deal with my own failures.  Yes, I got a B and it threw my world upside down.  I taught myself to expect certain things of my own performances.  After that first one, it wasn't as hard to get another.  I couldn't tell you today just how many of them I had in high school, even though I am sure there was a day I thought I would never forget.


This was also the first time I tried to compare myself with other students who "achieved" like me.  Most of them, gifted and talented, still blew me out of the water.  Not only did they have excellent academic achievements, but they were playing sports, participating in clubs, and making a college portfolio.  I knew I wanted, no needed to go to college, but I had no idea what that really meant.  I did what the school councilors told me to do.  I took those silly career interest exams.  Yes, they all said I should be a school teacher...  I had done enough babysitting in my pre-teen and teenage years to know that I did not want to be a school teacher.  I actually had no idea what people who went to college did.  All I knew was that people who went to college made "good" money.

In seventh grade my best friend invited me to participate in a volunteer activity at the Grignon Mansion in Kaukauna.  I did so, and I never looked back.  I spent a lot of my time volunteering there, and eventually I was invited to be a paid docent during my summer break.  I was totally in love with local history (the Grignon Mansion was one of the very first modern day houses built in the Northeast Wisconsin Frontier).  The curator at the Mansion became my friend and role model.  I learned so much from Jane.  Suddenly I was surrounded by intelligent academic people who all went to college. Thus, my understandings and impressions of "college" began to form.  I didn't really know what Anthropology was, but I knew a lot of people who were majoring in it, most of them I met in connection with my work at the Mansion.  I took a really poor class in high school that really didn't clarify things for me, but at that point I don't think it really mattered.  My mind understood that Anthropology was what museum people did, and I could do museum work, so I would major in Anthropology.

Obviously it didn't take long for people to start asking me what I was going to do with a degree in Anthropology.  For the first oh, three years, I told them I would work in a museum.  Duh, that is why I went down that path in the first place right? Then I did an internship at the Milwaukee Public Museum.  What an amazing opportunity!?!  I loved walking through the exhibits, working with the artifacts, even learning about cataloging.  I also made side money through my job in the Marquette University Archives.  There I got to catalog and inspect brand new collections that had never been examined before.  (Not to mention handle and drool over other collections).  So what wasn't to love? Yeah, money... not only do these people not make a lot of money just from doing their jobs day in and day out, but they were constantly looking for grants and begging for money via fundraisers etc just to do what was right for their collections.  The Grignon Mansion, my love and joy for so many years, was in desperate need of restoration... TLC... and there just wasn't any money in it.  Not only did we fail in our fundraising efforts, each year I saw more and more of the services slip away. It was supremely depressing.  And to this very day, I hate trying to persuade people to part with their precious bucks.  Obviously my love for history and museums was not going to pull me through a lifelong career in it.

So then I took a class in paleontology... so awesome to learn the history of human kind. I got really into the bones and the debate of the fossil records.  I discovered that subconsciously, I had also been limiting myself to classes that I thought I could do well in.  This class was sort of test for my own confidence that I could learn some really complex information.  Then I wanted to do forensic science.  So I took an anatomy and physiology course.  This monster was 5 credits and included a lab and cadaver section.  I thought of it as a challenge.  If I can do well in this class, then I can probably do some of the other science classes that I had been hiding from.  So there in my third year of college, I first started to let myself learn.  And when most people were taking "blow off" senioritis type electives, I took Chemistry, Biology, A&P,  and Physics.  I completed my degree with a minor in Biology and all the prerequisite course work for medical school.

While I regret that I made decisions about college out of fear and lack of knowledge, I recognize that I simply didn't have the resources to know what my options were.  I still think my anthropology degree is relevant in every angle of my life, and is therefore totally valid.  However, I might have decided to do it the other way around if I had started with the knowledge that I have now.  So as my graduation from my second degree looms here in the not too distant future, I am feeling accomplished, yet exhausted. I wonder what my dad would say to me now?