Preemie Premonitions

I was standing in front of a room full of people, presenting my latest project at work.  I was wearing tan pants and I looked down to see bright red blood soaking through them.  I tried to turn my body, hoped that no one saw it and continued on.  As quickly as I could, without being obvious, I finished up and sat down in the back of the room as the meeting adjourned.  Sitting back on my tail bone, not wanting any more blood to soak through.  I was supposed to meet with a small team next, so I wrote to the organizer who was sitting next to me.

I can’t meet.  I have to go home.

 

She knew me pretty well – considering I’d only been at the company a couple of months.  She whispered back to me, asking what was wrong.  I tried to not respond, but she was insistent.  Finally, I wrote again.

I am pregnant and I’m bleeding.  A lot.

 

I could tell she instantly regretted asking.  I sat in the meeting, watching the final minutes of the meeting.  As soon as the meeting was out, I positioned my notebook in front of my waist and rushed to the bathroom.  This was the third week in a row that I’d had bleeding.  I was 7 weeks pregnant and had already had two ultrasounds.  I knew something wasn’t right with this pregnancy.  As I observed the amount of blood and saw how much worse it was than the previous weeks, I tried to keep myself pulled together.  Untucking my shirt to cover my pants, and finding a pad to keep it from getting too much worse, I rushed to my desk and put on my coat.  My boss already knew I was pregnant, because I had to explain my pasts absences the two weeks prior.  I just simply said, “I need to go.”  He asked if I needed a ride.  I said no and was off.

I had already been to the doctor twice, so I knew the drill.  If I was miscarrying, they wouldn’t be able to stop it, so there was no point in going to the ER.  I went home and cried all night.  Kyle came home and held me.  I was positive there was no way I could still be pregnant with all the blood I was still losing.     I finally fell into a deep sleep, fatigued from all the crying.

As I slept, I dreamed in techno color.  In the dream, I was holding Kellen and we looked down at a baby.  A boy.  He was nearly bald, with fine golden hair, I couldn’t tell if it was red or blonde.  He looked much like Kellen had, but different.  His head shape was slightly different and there was something else.  I couldn’t put my finger on it – the baby was so still.  Something wasn’t right.  I had always felt he would come early, with the dream I knew he would…earlier than Kellen.

More than anything, I knew I was still pregnant.  I like to think I’m a rationale person and that a dream is just a dream, but I knew that dream meant something.  I was giddy on my way to the ultrasound the next morning.  I think Kyle thought I was crazy to be in such a good mood after being so certain I’d miscarried less than 8 hours before.  I nearly sang the words, “I’m still pregnant.  It’s a boy and I saw him!”  and I proceeded to describe the future Owen to Kyle.

As happy as it made me in the moment, that dream haunted me for the next 17 weeks of my pregnancy.  There was something wrong.  What was wrong?  I kept replaying the dream in my head, watching him to see if he was breathing.  I knew he would be born, but I wasn’t really sure if he was alive.

Only a few months later, I stood over Owen’s NICU bed with Kellen in my arms and I realized I was living the moment my dream predicted.  The dream left out the ventilator and myriad of cords, but there lay a very still baby Owen while I faked calm for Kellen – searching for signs to see if he’d live.

I’m not sure of the purpose of that dream; if it was a warning or a way for my brain to start working on the unimaginable events to come, or just an odd coincidence, but it seems I’m not alone.  I’ve heard of so many others who had premonitions…did you?  What did the premonition mean to you and how do you think doctors and patients should differentiate between normal pregnancy jitters and true intuition?

Choosing Emma: When your Baby Falls between the Cracks of Viability

In the world of prematurity, each hospital sets its own rules of when they will resuscitate and when they won’t.  Some cases aren’t exactly clear cut and the doctors leave the decision to the parents.  Here is one of those stories shared by my friend Rebecca.  Grab a tissue and be prepared to cheer for the amazing Emma and her family.

Two years ago, I had no idea that there were limits to the viability of a baby. Well – I probably knew there were limits, but thankfully had no reason to a) know what those limits were and b)apply them to my own life. And then my water broke at 22 weeks and 3 days gestation.

I knew that waking up in a puddle in the middle of the night wasn’t a good sign. I knew that halfway through a pregnancy probably wasn’t far enough. I knew that when the nurse questioned me four times about EXACTLY HOW FAR ALONG I was it probably wasn’t a good sign. And I knew that immediate transfer by ambulance to a hospital across town with a Level III NICU wasn’t going to be a soothing ride.

I can remember quite vividly looking out the back door of the ambulance as we pulled away and seeing my husband James walking out of the hospital to our car with a plastic bag of my wet clothes and being so scared that something would happen before he caught up with me at the new hospital. I couldn’t fathom, at that time, the decisions that would lay ahead of us regarding this baby kick, kick, kicking like mad in my belly.

To back up a bit, it was on our older daughter Madilyn’s second birthday that we found out I was pregnant again. I had had two early miscarriages in the past, but we had no reason to believe after the 12-week mark that this pregnancy would be anything but normal. And by normal, I assumed I’d gain the SAME 60 POUNDS I had gained with Madilyn. Ice cream and I are BFFs.

Around 17 weeks, I started having intermittent spotting. We had numerous ultrasounds done and no one could find the source of the bleeding. Since it wasn’t affecting the baby we all assumed it was just going to be a nuisance throughout the entire pregnancy. I’d actually seen my OB just hours before my water broke spontaneously. I commented to the input nurse at the hospital that maybe my body had taken me seriously when, as a teenager, I had sworn I’d be done having kids by the time I was thirty (my thirtieth birthday had been two days before).

So here’s the thing – James and I found out pretty quickly that the difference between 22 weeks gestation and 23 weeks gestation is whether or not your baby can be resuscitated when it’s born. At our hospital, babies born at 24 weeks gestation are automatically considered viable. At 23 weeks, it’s up to the parents to decide how to proceed, so a pretty major decision now rested on our ill-equipped shoulders.  We were given some awful facts – at 23 weeks, a baby has only a 2-3% chance of having totally normal development. At 24 weeks, that increases to 15%. The list of potential problems was staggering. Did we want to have the steroid shots to help improve lung development at the soonest available opportunity, or wait until I was closer to 24 weeks? What did we “feel” like baby would show up? Were we prepared for a long stay in the NICU with potentially devastating results?  Did we think our baby was strong enough to survive at 23 weeks?

Sitting there listening to all the facts and figures was shocking. In 6 hours, we went from assuming I’d have a normal, 40-week pregnancy to deciding what kind of life-saving measures we wanted the staff to take on our baby’s behalf. If I went in to labor in the next three days, they would simply place her in our arms and we could name her and hold her and love on her for as long as she was with us. On day four, the decisions were up to us.  Did we want to let baby go at 23 weeks and just hold her when she was delivered? Did we want the staff to pull out all the stops to keep her alive, and to what extent? Heroic measures? How long should they try if she was failing? What if things were okay at first but not later? This baby was kicking like mad (in far below the “ok” amount of amniotic fluid, which was still running out), but the ultrasound suggested that she might be slightly bigger than expected…which was the open door we needed. But it’s not like James or I are extraordinary people (we are, in fact, horribly average) – how tough was this kid gonna be??

Turns out: pretty damn tough. Despite being born at 23 weeks and 1 day gestation, littleemma3 Emma Sue was nicknamed “Feisty” within the first hour of her birth and lived up to her name time and time again. James and I had decided, given all the information we could gather at the time, that with our personal beliefs and the support of our families we were going to give this kid every opportunity we could. We also hoped and prayed that if we were making the wrong choice, it would become clear to us and we’d be able to adjust accordingly. Thankfully, we never had to make that heartbreaking choice. Our doctors supported us 100% and never questioned our decision (for which I am unendingly grateful). Our 133-day NICU stay had its fair share of tougher than tough times, but Emma pulled through over and over again.

micro preemie outcomesAnd now? Now we can’t even fathom our life without this kiddo in it. She truly knows how to light up a room and brings a smile to the faces of everyone we encounter. She fights with her big sister, says “no” and “mine” more often than not, and screams when she doesn’t get her way – just like most two-year-olds. The feistiness that kept her alive two years ago keeps James and me on our toes. Every. single. day.

Parents make decisions on behalf of their kids all the time and we made our choice based on the information we had in front of us at the time. James and I continue to make decisions that way (even though I’d MUCH rather have that crystal ball to tell me how things turn out – so much easier to know that you’re on the right path!). I continually look at Emma and think – what if I hadn’t gotten the steroid shots at the first available opportunity? What if she had shown up when my water broke, instead of five days later? Although time starts to heal those wounds, the week between my birthday and her birthday will always be shadowed, despite the fact that it’s the highlight of the summer. I’ll never forget being on bed rest with the huge elephant in the room – when will this baby show up? Waiting for viability will always be remembered as the longest four days of our lives.

emmabecca

 

Thank you, Becca for sharing your story.  I can only disagree with one thing.  You and James are anything but ordinary!  I’m proud to know and be your friend.

The Preemie Parent Curse: The Known Unknowns

The question that many preemie parents hate most, is the question those same parents are always asking doctors; “But, he’s going to be alright, right?”

In reality, no parent knows how their child will turn out.  Many seemingly “typical” babies go on to have special needs like Cerebral Palsy, Mental Retardation, Learning Disabilities, Autism, ADD/ADHD, Obesity, Hearing or Vision loss and on and on.  “Typical” babies, as we all know, can also die from many causes.  There are no guarantees, regardless of the heath or gestation your child was born.  However, the difference between being the parent of a “typical” baby and a preemie, especially the extreme and micro preemies, is your chance of any or many of these issues effecting your baby are significantly increased.  Even with both of my boys being premature, with Kellen, I’ve always assumed he’d do what most kids do.  With Owen, there are no assumptions.

It was last May at Kellen’s end of school year party that these unknowns hit me hardest.  I saw a video of all the fun things the toddlers did over the year – dancing, painting, singing and having so much fun with friends.  What should have been a really special moment celebrating Kellen and his school friends had me in tears as I watched.  All I could think was, “please God, let Owen have these same opportunities.  What if he doesn’t get this too?”  As the parents around me slipped small tears of, presumed, happiness.  I silently sobbed.

I’ve since been coming to terms with the unknowns with Owen, but it’s something I work on every day.  I focus on what he CAN do.  I take pleasure in seeing doctors surprised at how good he looks and I take comfort in his easy smile and diligent work ethic.  I control what I can – my staying at home with Owen and our still sending Kellen to school is partly because we want to give Owen the one-on-one time that will help him in his development.  There is proven data that children with PVL (the name of his brain damage) who are higher in birth order do better than those later in birth order. I ask questions, I study what PT/OT and Speech are doing with him.  I push for new/better/more frequent help when I think it’s needed.  I push Owen, but also encourage and celebrate each step he makes.  I’m sure I make mistakes, but I work hard at being Owen’s best advocate.

Even with that said, staying positive is something I have to continue to work on because the risks are very real for babies like Owen.  When they are born, It starts with, “will my baby live?” and each day you get further away from birth you get more and more confident that your baby will be one of the lucky ones.  But I also know that any day can be a PICU day.

Shortly behind living are all the short and long-term special needs these children face.  Here are my really honest answers to many questions I get, and ask myself, about Owen.

  • What do the doctors say about his development?  – They say he’s behind
  • Will he walk? – I don’t know.
  • Will he run? – I don’t know.
  • Will he walk funny? – I don’t know.
  • Will he hear? – He does now, it’s checked frequently.  CMV hearing loss is progressive (gets worse over time).
  • Will he see?  – He does, but I still think he’ll need glasses for eyes crossing
  • Will he outgrow his asthma? – I don’t know, he has family history on top of personal history.  He may have been asthmatic even if he hadn’t been born early.
  • Will he outgrow his tracheomalacia?  – I don’t know.
  • Will he always need oxygen? – I doubt it.
  • Will he outgrow his allergies? – I don’t know, probably not all of them
  • Will he always need his g-tube? – I don’t know, I suspect not
  • Will he talk? – I don’t know.  He’s finally started coo’ing, I’m getting more hopeful
  • Will he always have a raspy/quiet voice? – I don’t know, probably
  • Will he always have that big bruise on his wrist?  I don’t know, it may get lighter
  • Will he have a normal IQ? – I don’t know, he’s tracking better cognitively than other areas
  • Will he have learning disabilities? – I don’t know, on top of the preemie risks, they run in my family
  • Will he have behavior problems? – I don’t know, they seem to exist in most families
  • Will he be autistic?  – I don’t know, preemies are 5 times more likely
  • Will he have a sensory disorder?  I don’t know, he’s easily overstimulated but not as extreme as what I’ve heard of with other kids.
  • Will his teeth come in fluorescent green? – Oh man, I hope not.  It’s a risk with heavily medicated neonates.  Especially those who had extreme jaundice like Owen.
  • He has brain damage, what does that mean? – It means parts of his brain don’t work.  He may or may not be able to compensate with the other parts of the brain, it’s too soon to tell.  The damage is in an area that many pathways come together so we don’t know what type of skills it may affect.
  • Will he be alright? – I don’t know your definition of alright, but we are working to give him his best chances to be the best Owen he can be.
  • When will you know?  – On most things, by the time he’s 3-5, some things are closer to 10.  Then again, I’m 35 and sometimes still wonder if I will turn out all right.  It’s an ever evolving question, no?
I’m sure I missed several, but I’ve already belabored the point.  There is so much that we don’t know.  And these aren’t just will he be a Doctor, Artist or Police Officer.  Many of these questions are fundamental skills that will impact Owen in every aspect of his life.

I remember being really frustrated with the doctors when they gave me similar answers to the above.  No empathy, direct and matter of fact (take away the calculus and cadavers and I’d have made an excellent doctor).  But I’m slowly starting to get it.  First, it’s impossible to know.  More importantly, questioning his potential does nothing for Owen.  It’s about giving him the opportunity to shine.  It’s not about being jealous of the kids that can or the parents that don’t have these worries.  It’s about taking a lesson from Owen;  Smile frequently.  Work hard.  Breathe.  With that combination, you can accomplish just about anything.

A Preemie’s First Birthday: Mommy’s View

As we neared the days before Owen’s birthday I was struck by the juxtaposition of the emotions that I felt.  First and foremost were pride and joy.  The further we’ve gotten away from the NICU, doctors have been more and more candid that they weren’t so sure he would be with us for his first birthday.  Owen defied odds and expectations and has accomplished so much in his first year and he did much of it with a smile.  He’s done everything that’s been asked of him and inspired so many people.  I am both humbled by him and proud to be his mother.  At the same time, I am able to separate Owen and his accomplishments from April 21, 2011.

There are certain events in Owen’s life that I remember every precise detail in slow motion.  The smell and appearances of the room, the look of the doctors and nurses, what I was wearing, what was said…everything.  I call them my Techno Colored Memories.  The early morning of April 21, 2011 is one of those memories.

I remember calling the nurse to tell them I was having some symptoms.  I picked up my iPhone and looked at the clock, it was 3:22 AM.  I put my head in the pillow hoping they’d think it was nothing.  I didn’t feel contractions, but I didn’t feel great and hoped to get back to sleep soon.  Then I heard something being wheeled and several feet running down the hall.  3 women in scrubs entered the room with a sterile exam table.  One nurse demanded the evidence I reported.  The resident stood down by my feet, I could feel her eyes looking over my whole body assessing what she was seeing.  Another nurse hooked the baby monitor to my belly.  The resident checked my cervix and said “let me clean up and I will explain what I’m seeing”.  My heart sank, I knew she needed the time to collect her thoughts on what she was about to do and how to tell me.  When she spoke, she told me I was 3 CM dilated and I stared back at her with pure hate.  I’ve never felt that type of hate before. Just the day before, a Nurse Practioner from the NICU had sat down with Kyle and I explained that if we had a baby boy now, he had a 40% chance of surviving and even if he does survive, he will likely have long-term issues.  And now, how dare this woman be telling me I am in labor?  He’s NOT ready!  I am not ready.  She told me, “we will try to stop this”.  Minutes later, I was in the fetal position and my entire body was shaking.  I’m not sure if it was contractions, fear or anger but it doesn’t really matter.  It didn’t last long.  Less than 2 hours later, Owen was born.  The fear and anger were gone and I was just sad.  Sad that my baby had to do the fighting on his own.  Not guilty, just profoundly sad.

There aren’t many other moments of that day that I remember very well.  I remember the beautiful sunrise right after he was born, it was gorgeous golds and reds.  I remember seeing Owen for the first time.  I steeled myself, but am pretty sure my gasp was audible when I saw him – so tiny, eyes still fused, ventilator tapes covering most of his face.  I touched him and his skin was sticky.  I am not sure who the nurse was.  I can vaguely hear Jenny’s voice in my ear, but I can’t be certain it was she that morning.  After seeing Owen, I went back to my room and called my friend Sarah and cried as I told her Owen was born.  I remember being struck by the absurdity of people say “congratulations” to us.  Only one Doctor got it right, in my mind.  He had been the attending in Antipartum that week and he said, “I’m sorry we couldn’t keep you pregnant longer”.  I will never forget those words.

His sentiments are exactly why Owen’s birthday is bittersweet to me.  I am so happy to have Owen as my son, but I am really sad that April 21st is when he was born.  This year, as I celebrated my miracle baby boy and all that he has done, I also grieved the pregnancy I didn’t get to finish. I accept where we are and somehow believe I’m going to be a better person for it, but also wish he could have been my little baby, not my micro baby.

Left, Owen with Tatum’s hand April 21, 2011. Right, Owen and Tatum April 21, 2012.