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...

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 was delivered, which means he got 2 weeks, 2 days longer in utero than Charlotte.  What a difference those 16 days made!  Cooper came out quite....husky at 4 lbs, 11 oz and 16.75 inches long.  There is speculation that I was developing gestational diabetes, which explains how he got so big between the 20 week ultrasound estimates and his birthday.  Unsurprisingly, he came out quite cute.



Cooper's residence in my womb ended early because of pre-eclampsia and signs of HELLP.  Although I did not get as sick as I was with Charlotte, it was pretty clear to me around Christmas that things were not going well.  My goal had been to make it through the holidays, and we barely managed that.  I had a doctor's appointment the Friday before he was born and was sent home with instructions to do as much bed rest as possible over the week-end.  When I returned to the doctor on Monday, my blood pressure was quite high, so I was admitted into the hospital for what was first hoped to be just a 24 hour monitoring.  On Tuesday, results from my 24-hour urine collection showed some signs of kidney problems and the blood work revealed problems with my liver.  On Wednesday, there was a sliver of hope that maybe I would get to go home on bed rest because my blood pressure stabilized and decreased a bit from the magnesium sulfate I was given, but on Thursday morning, my blood work showed increasing problems with my liver function and the doctor decided it was time to deliver.  Here's how that all unfolded:

Tom enters my hospital room around 9:30.  I start bossing him around, asking him to pre-pack up my stuff in hopes that I will get to go home.  

Doctor enters the room about 5 minutes later.  Looks serious.  Sits down and says "your liver isn't working, we are going to have the baby today."

Silence.  

Tom gathers his composure and says to the doctor, "we've got family in Oklahoma I need to call.  Should they come this morning or this afternoon?"

Doctor responds, "they can come whenever they want.  But they won't be here when the baby is born because we are doing it now.  Tell them no need to speed."

Alrighty then.  Just as it was with Charlotte- lots of waiting, lots of wondering, lots of long days feeling crummy and then a life-changing visit from a doctor ready to get the baby born.  Within about 10 minutes, the nurses were prepping me for surgery.  Within 20 minutes I was in the operating room.  Unfortunately the anesthesiologist had a difficult time getting my epidural in, which mean a pushing and prodding in my spine that I fear I will never forget.  He almost decided he would have to put me under for the c-section, but luckily he tried one more time to establish the epidural and was successful.  The NICU team came in and prepared for the baby and the next thing I know, the surgery was underway.  It was much more controlled than with Charlotte- although people were moving quickly and seriously, I didn't feel as panicked as I did with Charlotte because there seemed to be a little less urgency and concern.  Cooper was delivered at 10:49 a.m., and with that final tug out of my uterus, we became a family of four.  It took him longer than I liked to cry, but eventually he let out a wail.  The NICU team stabilized him and was able to hold him up for me to see before whisking him up to the NICU.  The surgery then went from c-section to tubal ligation.  Here's how that all unfolded:

Doctor says, "now, you have signed a form and verbally requested a tubal ligation.  I must ask again- is this what you want?'

I respond, "you are kidding, right?  I'll sign that form a hundred more times.  Tie me up and use triple knots."

Doctor and nurses laugh, then doctor asks, "even if you won the lottery and became a billionaire, are you sure you want to be sterilized?"

I answer, "if I win the lottery and want another baby, I'll pay a surrogate.  Sterilize me.  And if you can do it now, sterilize Tom for good measure."

Doctor and nurses laugh some more.  I assure them I am not joking.  

Cooper was a big surprise.  A pleasant surprise, as my dad would say.  We didn't know we wanted another child until we found out one was on the way, and we are, of course, thrilled he is here.  We are grateful he got as much time in the womb as he did and we are hopeful that he pushes through his NICU stay with no major setbacks or problems.  He was on a cpap for a couple of days, and then weaned down to a cannula.  He did very well with them decreasing the amount of oxygen and managed to spend a couple of days with no cannula- breathing completely unassisted.  Unfortunately, he got tired from doing that and had some breathing problems, so they put him back on the oxygen.  We know all too well the NICU roller coaster, so it was not surprising that after taking some steps forward, he had to take a step back.  He's also having some issues with digestion- his tummy and intestines are being a bit too sluggish still, but with time that should also improve.  We are getting to hold him pretty regularly, which is good for him and his mama and daddy. 

It's hard to guess what his disposition is like.  The first few days, he was called the grump of the NICU- he was crabby and feisty and did not like being messed with much.  Now that the magnesium sulfate is out of his body, he is not as grumpy.  He seems less temperamental than Charlotte.  He is awake more than I remember her being, but he spends his awake time quietly observing the scene whereas Charlotte spent a lot of her awake time fussing about.  It may be wishful thinking, but I sense he is a little calmer than his sister.  He also seems a little lazier than her.  We will see if that assessment holds in the coming weeks and months.     

Some Cooper cuteness.





He's a snuggly little guy and he gets pretty pissed off when the nurses take him from my chest back into his isolette.  

Tom senses that Cooper will enjoy sleeping on him while he watches baseball this spring, just as Charlotte enjoyed sleeping on him during baseball season 3 years ago.  



Last night the nurse decided Cooper should play dress up, and she let him put on a hospital gown.  Adorable.



Today the nurse is having him sit up for short intervals to see if that helps with his reflux.  He wasn't sure what to think of this new addition to his routine.    





I will blog again soon to share how Charlotte is doing through this big transition.  She deserves her own entry because it really has been quite a ride for her lately and we are so proud of our girl for being such a trooper.  Needless to say, we are happy to meet our newest addition and feel very excited about the future for our sweet family of four.  We are grateful for all the love and support we've gotten, not just through Charlotte's journey but now with the early arrival of Cooper.  Happy New Year to you all!  

Friday, November 22, 2013

Charlotte's Web: Seriously Smitten.

Charlotte's Web: Seriously Smitten.: Fair warning: All I'm going to do is talk about how awesome Charlotte is these days.  I'm going to skip over describing in detail ...