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?

A Micro Preemie Journey: A Grandma’s Story

“Micro Preemie wasn’t part of our vocabulary.”  Admittedly, they were prepared for an earlier delivery, as is often the case for twins, and they even knew there was a chance of bed rest due to recent blood pressure increases but mostly on everyone’s mind at the regularly scheduled MFM visit at 23 weeks was that they were doubly excited for two girls.  All too quickly, the excitement shifted to fear.  The visit turned to an admittance due to preeclampsia diagnosis soon-turned HELLP syndrome.

For too many of ANRC’s readers, this shift from happy-go-lucky to heart-stopping fear is all too familiar.  However, this isn’t the story of the parents of the micro preemie.

This is the story of the grandparent.

Last month I had the pleasure of talking on the phone with one of ANRC’s regular readers, Marilyn, who agreed to share her story.  I asked her to share because prematurity doesn’t just emotionally impact the immediate family.  It also impacts the extended family and, often, most notably the grandparents.  I also asked Marilyn to share because, just like many people say to me, “I can’t imagine how you do it”.  I sometimes think that way about the grandparents’ version of this story.  Not only are they helpless to what’s happening to their grandchild.  The grandparent is also helpless to making it better for their own – adult – child.

Marilyn described it so well.  She happened to be with on that visit during the 23rd week that went horribly wrong.  She said, “I went into that mode – she’s scared.  As a mother, I was worried, but I had to stay calm.”  I haven’t met Marilyn in person, but I could tell from our phone conversation that she is a master of remaining calm on the surface.  At the same time, I could hear the fatigue in her voice as she shared that day with me.  “Indescribable,” was her word.  Sitting in that waiting room.  Making phone calls notifying friends and family of the turn of events.  HELLP is a very serious medical condition – Marilyn’s daughter’s life was in immediate risk.  At the same time her two granddaughters were coming into the world at just 23 weeks.  “You try to be happy and joyous, but at the same time, I have three loved ones in the ICU.”  Marilyn says she felt fear and anxiety more than immediate joy.

Unfortunately, on the same day when there should have been relief at her daughter’s recovery from HELLP and discharge from the ICU, one of the babies passed away.  “And then we were planning a funeral”.  The words Marilyn spoke were simple and straightforward.  However, the weight of them were enormous.  As I write this a month later, I can hear her say those words.  Her voice was even and clear, but I can feel the pain 1000 miles and a month away.

And just as suddenly, Marilyn’s tone changed, the pain was pushed aside and she was back to matter of fact.  There was still a surviving baby, who was only 15 oz at birth, and her grieving mother to worry about.  Marilyn didn’t have time to process what her family was going through.  She had to keep staying strong so she could help ease the burden.  Marilyn visited the hospital daily to support her daughter and also she helped with logistics to ease some of the pressure on the family.

After more than four months in the first NICU and failed extubation, the baby was transferred to a NICU 2 hours away where she stayed for another 5 months.  Marilyn’s daughter and husband needed to rely on her to manage more of their household needs.  She did the grocery shopping, took care of the cat and every night … waited for a phone call to hear how her daughter was doing.  Of course, Marilyn worried about her granddaughter, but she was also worried about her daughter.  She knew her daughter wasn’t eating or sleeping well.  The time away was especially hard on Marilyn, “[my daughter] was just recovering from this experience and I couldn’t be there to take care of her.”

As Marilyn described the helplessness of not being able to make things right for her daughter, I realized how much she truly understands the story of every preemie parent.  As parents we often feel like we’re supposed to come equipped with a magic power that makes everything okay in every situation.  When that ideal can’t be met, it’s excruciating.  We feel it as preemie parents and Marilyn proves it’s also felt as parents to preemie parents.

Also, like preemie parents, Marilyn admits that even though she has stayed strong to the outside world…and around her daughter… she reserves the right to meltdown with her husband.  Marilyn’s situation allows her to play a more physical role with helping her daughter, but she took special note that grandfathers are also deeply affected by the prematurity experience.  The emotional burden is shared by the entire family and Marilyn and her husband rely on each other as they both cope with that weight.

Now that her granddaughter has been home from the hospital for a year, Marilyn continues to play an active role in helping with day-to-day cares and errands.  At 19 months old, the baby has a trach and requires around the clock care.  When the nurse goes home, Marilyn does what she can to help.  With cold & flu season in full swing, Marilyn helps with grocery shopping and picking up medications at the pharmacy.  Things are improving, but there is still a lot of work to be done.

Marilyn’s pay off for the work that she’s done is the joy in watching her daughter love her own daughter.  Together they celebrate each milestone – signing “mommy” and “daddy”, knowing her body parts, cruising and walking with hand held assist.  Marilyn’s voice sang, as she talked about how well her granddaughter is doing.  While she admitted there is still crippling fears – especially tied to cold & flu season – she said she really tries to focus on how much fun her granddaughter is.

I love that the conclusion of our call was focused on the joys and loves of parenting and grandparenting.  Whether you’re parenting a typical child, a preemie or a parent of a preemie – it seems no matter how dark those darkest moments may be, it all comes back to joy and love.

Thank you, Marilyn and your family, for sharing your story.  You inspire me to be a better mom and to better appreciate our parents and all that they have done and felt through our own journey with prematurity.  I hope one day our paths will cross where I can give you a hug.   (Also, thank you for your patience as I took an unintended month off from blogging.)

Dealing with NICU Parent Survivor’s Guilt

I’ve struggled with the decision on writing about NICU survivors guilt because it always felt a little disrespectful to those that did lose a child in the NICU.  There is part of me that says, the loss of the child is the only emotion that deserves to be addressed.  But the feelings are there and I guess I need to say it out loud (in the written form) because I’ve never said it.  I have heard it once out loud, and it was really helpful to hear.  Now it’s my turn to say it, because maybe someone else needs to hear it.

The thing about the NICU that is most cruel is that there is no predicting who will go home and who will not.  The fact is the great majority do go home.  Still, way too many do not.

The only time I’ve ever had someone put the complexity of emotions that I felt around the loss of a NICU baby was the hospital chaplain when he stopped to see how Owen and I were doing the day after one of Owen’s roommates passed.  I brought up the baby’s loss and we both stared at the newly empty bed as he said, “it’s such a complex thing to deal with, being sad for their loss, for your loss…and especially one you got to know so well.  And then there is the reminder that it could have been you and the fear that it still could be you.  There is the guilt for thinking what you have going on is hard. You still have your baby.  And then there is guilt because you’re not really sure why it happened to them and not to you”

I wanted to be able to vehemently disagree.  Of course, I don’t feel all of that!  Guilt?  No, I can’t feel guilt that my son is alive.

In truth, I didn’t speak.  I didn’t have to because he said exactly what I was actively feeling and also the subconscious thoughts that I wished like hell I wasn’t thinking.  The only emotion that he missed saying was the relief that I had in someone saying so clearly what I was thinking…to kind of make it okay that I might feel guilty for their loss.

If you are reading this and you have lost a child and you’re thinking, “this is all very sick.”  I want you to know I feel that way too.   I’ve written about it a lot in my personal journal because, I wanted to understand it so I could move away from the icky feelings of guilt about this guilt.

The more I process it, I’ve come to the conclusion that guilt is the wrong word.  As I peel back the layers of feelings, what I’m starting to conclude is what I really feel is great confusion.  I think about looking around that NICU nursery and thinking, “How is it all decided?”  Who goes home and who doesn’t?  The randomness of one day a baby seems to be making great strides and the next day, they are gone.  That it seems your son is sicker, but somehow he’s still here and the other babies are not.

Why???

How is it decided??

Why do babies, children, loved children have to die?

I’m not really looking to turn this into a theological discussion.  My beliefs and your beliefs, whatever they may be, are valid and we all find our ways to cope with these questions.  But the fact is, for the most part, it seems it doesn’t matter what people’s beliefs, these questions seem to come out at some point.

I guess overtime the guilt has diminished.  I’m still confused – but at least I’m doing a better job of identifying the emotion as confusion and not guilt. For me, with time, “it’s just the way it is” is my way of beginning to hmmm…it’s not really accept….but acknowledge the reality of it maybe.  It has occurred and it is just the way it is and nothing will change it.  It still crops up but now it’s less in the form of beating myself up that my son is here and their son is not.  Now it’s more times when I stop and realize that I’m sad that there are babies missing from the picture.

We had a play date last week with NICU friends.  In a picture, we got three amazing boys who combined spent more than 22 months in the hospital and 6 years on oxygen/vent.  It was a joy to see how they are all thriving in their own ways.  As I looked I couldn’t help but also know that one of those boys had a twin sister that passed before birth and the other had two brothers who lived one and two days.  And then there was the other little boy who was in the hospital with these three and he passed away at 7.5 months.  Our picture of three…it should have been seven.

I missed them in the picture.  Those four…and many others…  I’m not sure why the three survivors are the three that survived.   It’s not really something I’m currently able to come to terms with, but I will remember each that didn’t survive and I will never stop celebrating those that did.

Two Years Home From the NICU

Today is the two year anniversary of Owen’s home coming.  We stopped down to the NICU today to say hello.  Everyone was thrilled to see how big and strong he’s gotten.  He walked all over and gave lots of air kisses.  Here’s the note that we left for them with this quote that I thought was the perfect way to say thanks to a NICU staff, “To know even one life has breathed easier because you have lived; This is to have succeeded”.  Ralph Waldo Emerson.

Thank you NICU

Each Parent Has His/Her Own Course Too

I’ve met several families who have had preemies with similarities to Owen’s course.  But I’ve never heard of a story exactly like his.  That’s not because Owen is some sort of special case, it’s because EVERY preemie is a special case.

There are no two preemies exactly alike.  The course of Ailyn does not predict Virginia or Charlie’s.  The course of Jack does not predict Owen’s or V’s or Boy Boo’s or Tucker H’s.  Not even twins, like Destroy & Search or T & K, who have the same parents and same length of time in the womb have the same course.

The same is also true for any type of special needs.  Kerry’s Cerebral Palsy is likely different from Max’s Cerebral Palsy.  Girl Boo’s undiagnosed special needs don’t look like Tucker C’s who has a kind of sort, maybe, not quite exactly, but a lot like diagnosis.

I know you know that every child – special or typical needs – has his/her own course.  It’s not always easy for us as parents, but as a whole, I feel like this community really does a great job of giving our kids permission to end up in different places.

Where I would argue we don’t give that same permission is with ourselves.

It’s an interesting perspective being a blogger who is really open with her emotions through all of this.  After two and a half years, our family is finally settling into some sort of groove.  We are forever changed, but we are getting to a place that is more about moving forward and hope and  joy and less about living in constant fear and simply thinking it’s a good day when all the meds and feedings were on time all while trying to figure why/how could this happen?.

Some families are wondering what took us so long to get here.  Others are wondering how we could be here so soon.  Just like our kids’ course and outcomes differ, the parent course and outcomes differ.   And it doesn’t have anything to do with the course of the child.  My husband, Kyle, and I have completely different perspectives on much of what happened.  We have the same two preemie children and each experience effected each of us differently.

Just because I went back and toured the NICU, doesn’t mean that I think everyone should.  In fact, my husband would probably rather do just about anything than to step foot beyond those doors again.  Just because I choose to believe that there wasn’t a reason for any of this happening and that it’s just what happened.  Doesn’t mean I don’t respect people who do feel this was part of God’s plan.  Just because writing a blog that details every negative and positive feeling I have had on this journey works for me, doesn’t mean it’ll work for everyone…notice, I don’t talk much about Kyle on this blog?  He knows it’s what I need and he respects that.  I know he wants to keep his path private and I respect that.  Same kids, same courses.  Different outcomes.  Both outcomes are okay.

Maybe I’m over thinking it, but I’ve received a few comments and private messages lately that made me think that my sharing where I am, made others feel bad about where they are.  No one has come across as angry at me for sharing what I’ve felt, but it has seemed a few times, they have been angry at themselves for not being in the same place that I am.  If you fall into that camp; I am sorry.  It is never my intention to make someone feel bad (unless you gave me crap about being asked to wash your hands in my home).  I do not think that my thoughts and experiences represent everyone.  I’m only sharing because 1) I have this inner need to share this experience.  I know no other way to try to make sense of it all  2)  I still find the time to share because if every once in a while it makes other people feel better about their own experience, it’s worth the effort.

Most of the readers of this blog are preemie or special needs families.  We are all brought together by what we have in common – beautiful kids that didn’t have the expected course.  I love having this group for that support and also want to remind everyone that your perspective is not the same as mine, or each others on every point.  That’s okay.  We can still join together to remember those who had much too short of courses, encourage those still on an unexpected course and support each other as we heal.

Just like our kids,we parents have our own course too.

PS – check out all the links to see more inspiring preemie and special needs stories.

Going Back to the NICU

The automatic doors swung open.  As I walked through I hit the smell like a brick wall.  Some things were different… The family room has moved.  A storage room was turned into a private nursery.  But the smell.  That damn smell.  I think it’s permanently in some of my sweaters.  I wonder, two years later, have I really washed that smell out of my skin?

In reality, I was on a tour with several other families who were joining the NICU Parent-to-Parent team.  In my mind I was on a solo trip from hell down memory lane.   First on the left, just past the former family room.  In that storage room turned nursery – I saw myself sitting.  A kind nurse let us sit in there while Owen was having his intestines reattached.  For 6 hours I stared into space, music blaring in my ears, looking at no one, just silently praying and occasionally reminding myself to breathe.  That morning we were surprised to learn that they surgeon wasn’t confident Owen could tolerate the entire procedure.  This may be only surgery one and there may be a need for others.  I also knew that Owen was at risk of going into liver failure if he couldn’t get off TPN – he needed this procedure so he could transition to food and his liver could heal.  I saw myself as I sat and stared and silently pleaded.

The next door on the left is nursery 7.  It’s the newest nursery and is the most spacious for the families and there are windows.  It’s kind of like the NICU version of a luxury suite.  Owen spent most of his last two months in there.  His buddy W, who spent 9.5 months in the NICU before going home with a trach was the king of the NICU in bed 7A.  Owen, the 3rd and then 2nd oldest in the NICU, was at the other corner of the room at bed 7D.  Those two boys kept their nurses on their toes.  Those last two months in the NICU were complicated, they were not feeder grower days for us.  As our tour walked by nursery 7 and I looked through the window, I saw myself hunched over Owen’s crib crying with fear that we’d never go home.

We walked past nursery 6, Owen had a short stay in that room.  It’s the biggest nursery and meant for the feeder-growers.  We were pretty promptly upgraded to the suite of nursery 7, which was really just a nice way to say, “your kid is too complicated to be in a room that needs the nurses to be 3 babies to each nurse”.

October 16, 2011Just past nursery 6 are the boarding rooms.  The first boarding room on the right made me smile.  It’s where we had our last weekend in the NICU.  Kyle was out of town so it was mainly me and Owen and a stream of visits from my closest friends.  As we walked past, I saw me taking a picture of Owen finishing up his car seat test.  He was starting to look so good, I was cautiously full of joy.

As we approached the next boarding room on the right, I averted my eyes quickly, but not quickly enough.  I saw me laying in the bed in the fetal position pleading for my son’s life.  And then I saw the eyes of the fellow who knocked on the door in the middle of the night to let us know there was grave concern.

Our group headed back down the hall, everyone was essentially silent.  We paused to hear about some changes to the rounds logistics before we headed back to the level III nurseries.  In the hallway outside nursery 5, I saw myself hugging my friend (who at the time was a stranger) after she told me she lost her daughter the day before.

And then our tour guide asked, “which nurseries were your kids were in?”  As everyone answered, I stared at the back (exit only) door of nursery 2.   I saw myself slipping out the door, trying to hold back the tears.  I’m not sure which incident I was seeing, that happened all to often.  I then gave my answer,  “2B.  Exactly 100 days”.

I was snapped out of my private thoughts when my friend, who was also on the tour said, “…and then we moved there next!”  The tour was coming to a close and hearing her voice was a reminder that good things came out of the NICU too.  I won’t go as far as saying fond memories…not even close…but, I don’t know…perhaps…hopeful friendships.

Whether you’re a lifetime friend, a NICU friend or an occasional  ANRC reader, thank you for being one of the friends willing to face the memories head on with me.  Because let’s be honest, the memories and hurt are there with or without the sterile smell of the NICU.

Born Small. Always a Giant.

Dear Owen,

GG_FB_LogoYou were born small.  Tiny really…just 800 grams.  Unlike most people, when  you were born you weren’t wrapped in a blanket and cuddled and nurtured until you got bigger and stronger.  Instead, you had to fight with the strength of a giant.  And with what strength you fought; your survival and recovery from the devastating complications of your premature birth was nothing short of miraculous.  Over and over in your life, medical professionals have marveled at your sheer strength.  You were tiny, but you were already a giant.

I’m not exactly sure if it’s just who you always were meant to be, or if there is a relationship to how close to death you were, but Owen, you are one of the people in the world who have a special magic about them.  I think deep down, regardless of your conscious comprehension, subconsciously…deep down in your bones, you seem to understand that life is a gift.  You exemplify joy.  Your smile makes other people want to smile.  Your accomplishments makes the world cheer.  You are small…smaller than average, and still only two and a half years old, but you are already a giant.

I don’t tell you that you are giant to give you a big head.  I tell you because I need you to know that not everyone will like that you’re a giant.  Maybe they too were once giants and someone cut them down, until instead of being a giant they are now a bully.  These bullies, Owen, they will miss your joy and all that you have accomplished and they will focus on your differences.  It breaks my mom heart to think of it, but these bullies will try to hurt you with words and maybe even bruises.  They will try to shrink you down until you are no longer a giant.

Here’s the the secret about being a giant, Owen.  Nobody can shrink you.  The only way that you stop being a giant is if you give your giant away.  I once gave my giant away.  I felt very small, and even when there were no more bullies around to make me still feel small, I still bullied myself.  You see, when you give your giant away, it means you believe you’re as small as the bullies tried to make you feel.

Do you want to know how I got my giant back?  You.  You helped me get it back.  You showed me how to be a giant again.  Yes, you were tiny and so fragile I couldn’t even hold you, but you showed me how to be a giant.  That’s the other secret about being a giant, Owen.  When you’re a giant, you help other people be their own giant.

As a giant, you build people up, instead of trying to cut them down.

As a giant, you stick up for those that can’t stick up for themselves.

As a giant, you let bullies know that what they are doing is not okay.

Being a giant, isn’t for the faint of heart, Owen.  In truth, it can be scary at times and feel very lonely.  Sometimes, the words that are used to try to cut you down will hurt.  I’m not asking you to think it shouldn’t hurt.  There will be wounds.  I will be there helping you heal those wounds.  I will do my part to remind you that you’re a giant.  You will always be my son and I will always do what I can to protect you.  But at the end of the day, it’s up to you. You have to choose to be a giant.  The good news is, you have everything you need, because no matter how small you once were, you were born a giant.

This post originally appeared here on www.raiseagiant.com. As part of National Bullying Prevention Month, Green Giant in partnership with the Pacer Center, a Minneapolis-based non-profit that supports families of children with special needs, is asking you how you plan to raise a giant.  Won’t you join me in writing a letter to your child?  Simply click here and write and share to help raise awareness of this important cause.  If you have children, please see the student-to-student curriculum developed by PACER’s National Bully Prevention Center at www.pacer.org/bullying/wewillgen.  When you write your letter, please, share a link in the comments, I’d love to read it.

 

 

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 truth behind happy tears

Sometimes, it’s the happiest moments that remind you what you’ve been through.  In many ways, that’s a good thing, right?  You really take a moment to take stock in what’s been overcome and celebrate progress.

At the same time, that taking stock in what’s been overcome is bitter-sweet.  Sometimes it’s easier to not focus on what’s been overcome, because damn, really thinking about what has been overcome is downright overwhelming.  Literally, I’m not sure how Owen survived.  Figuratively, I’m not sure how the rest of us survived.  The what ifs, they piled and piled and piled up and felt like the weight of the world.

Today Owen kicked one of those weights to the moon.

Today are happy tears.  Amazing tears.

I’m kind of a wreck.  I wish I was there to have witnessed it myself, but am so happy that his teachers got it on film. I have work to do, but I can’t stop hitting replay.  I can’t stop the tears from coming…because really, it’s a deep exhale of a breath I kind of forgot that I was holding for these last two and a half years.

He was too tired tonight to show me much in person.  He gets tired with walking, but he can do it.  He can do it.

 

Special Needs & Working Mom – How’s it Going?

The fact that October is just around the corner seems a little crazy.  I’ve already been working two months and our family has pretty much settled down into our new routine.  I realize I’ve not really updated about how the transition has been going. In truth, I have about 10 half-completed posts just waiting for me to finish. I still think about writing a lot, it’s just been a little more difficult to finish writing what I am thinking.

I have so many topics coming up – like, my first venture behind the secure doors of the NICU since just after Owen came home.  Very surreal. Oh, and it’s almost October so some of my favorite preemie topics are constantly on my mind.  Cold & Flu, hand washing and vaccinations.  Don’t even get me started. (That’s right, this is me, the hand washing princess/queen/nazi).  There also was the little boy in Kellen’s class that momentarily broke my heart with his comments about Owen.  That was a hard mama bear roar to suppress.   I’ve started writing about the guilt that comes with holding your kid down for medical procedures.  It never gets easier.

As you can see, and as many of you live, working a job outside of the home doesn’t mean life as the mom to a special needs kid has ended.  Now, I’m both.  Career mom and Special Needs mom.

I’m not going to lie.  I’m loving it.  For me, dedicating time to my professional life has been refreshing and healthy.  We also have been incredibly blessed with how things have worked out.  I found a job that gives me the flexibility to go to Owen’s doctor’s appointments.  Seven specialists adds up to a lot of doctor’s appointments.  We also found the right help.  Owen’s nanny takes him to all of his therapy appointments, each of the therapists has called me to tell me how pleased they are with her.  The biggest sign is that Owen’s development hasn’t missed a beat with the transition.  He’s really doing well with “La-la” (his name for the nanny) and barely seems to notice I’m not home (which admittedly is both a good and hard thing).

Kellen’s had a little harder time with the transition.    In the same month that I went back to work, he also was moved to a new classroom with new teachers.  He’d been lucky enough to stay on the same teacher’s roster for 3 years in a row and we knew he needed to move on to another classroom, but it was just one more change for a little boy who doesn’t have a lot of history with “good” changes in the life that he can remember.  There were several days that I cried on my way to work after seeing him so sad to see me leave.  Finally this last week was the first week that he didn’t cry any of the days. Over the last couple of months, he found every opportunity to test my love for him.  I had to constantly remind myself to stay calm and remind him that I love him through his best 4.5 year old battle of the wills.  We talked a lot about my going to work and he admitted that he feared my going to work meant I wasn’t coming back.  Nearly two months in and I’ve come home every night.  He’s starting to get more secure.  The best thing for him was when I took him to my office.  It seemed to really help him see where I work and he loved that you can see the Twin’s stadium out one of the windows (something I had never even noticed).

He also tested the nanny.  She’s a mom and a seasoned care provider and, finally, Kellen is realizing that she cares about him too.  Yesterday he called me by the nanny’s name.  I’d been told it would happen and I expected it to really hurt.  Can I confess, it didn’t hurt?  It made me really happy to know that he clearly trusts her enough that he’d get her mixed up with me.  I know that probably sounds a little silly, it’s just that to me, his calling me her name didn’t mean that I’m less of a mom.  It just meant that when I’m not with him, he still feels safe.

So, that’s how it’s going so far.  It’s good.  Really good and just like everything in life, it’s taken work and adjustment and it hasn’t come without tears.

In case you wondered, the boys are still cute too!

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Something pretty big happened…

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He tried really hard to be brave.

20130929-221127.jpgBut don’t worry, the curls and the smiles are still plentiful.

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