Different

Jack being Jack...happy as can be!

I think all parents want their little one(s) to fit in.  Unfortunately, in our society, different is often perceived as bad or wrong.  So, for Jack’s sake, I don’t want him to be different.  Last week, I ran into someone that I hadn’t seen since I was pregnant.  Even so, she knew about Jack’s early arrival and our story.  She asked, “How old is he now?”  and I proudly answered, “2 and a half!”  And then she said, “Does he have any..?”  And, I didn’t let her finish…but I knew what she meant and my heart cringed (if that’s even possible).  She meant, "Does he have any issues, specials needs, medical needs?"  She meant, "How has prematurity impacted him?"  I quickly answered something about him having therapies, but that he’s doing great.  And as I drove away, I wondered, “Did I create this?  Did I ask for this type of dialogue by sharing our story?  Did I encourage a conversation that wouldn’t occur if Jack were born full-term?  Is it my fault that someone immediately asks me about Jack’s “issues” instead of what Jack likes to do or his favorite snack?"   And I started thinking and worrying about whether I should continue to be so honest and real about how prematurity has impacted Jack and our family with this blog.  Because, I know that Jack and his journey isn’t just about prematurity…but how do I make sure everyone else knows that?  How do I make sure everyone knows that Jack’s journey has definitely been different…but that Jack is not?

And that very night, one of my fellow bloggers wrote this post, "The Truth About Prematurity."  

 

And then, I stopped worrying.  As long as Jack knows that his Jack-ness is what is important, I can continue to share our experience with this blog.  Jack knows only that he is my world.  I don’t wake him up every day and say, “You were born early!  You’re a preemie!” (I usually say, “Good morning Stinker!”)  So, when I talk about Jack in my daily life (and on Facebook), you might hear about his new phrases “I need help” or “Bless you, Mommy!”  Or you might see a pic of him getting “eaten” by his folding chair.  I sometimes share these “day in the life” type stories in this blog as well.  But, that’s not my intention for this blog.  My intention has been and always will be making others aware about the impact prematurity has on a baby and a family.  For me, pretending that everything is fine and there are no impacts or effects from prematurity,  tells the public that research into preventing it and things like preeclampsia…well, it’s not really necessary because preemies are “just fine” and all “caught up” by age 2.   And it’s just not true ("Catch Up By Two?").  And people should know that.  I was at an event recently, raising funds for families affected by prematurity no less, and a guest actually said, “The earlier the better!” to a pregnant friend nearing her due date.  If that isn’t proof that people are misinformed or uneducated about prematurity… 

So I’ll keep on writing, until I’m satisfied that more people are aware…more is done to prevent premature birth…more is done to improve care for premature babies…more services are provided to children and families affected by prematurity.  I wholeheartedly believe that silencing the stories of prematurity are doing a disservice to my son and other babies born early like him.  Nothing will change or improve if I (and other preemie parents) stay quiet about the struggles he has faced so far, from his very first days, and may likely encounter in the future.    

Look at that face!  This kid couldn't be happier...he loves dirt!

You Are Worth It All

So often, the things that have saddened me about my first pregnancy and Jack’s early arrival, are the very things that scare me for a future pregnancy.  Since Jack's birth, I have thought about having another child every.single.day.  Selfishly at first, I’ll admit, because I wanted a do-over.  And now, because I’d love for Jack to have a sibling.  Yet, so many things about my getting pregnant, my pregnancy, and my “giving” birth were just wrong.  Too many of the things that Jack experienced were just more.than.wrong.  No baby should have to suffer through what he did.  Just a few weeks ago, I caught myself thinking.  “Okay…we’ll have another.  Jack will be okay with his grandmas while I’m in the NICU with the new baby.”  Seriously.  I’m planning another NICU stay.  “What an unhealthy way of thinking,” I chastised myself.  But I know it’s a realistic way of thinking, not unhealthy.  Since Jack is our first, his early, traumatic birth was my terrifying introduction to motherhood and the only perspective I have on pregnancy and childbirth.  Even so, I don’t always think about a future NICU Stay.  There is a VERY small part of me is hopeful that maybe...just maybe...the second time will be less traumatic and life-threatening.  But then again, how disturbing is it that we have to wish for a pregnancy that isn't life-threatening?  I never thought those 2 words would be used together before I had Jack.

The decision to have another baby after prematurity is not simple, nor does it involve typical worries or cares.  And talking about it isn’t so easy either.  Why do I feel like I can’t talk about my concerns about another pregnancy without the risks and realities being downplayed?  I know Jack is happy now and getting healthier…but does that make everything else that happened okay?  Getting past 28 weeks is not an acceptable “plan of care” in my book.  Telling me that I should be glad to have the one child that I do doesn’t make it any easier to accept that I may not have any more.    Saying I could adopt does not make this decision any less painful or difficult.  And yes, I know all pregnancies are different…but I have also heard from four…yes FOUR…different specialists that it is very likely that another pregnancy will be exactly the same (60-70%) or maybe even more dangerous.  It’s not just deciding whether to have another...it may also be coming to the realization that another just isn’t possible or safe.

Let’s get one thing straight, however.  Jack is worth all that we went through to become our little family of three.  I don’t in any way think Jack should have gone through all he had to, but what I went through…painful procedures, two IUIs, constant blood work, daily shots in the hiney for 10 weeks, miscarriage scares, magnesium sulfate, emergent c-section…totally worth it to get this amazing little man in my life.  I think lately, I’ve probably been driving Jack crazy because I’m always trying to love on him and as a 2.5 yr old, he’s just not having it.  If I’m honest, it’s because I am amazed by him and by my love for him…but it’s also sinking in that he may just be my first, last, only child. 

I’ve gotten many different reactions when I tell people that Jack may be our only child, but most seem surprised.  Which in turn, suprises me…until I remember.  They don’t know what I know.  They don’t know what it’s like to have to consider that you may never have a child of your own.  Or if you do, it may not happen as easily as it does for so many.  They don’t know what it’s like to be afraid to move for days and weeks after an insemination (of hubby's donation...Jack is his mini-me), hoping that if you just stay very.still, the baby just might stick.  Or maybe they don’t know what it’s like to be told at an early week that there’s a 50/50 chance that the baby may not survive.  Or maybe they haven’t been on the phone with the nurse who just revealed your low “numbers” and is heartlessly asking, “Are you having symptoms (of miscarriage)?”  Or maybe they never feared the bathroom so much while pregnant, praying that every time you sit down to pee you don’t see the bright red blood you’ve seen too many times already.  Or maybe they just don’t know too much, like I do.  Or maybe they went through all that and ended up with a healthy delivery and baby.  But, I’m guessing they probably didn’t hear this conversation between doctors and their husband:  

“This is the only way to save both of them.”

Both of them meaning me and my baby…my boy…my Jack Ryan.  But Jack was worth all that.  And another baby would be too, if someone…anyone could tell me that the next baby would survive…and that I would too.  But nobody…none of those four specialists, or anyone else, can tell me that.  (So maybe I have the answer…and am just not willing to accept it yet.)  I would do it all again if I knew that the baby wouldn’t have to go through what Jack has.  But, could I live with myself if I knowingly put another baby through that?  I know other moms have done it and I wish I knew their secret.  How do they process and move through this?  Is a bigger family, a sibling for Jack worth all that?  Worth risking my life?  Risking another baby’s life?  Risking Jack’s mother?  Or Jack’s little sister or brother?  How do we move forward with our family when the risks, both emotional and physical, are so tremendous?    

Flashback Friday: The Two P's

Preeclampsia is currently the leading known cause of prematurity.

I raise awareness about prematurity, mainly by talking about life with Jack and what our family has experienced since he was born early.  But what I don’t often talk about is the cause of his premature birth.  I don’t often share it, because there’s a fine line between raising awareness and creating fear.  Last summer, I was hanging out with a few girlfriends, one of them newly pregnant.  Everyone was sharing their birth stories; isn’t that what all moms do?  Except, I didn’t say a word.  I wanted to say something.  I wanted to tell her about the symptoms.  I wanted to say A LOT, actually.  I wanted to share my knowledge so that what happened to us, doesn’t happen to someone I love.  But I didn’t.  I didn’t want to scare her and I’m pretty sure she didn’t want to be scared.  I get it.  Who wants to know the traumatic and dangerous aspects of pregnancy?  But, I think there’s a big difference in wanting to know and needing to know.  There are just some things that are in the “need to know” category, no matter how frightening. Even though I know this, I’m still more than comfortable sharing our NICU experience and after, but the days leading up to that experience have rarely been disclosed.  Perhaps the memories are too raw or painful, more easily blocked out.  There are actually a lot of moments that I can’t recall.  Or won’t.  Perhaps there’s still too much guilt attached.  I’m still not certain why I have only told our story in bits and pieces, and not in its entirety.

Something as simple as a headache could be a symptom of underlying and life-threatening preeclampsia.

     So, usually I have my Flashback Friday topic planned days in advance, but I had trouble figuring out what to write about this week.  Other things, like the March for Babies and a short-term upcoming job, have clouded my mind lately (along with the every day events of raising Jack).  Jack survived for many reasons, one of them being he was given surfactant, which was developed through research supported and funded by the March Of Dimes.  I’ll support anything that saves babies like Jack.   (Feel free to join our team or donate:  Team Jack Ryan)  But, the more I thought about it, the more I realized that what would save babies like Jack is a cure.  Not a cure for prematurity.  A cure for preeclampsia.  What’s preeclampsia, you ask?  And therein lies the problem.  If I had mentioned gestational diabetes or pre-term labor or even incompetent cervix (IC), most of you would have a general idea of what I’m talking about.   Even though “globally, preeclampsia and other hypertensive disorders of pregnancy are a leading cause of maternal and infant illness and death,” too many women and their families are unaware.  I sure was.  Which is odd, since while I was pregnant I read two “what-to-expect” type books, belonged to multiple pregnancy websites, and never missed a pre-natal appointment.  I was told about gestational diabetes and pre-term labor and a few other common pregnancy issues as well.  But, even though my final appointment was when I was about 26 weeks pregnant (which is more than ½ way for a term pregnancy), not one medical professional or book had mentioned preeclampsia.  

 Typically, preeclampsia occurs after 20 weeks gestation (in the late 2nd or 3rd trimesters or middle to late pregnancy) and up to six weeks postpartum, though in rare cases it can occur earlier than 20 weeks.

     So, when I was 28 weeks pregnant with an unrelenting headache for almost a week, nausea, fatigue, chills...it never occurred to me that any of these symptoms were related to my pregnancy, let alone preeclampsia, and I ignored them for over a week.  I thought I had a GI bug or the flu.  I posted on Facebook on August 7, 2010:  “Heather Draper Lesoine feels awful - headache for 4 days, nausea, chills...yet, still hungry. I thought this was supposed to happen in the 1st trimester, not the 3rd. Yuck!”  A friend almost immediately responded that I should check my blood pressure (BP), call my doctor and mentioned preeclampsia because she had experienced it herself.   So I did call the doc, but also sent Jeff on his camping trip.  The not-so-helpful assistant who answered the phone just told me to check the Tylenol bottle to see how much I could take and offered me a Monday appointment (it was Saturday 8am).  She asked nothing about the severity or length of the headache or about any other symptoms.  I said nothing, not wanting to be "that" first time pregnant mom.  The headache and other symptoms worsened as the day wore on and I eventually called the on-call doc whose first suggestion was to check my BP.  I said it might be better if I just came in to be seen.  I guess, at that point, I knew something wasn’t right.  

Affecting at least 5-8% of all pregnancies, it is a rapidly progressive condition characterized by high blood pressure and the presence of protein in the urine. Swelling, sudden weight gain, headaches and changes in vision are important symptoms; however, some women with rapidly advancing disease report few symptoms.  Yet some healthcare providers may overlook symptoms that suggest preeclampsia because they are also hallmarks of a normal pregnancy, or their patients may not report symptoms for fear of over-reacting

As we drove toward the hospital, I actually began to feel better and I now believe that all the signs my body was giving me had receded because I was finally getting the care that I needed.  As the nurse checked my BP, I saw numbers in the 200/115 range and joked, “There must be something wrong with your machine.”  The nurse gravely responded, “No honey, there’s something wrong with you.”   A lot happened in the next few days (see, this is me not sharing our whole story) and Jack was born just 72 hours later, as my BP could not be controlled with medication or bed rest and I was spilling protein in my urine, had a sudden weight gain and I was dangerously close to having a seizure, stroke or organ failure (HELLP Syndrome).  Turns out I had classic signs and symptoms of severe preeclampsia.  Who knew?  Not me.  And the only known cure for preeclampsia is delivery.  Symptoms can be controlled, but delivery is the cure.  So, even though Jack was perfectly healthy at that point, I was not and we had no choice but to deliver him by emergency c-section at just 28 weeks and 5 days into my first pregnancy.    

Signs & Symptoms of Preeclampsia:

• Hypertension*
• Proteinuria*
• Edema (Swelling)
• Sudden Weight Gain*
• Nausea or Vomiting*
• Abdominal (stomach area) and/or Shoulder Pain
• Lower back pain
• Headache*
• Changes in Vision
• Hyperreflexia* 

(* I had 6 of the 9 symptoms.)

Since then, I’ve asked why I hadn’t been told by my OB and was told that I would have been, had I made it farther into my pregnancy.  I don’t necessarily hold it against them, but I am trying to understand why I wasn’t informed of this very serious disease of pregnancy and how I can get medical professionals to tell patients earlier in pregnancy.  Since we’ve entered this world of preeclampsia and prematurity, SO many of the moms I know delivered early due to pre-e and even earlier than we did at 28 weeks.  (My good friend, Christi, bravely shares her experience with the story of her pregnancy and son’s birth here:  http://miracleofoz.wordpress.com/2013/03/23/10/).  I’m thinking it couldn’t hurt to mention pre-e at the same time pre-term labor and gestational diabetes are mentioned.  I’m not sure if the outcome would have changed for me or for Jack.  But I’m always one that believes knowledge is power, even if the knowledge is unpleasant.  If I had known that my slightly elevated pressure at just 2 weeks before Jack’s birth was a good indicator, I may have advocated for myself and for my baby before it was too late to control my BP.  I might have been able to be medicated or put on bedrest.  It’s not actually something I dwell on often, the “what ifs” of Jack’s birth story.  But, the 2 P’s are always on my mind, as Jeff and I consider and then reconsider and then reconsider some more, the possibility of adding to our family.  There’s that fine line again…I’m more aware, but now more scared than ever for another pregnancy.  But, as for me not sharing what I know, I’m convinced now that I shouldn’t stay silent anymore for this simple reason:  

All pregnancies are at risk of preeclampsia.

Works Cited and Resources:

• Preeclampsia Foundation

• Peek-a-boo ICU

Miss Lisa: Jack's Biggest Cheerleader

     Jack’s early arrival puts him at risk for developmental and cognitive delays.  In the NICU, he began receiving therapies (OT, PT & Music) as soon as he was stable to help limit the impact prematurity would have on his development.  One of the things I loved about the therapists in the NICU was that they helped us comfort Jack and respond to his cues, when there was little else we could do for him.  His OT, especially, offered reassurance about Jack’s future, taught me infant massage and gave me some really great advice as he was discharged, “Just play with him!”  I know now that she was actually giving me real OT advice, for a baby’s “occupation” is play, yet it helped to think that we’d be able to do typical things with Jack at home, between all the tube feedings and medication administrations.  She definitely set the stage for our positive experience with Jack's journey through Occupational Therapy.   

     Jack was referred to Early Intervention in the NICU, so we knew that he would most likely be receiving more therapy at home.  His first of many, many evaluations showed delays in all areas (which was expected) and along came Miss Lisa in January 2011, just 2 months after Jack was discharged.  Here’s what we had to say about Jack’s first session:  “He had his first OT session with Miss Lisa last week and he loved her.  She had him laughing so hard, which made me laugh so much my cheeks hurt :)  He will have OT once a week for as long as he needs it.  The EI intervention program is great!” (February, 2011)

Jack with Miss Lisa during one of their very first playdates. 

     And we’ve been laughing ever since.   Miss Lisa came along at a time when I was my most fragile as a new mom.  I was overwhelmed by all the special care that Jack needed and beyond scared that he would get sick and end up back in the hospital.  I’ve mentioned many times that we limited his exposure to people (and germs), but Miss Lisa was one person we allowed in our home despite our fears.  I knew how essential it was for him to have the best chance at developing as he should and she taught me how to help Jack be the best Jack he could be.   I knew she was the right therapist for Jack and our family, especially when she takes her shoes off and puts them outside, deeming them too dirty for Jack to touch!  She listened to me cry about Jack’s feeding issues and planned to celebrate his eating success with a Happy Meal date someday.  When I was so afraid that Jack might “break” or might pull out his NG tube, she encouraged us to treat him like a normal baby; a message that took awhile to sink in, but it did.  For the past two years, she has offered support and a listening ear and has been Jack’s biggest cheerleader and a sounding board for his mommy!   She did as much for Jack as she did for me, and we can’t thank her enough.  I am most definitely a better parent because of her influence.   

Jack making some standing progress, with support from Miss Lisa, of course. 

     I know she is a really effective OT, based on all the awesome progress Jack has made (and I have made as his momma).  But what makes her that way is that her sessions don’t seem like a session; they are therapy disguised as a play-date for Jack.  She offers very simple solutions and advice that make a huge impact on Jack’s development – from not scraping his face with a spoon so as not to contribute to oral aversions to placing a bag of sugar on his push toy to give him more leverage for walking.  There’s “marching in the band” and stepping on the couch cushions.  She helped Jack develop into a master of “container play” and now he is always putting stuff away!  He loves his time with Miss Lisa.  And I think it’s safe to say she feels the same…I have proof in the tears she shed when he sang his ABCs and the excitement she displayed when he sat up on his own, along with the many other milestones met with her support!

Working on some fine-motor skills. 

     The great thing about Early Intervention and the therapies it offers is the support and “eyes” on your child.  It’s also the most disheartening aspect…having your child and your parenting under such scrutiny and knowing that your child has delays.  A large part of me just wanted Jack to be able to do things without so much help.  Yet, I have always been extremely grateful for all the therapies and support offered through Early Intervention.  And, since the help comes in the form of Miss Lisa, we couldn’t be more blessed.   Sadly, as Jack approaches age 3, we will need to transition to the local intermediate unit for his services and say goodbye to Miss Lisa (professionally, but hopefully not personally).  To say she will be missed is an understatement and I think we are both in denial about this upcoming transition.  

Happy Meal Date

Happy Occupational Therapy Month! 

P.S.  After Jack’s first year with Miss Lisa, we made her a photo book of all of the progress he made with her help.

Click here to view this photo book larger

The new way to make a photo album: photo books by Shutterfly.