Tuesday, July 1, 2014

Charlotte's Web and Cooper's Town: A Year Ago Today

Charlotte's Web and Cooper's Town: A Year Ago Today: The title of this entry is not, in fact, reference to how long it has been since I last wrote on the blog (though it seems like it has bee...

A Year Ago Today



The title of this entry is not, in fact, reference to how long it has been since I last wrote on the blog (though it seems like it has been that long).  There has been so much going on and writing, usually an outlet for me, placed me in too vulnerable a state and I found myself shirking away from the keyboard.  But then it became July 1, and I remembered a year ago today.  

July 1st is and always has been an important day in my life- it's my dad's birthday!  But last year, it became an even more momentous day because it was the day I found out about Cooper.  Sweet, surprising Cooper, unplanned but perfectly created.  When I found out I was pregnant with Charlotte, I wanted to hold in the news to myself just to enjoy the delicious secret that I had a child growing inside me- it was news almost too big to want to share.  When I found out I was pregnant with Cooper, I wanted to hold in the news because I didn't want to speak the pregnancy into reality until I was over the shock and the fear and the guilt and the concerns.  Such different responses to the appearance of a second pink line on a white stick.  

A lot can happen in a year.  A year ago today, I found out about my unexpected bundle of joy.  A year ago today, I was starting to relax more into my parenting, feeling like I was finally only half a step behind Charlotte rather than running to catch up to her from a block away.  A year ago today I was taking a much needed breather from a frantic writing pace- in the spring of 2013 I finished my 292 page manuscript and I finished a shorter, co-authored manuscript.  A year ago today, before I saw a second pink line, I felt pretty secure and like I was getting back into my groove.

And then, in a flash, things changed.  A positive pregnancy test shakes things up, no matter the circumstances.  I was in shock, I was so very scared, and the part of me that likes to plan things to the nth degree was extremely upset.  We had just survived one difficult pregnancy, premature birth, and challenging infancy; the last thing I felt I could face was doing it all over again.  But a year ago today, I started doing it all over again.

In our day to day lives, it is so easy to get into our routines and not see much variation in it.  We get settled, we get comfortable, and in some ways, we get complacent. But the truth is, we don't know what will change in a day, a week, a month, or a year.  Sure, there are things we can predict, but there are always shake ups just around the corner, lurking.  And that can be a good thing, even while being a scary thing.

We got a huge shake up a year ago today.  Cooper became a known entity out of the blue.  That second pink line was only one big change we would experience between July 1, 2013 and July 1, 2014.  Coop went from being a blob on an ultrasound to a little guy snuggled up in his in-utero profile picture to a surprisingly big baby born 10 weeks before he should have arrived.  His seemingly smooth ride in the NICU turned into a different type of challenging infancy than what we experienced with Charlotte.  His pleasant disposition and quiet presence is in stark contrast to that of his sister when she was an infant, but his health issues outside of the NICU earned him the unenviable description of "medically complex," leaving many specialists scratching their heads and offering varied, and sometimes contradictory, opinions.  He shook things up by reconfiguring our family, not just in number, but in personality and function.  Charlotte adores her baby brother, and gauging by the way he smiles at her, it is clear the feeling is mutual.  We've seen a new side of Charlotte I don't think we knew existed, and that comes from the shake up of adding a sibling to her world.  

A lot can happen in a year, even in a year when things are already in transition by the addition of a baby.  Without knowing it a year ago today, this was my last year at the U of A.  I type this entry amid stacks of boxes and with a to-do list a mile long creeping into my brain, distracting me from my writing.  It was not part of the plan I had laid out a year ago today, but it is in motion now and in about a week, my family will be rolling into Durham, North Carolina where we will start a new chapter in our life.  To say this is bittersweet is an understatement.  I enjoyed and appreciate my time at teh U of A and I am proud of what I accomplished but also disappointed in what I left unfinished.  There's much I wish I could do again and much I wish I could do better.  There are things I will miss about Fayetteville- the stately outline of Old Main in the city skyline, the just-the-right-sized Farmers Market, the school Charlotte landed in, and the comforts afforded by living in a small university town.  We have some wonderful friends here and I know without doubt I will not find a better group of moms and daughters for Charlotte and I to call our friends than what we have found with Cristina and Clara, Bianca and Carys, Hazel and Yen, Heather and Pearle, and Eve and Clara Millie.  These women and their daughters have added such richness to my life and to Charlotte's, and they helped make Fayetteville home for us.  But I am also excited to explore a new city that, from all accounts, is a great place to live.  Durham will have more specialists with fresh eyes to help unlock the mysteries of our medically complex son.  Durham is a place where Tom can get back to his preferred industry and where we will be much closer to his family.  Durham will put us closer to the beaches that I long to include in my children's childhood.  I'm excited about my new job there and hope that it ends up being a good match for me and my interests and skills. 

Without a doubt, the most bitter part of the bittersweet cocktail of this move is leaving the close proximity to my family that I have enjoyed since moving here.  I never dreamed I would be able to find a job within 2 hours of my family in Tulsa, so to leave that behind is devastating.  They are so much a part of our lives, even with the 100 miles between them and us.  My parents are always here when we need or want them, we get to attend family birthday parties and game nights, and I know there will always be family members up for something if I want to make plans.  It has made my life so full, after living so many years away from home, to be able to be close to home again.  I know this will be the hardest part of the transition and it breaks my heart when I think about it.  

A year ago today, I wasn't thinking about all these things.  I don't remember what I was thinking about, but it sure wasn't all this.  But that's the way life goes.  We go through twists and turns that were inconceivable at one point. We face the unknown and we face our fears and we do the best we can and hope that after the bumpy patches in the road, we arrive to the next stop as unscathed as possible and ideally even stronger than what we were.  As I struggle to sort through my sadness and anxiety and hopes and expectations of what is coming up next, I can't help but realize that a year from now, I will likely be able to reflect on what ended up being a lot of unexpected highs and lows.  Moving is never easy for me, but this is my first time to move with a partner and with children and there is something incredibly comforting to know that wherever we land, we will have each other. I will get to continue to love and be loved by Tom, Charlotte, and Cooper.  What a gift.  A year ago today I'm not sure I was as clued in to how amazing it is to have your own little family and the security that comes with that family.  I hope that a year from today, Charlotte, Cooper, Tom, and I are happy, healthy, and making the most of the daily, weekly, monthly, and yearly twists and turns that we face.  

Fayetteville, you've been good to me.  You gave me a fulfilling job with many wonderful opportunities, inspiring colleagues, charming surroundings, incredible friends, and you are where my little family was established and where I was able to intertwine my life with my family in Oklahoma again.  Durham, you've got a lot to prove to us.  Let's see where we stand a year from today...


 My babies.  




  
Toughest kids I know.  Charlotte had her tonsils and adenoids out at a local hospital while Cooper was admitted to Children's Hospital in Little Rock for a virus and dehydration.  Both kids fought through their challenges and are back to health.  


Hopped off her bike for a quick jumping session.


Coop getting some physical therapy. 



If you work and play as hard as our kids, you deserve to rest as hard as they do too.  Not sure why Tom got to sneak in a nap though...



Thursday, April 3, 2014

Charlotte's Web and Cooper's Town: #tbt

Charlotte's Web and Cooper's Town: #tbt:   I like to think I can hang with the ever-changing social media trends, but I will admit it took me months before I figured out why every...

#tbt



  I like to think I can hang with the ever-changing social media trends, but I will admit it took me months before I figured out why every week my Facebook news feed was flooded with "#tbt."  Perhaps the origins of this mysterious blitz of old photos every Thursday started on one of the social networks I don't use, like Instagram or Twitter.  I like to think that's the case, though it doesn't excuse me for having to finally use Urbandictionary.com to learn that the acronym "tbt"stood for Throwback Thursday.  As pleased as I was to finally be in the loop, I had to face the reality that sites like Urbandictionary.com are made for clueless, decidedly uncool people like me.  That cruel realization turned me off of the whole #tbt and I stubbornly decided I would never join the masses in posting old pictures with catchy descriptions because it felt so inauthentic of dorky me.

 #tbt is an interesting concept though.  This morning a college friend of mine sent me a few old pictures from our freshmen year of college.  It started my day off with a nod to the past and I found myself grinning as I reminisced for a few minutes about my college days.  It put me in a nostalgic and contemplative mood.  As my day progressed, I was pushed into more "throwback" memories, and all of a sudden, #tbt became more than a light hearted social media activity.

  It is easy to become somewhat cavalier when you have a second preemie, especially if your second preemie comes out later and bigger than your first.  It's a "been there, done that" kind of experience.  You know what to expect, you aren't scared by the medical jargon, you are fluent in the acronyms, the procedures don't freak you out as much, and when the nurses and therapists and doctors and social workers remember you from the first time around, you feel bolstered by your street cred as you walk into the NICU every day.  But it is dangerous too.  If your first experience with a preemie was as blessed and lucky as ours was with Charlotte, you can become complacent and aloof, never really believing (or, at least never wanting to believe) that the outcome would be any different.  I don't mean this to sound ignorant or arrogant- through our first experience with a preemie, Tom and I learned how touch and go the health of premature babies can be and we learned firsthand with Charlotte and with babies around the NICU to never take things for granted when it came to the health and wellbeing of a preemie.  It was just really easy to relax a bit when our big boy came out, 2 weeks later in gestation and 2 pounds heavier than Charlotte.

  Lately though, even after being discharged from the NICU 6 weeks ago, I am starting to feel like a first-timer again.  The fears and stresses that come after life in the NICU are so profound and all-encompassing.  Yesterday I was on the phone with one of Cooper's doctors discussing a change in medicinal protocol when the home-health company called to set up an oxygen tank delivery and a text message popped up from a speech therapist trying to schedule a feeding evaluation.  I remember when Charlotte was fresh out of the NICU I had to eventually concede defeat and admit that I could not rely on my memory alone to keep track of all her appointments.  I started actually using the calendar on my phone to keep up with her schedule.  This time around, I'm 3 years older and 3 years more tired, so in addition to using my phone calendar, Tom put up a dry erase monthly calendar board for me write in appointments.  So far, the double calendar system seems to be working, but I wake up in the morning reaching for my phone to make sure I know what we have scheduled that day.

  Cooper is having some problems.  Pulmonary problems, to be exact.  When he was sent home from the NICU on oxygen and a monitor, it felt like it was just a safety precaution and would not be long term. We figured after a month or so, we would be weaning him down from his already low flow setting and be off the oxygen soon after.  Instead, we seem to be moving in the opposite direction.  We've been instructed to increase the flow of his oxygen not once but twice now.  We've had one trip to the ER related to breathing issues.  We were prescribed 2 steroid inhalers, then another was added for good measure.  He's also on oral steroids now and we have to suspend feeds with breastmilk and instead are giving him a special formula with a thickening agent to make sure he doesn't aspirate.  Long story short, Cooper isn't breathing all that easy, and that means neither are Tom and I.

  This week all these pulmonary problems have taken center stage at our house, and today it occurred to me that I am not just experiencing a #throwback Thursday, but a whole throwback post-NICU life.  Although I don't think #tbpnl is ever going to catch on in mainstream media, I have a feeling for awhile longer at our house, we will be facing the challenges and fears that families of babies born too soon often face. When Charlotte was a recent NICU graduate, I remember spending so much time and energy wondering and worrying about her future.  Would she meet her milestones?  Would her stomach issues resolve?  Would her heart defects need repair?  Would she ever stop crying and start sleeping?  It's embarrassing to admit that bringing Cooper home, even with all his oxygen supplies, I didn't really concern myself with such thoughts.  Charlotte wrote the first volume of our life with preemie saga, and it was hard for me to admit that the second volume of that saga might have different twists and turns and outcomes.  Today, as I attended another appointment with Cooper and had several more scheduled, I realized I was having a #tbt moment.  I felt as scared and frustrated and puzzled and sad as I often did with Charlotte during her first year of life.

Over dinner, Tom and I mulled over the issues and it just felt so familiar, like we were back to voicing our concerns about Charlotte, trying (and failing) to make sense of conditions not yet known.  But it was different this time too.  Charlotte was sitting at the head of the table, happily oblivious to the torment Tom and I were feeling.  Cooper lounged lazily in his bouncy chair, not realizing he was the center of our attention.  We are weary, not just from the short time we've been developing concern about Cooper's health, but from the previous years of worrying about Charlotte.  But we are also stronger, bolstered by the knowledge and faith we gained as we watched our daughter conquer her challenges.  Cooper's struggles will be different and the outcome may not be entirely the same.  He must go through his own post-NICU obstacles and Tom and I must brace ourselves for the bumps ahead.  We have experience under our belts this time around, but there are still many unknowns.  What we do truly believe though is that in another 3 years, we will find ourselves sitting down to dinner with our exuberant daughter and chilled-out son and one or both of us will remember that it wasn't always so easy or settled.  Our son is strong and he will get stronger.  He's got to- how else will he keep up with his big sister?

#tbt indeed.



 Fist bump, anyone? 



Catching some zzzzz's

 NuNu likes to keep close tabs on the boy. 



It would appear that Cooper is photo-bombing Ziva.  It would also appear that Ziva had no interest in being photographed. 


Never one to walk away from a challenge, Charlotte attempted to eat an ice cream cone as big as her head. 


It was a challenge Charlotte was excited to conquer.  And conquer she did- she ate every last bite.  



Getting her crayons organized.



Our crew.  On our bed.  I guess we were allocated either the space between the children and the kids or the floor.  Thanks, guys. 

Tuesday, February 11, 2014

Charlotte's Web and Cooper's Town: The same, but different

Charlotte's Web and Cooper's Town: The same, but different: I never planned on ending up with a baby in the NICU again.  Cooper was what my dad calls a "pleasant surprise," but his growing...

The same, but different



I never planned on ending up with a baby in the NICU again.  Cooper was what my dad calls a "pleasant surprise," but his growing presence in my womb sparked a growing fear of experiencing another difficult pregnancy, scary delivery, and stressful NICU stay.  My dad always warns me about self-fulfilling prophecies when I worry about something bad happening, so I tried hard to focus my energy on envisioning a longer, healthier pregnancy that ended with a scheduled c-section.  Self fulfilling prophecy can go both ways, I figured, so I tried to think positive thoughts.  Very early in my pregnancy I purchased some maternity clothes- I felt like it demonstrated my positive energy channeled for thinking a long pregnancy into being.   I barely wore any maternity clothes when I was pregnant with Charlotte, so those clothes represented making it to 28 weeks and beyond the second time around.  My commitment to wearing those clothes was so strong that I cut off the tags.  It sounds so silly, but it was my way of envisioning a long pregnancy. Whenever I felt anxious, I would go and look at those clothes, particularly a shirt with blue polka dots that was uncharacteristic of me but I thought it was so cute I couldn't resist buying it, and I imagined wearing them late into my pregnancy.  

I didn't wear that polka dot shirt.  My fashionable readers may think that a good thing, since I suppose polka dots might not earn me a spot on the best-dressed list, but it was disappointing to me.  I didn't get big enough, round enough to fill that shirt.  For a couple of weeks, I found myself dwelling on that damn shirt that I didn't get to wear.  One night, as it caught the corner of my eye hanging in my closet, I realized that my dwelling on that was quite similar to how after having Charlotte, I was resentful that I didn't have any pregnancy pictures of myself, save one lame bathroom selfie with a barely-there bump that could easily have been mistaken for a muffin top.  For months after Charlotte was born, I was bitter that I didn't have a picture of a proud, round bump.  Funnily enough- this pregnancy, though I went longer and did get a larger bump, pictures of it weren't important to me.  But that silly blue polka dotted shirt was important to me and I felt myself bemoaning my failure to get to wear it.

As I thought more about my resentment about the lack of a pregnancy picture and the never- worn shirt, I started thinking more about this whole Preemie Birth and Life in the NICU, the Sequel that we are experiencing.  I've concluded there are lots of similarities and lots of differences between the two.  

Same:  being in the hospital stinks.  Different: being in the hospital while your poor toddler and partner try to find some degree of normalcy stinks even more.   I missed Charlotte almost desperately at times and I felt incredible guilt that Tom was left trying to balance her needs with mine.     

Same: The waiting game is wretched.  Wondering when the disease is advanced to the point of necessary delivery is so stressful.  Different: This time around, I was not as visibly sick as last time and aside from my headache, it was difficult to explain to the doctors my symptoms.  I just knew I wasn't "right," but it was hard to explain what was "wrong."  My blood work did the talking though and revealed my liver was shutting down.  Last time, my problem organ was the kidneys.  

Same: Once a doctor decides it is time to deliver, s/he means business.  With Charlotte there was less than a 30 minute period between the doctor deciding it was time and her arrival and with Cooper there was about an hour between the decision being made and the baby being born.  Those minutes in many ways go by like seconds and it feels like a whirlwind.  Different: I was more coherent this time around when the decisions were being made, and frankly, I would have liked being a little more out of it.  I was scared, really scared, when they wheeled me into the operating room.  I kept thinking of the first time I was in that situation and I was truly distressed to find myself facing a c-section and preemie delivery again.  When they laid me down to start the surgery, I remember thinking to myself that I could never, ever put myself or another baby in that situation again.  

Same: C-sections are rough.  Not that I have an alternative method of delivery to compare it to, but c-sections are freaky and scary and seem somewhat barbaric, though of course I am grateful the life saving surgery exists.  Different: Recovering from a c-section, for me at least, was rougher than the first time.  I hurt longer this time than I did the first time.  Have I mentioned I do not plan to ever need a c-section again?  That is definitely a self-fulfilling prophecy I intend to invoke.  

Same: NICUs continue to be a place of fear, stress and sometimes sorrow and sometimes joy.  Different: I was not as overwhelmed this time.  The monitors, the beeps, the isolettes, the scrubbing in, the tubes, wires, and cords- none of it was new to me and I was surprised at how familiar it all felt, like there hadn't been almost a 3 year gap between visits.  We are in the same NICU where Charlotte spent 5 of her 8 NICU weeks and to my great pleasure, even much of the staff was the same and I remembered many of them and many of them remembered us.  I would not say I was happy or comfortable, but there was a sense of security I felt this time that I did not feel with Charlotte.  I found myself hyper-aware of other NICU parents though- I watched many enter the NICU for the first time and felt so keenly connected to them, as I watched their bewildered eyes, often laced with fear, fatigue, and pain.  I know that feeling.  I don't have to look at the pictures my brother took the first time I met Charlotte to re-visit the raw vulnerability that a NICU parent feels their first time they enter the ward.  That rawness and insecurity was not as pronounced for me this time.

Same: NICUs are places where life and death occurs.  There is no mistaking the intensity of a NICU, whether you are a first time or returning parent.  Different: With Charlotte, I felt painfully scared about her being one of the tragedies of the NICU.  I could hardly see past her isolette to think much about the babies in neighboring rooms.  She was so little, so fragile and had enough bumps in her NICU stay (brain cyst, heart issues, bad lungs, and most frightening, tummy problems) that I spent a lot of time fearing the worst.  Different: Because Cooper was born deceptively big for a 30 weeker, I was not as scared of him or fear him.  He looked so... hearty and strong compared to how Charlotte looked.  He didn't have a lot of bumps in his NICU journey- his lungs are crummy preemie lungs, but otherwise, he's had a nicely uneventful stay as what they call a "feeder and grower."  In addition to feeling profoundly grateful about this, I found myself more attuned to the babies around us.  This is in part because for a few weeks, Cooper was in what they call the "Core" of the NICU, where several critical babies also stayed.  There was more sadness, intensity, and fear in that room than I care to remember and I often left the NICU feeling simultaneously heartbroken for other babies and their families and immensely grateful for Cooper's relatively good health.  

Same: As much as the NICU can be an unpleasant place to be, I felt drawn to it.  With both babies, I woke up in the morning feeling anxious to get there and would spend as much time as possible and be as active as I could be in each babies' care.  With both babies I was the annoying mom calling in the middle of the night, not because I was worried about anything specifically but because the voice of the nurse on the other end of the line was the closest I could be to my babies, so it had to suffice.  With both babies, I felt the most at peace when I was sitting in a dim NICU room rocking my child with the buzz of the machines fading into the background and the sweet feeling of a lightweight baby resting on my chest.  Different:  It is incredibly hard to have a baby in the NICU if you have a child (or children) also at home.  I have felt split these last several weeks and fear I have let both my children down.  I do not get to spend nearly as much time at the NICU with Cooper as I did with Charlotte, yet I am not home with Charlotte as much as she is used to because I am often at the NICU.  It seems impossibly hard to feel like an adequate NICU mom when I also felt a loyalty and obligation to Charlotte.  Rightfully so, children under 5 are not allowed in the NICU, and even if they were, right now siblings of any age aren't allowed in the NICU because of flu and RSV season.  This means Charlotte has only seen Cooper in pictures and on facetime.  This also means that our home life is very broken up right now and that Tom and I have rarely been in the NICU together since one of us must be home with Charlotte.  

I spent a lot of time grieving for the lack of a good picture of me pregnant with Charlotte.  I spent a lot of time upset that Charlotte never learned to nurse.  I spent a lot of time feeling cheated out of a more idyllic newborn experience with Charlotte.  I spent a lot of time resenting my lost trimester, the one I couldn't finish because of my illness.  I spent a lot of time feeling sick to my stomach and anxious at the thought of my first pregnancy and traumatic delivery of Charlotte.  And so when I started dwelling on the polka dot maternity shirt that I never got to wear, I knew I had to snap out of it.  I do not want to live under a shroud of grief, especially when I got lucky not once but twice by surviving my pregnancies and having babies that have the NICU as their first stop, not their last one.  I'm going to invoke a self-fulfilling prophecy that this time around, I won't dwell on the things that cannot be changed.  I am going to instead remind myself that although there were lots of similarities between my pregnancies, deliveries, and NICU experiences, there were also lots of differences and I get to respond differently to our post-NICU life than I did the first time.  With Cooper coming home soon, things for our family will get to be the same, but different.  And I think that is just fine. 


One more thing that is definitely the same- Tom and I made another cute baby!  Check out the pictures for proof :-)

I've been terrible at keeping up with the blog, so here is Cooper's last few weeks in a photo montage.  
This is the first time he got to wear "clothes"- a preemie hospital gown. 



Cooper has a rigorous schedule each day, with visits from a speech therapist, respiratory therapist, occupational therapist, and massage therapist.  He still doesn't know how he feels about the occupational therapy, as evidenced by the skeptical look he gets on his face when she works with him.


So exhausting being a preemie.


The doctors tried weaning Cooper off of oxygen a few times, but unfortunately, his lungs don't want to cooperate.  It was determine that he will go home on oxygen and we will slowly wean him off of it over the next couple of months under the care of his neonatologists.  When he was off the oxygen, he had too many de-sats (not enough oxygen in his blood) and it wore him out to the point that he couldn't do bottle feeds or nursing. 




Back on the oxygen cannula. 



Charlotte has been a real trooper through all this.  She seems very excited about her Baby Coo-ker.  She is especially excited about his baby gear. Here she is practicing pushing the swing (which I don't have the heart to tell her is battery operated).



Checking out the bouncy chair.  And by checking out, I mean cramming herself into it.



She likes to paint pictures for her brother.  Or, she has figured out that is a good way to convince me to get out her paints so she can make a mess. 







With her days as the only kid in our house numbered, I thought a frozen yogurt date today was in order.  She agreed.  


We are all excited to get this sweet boy home and we hope that it will happen very soon!



Thursday, January 16, 2014

Charlotte's Web and Cooper's Town: New Year, New Baby

Charlotte's Web and Cooper's Town: New Year, New Baby:   Tom, Charlotte, and I welcomed Thomas Cooper Arrington Sirois on January 2, 2014!  His gestational age was 30 weeks, 2 days when he wa...