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.

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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.

Defining Owen

I always seem to pick the slowest line at the store.  Yesterday wasn’t any different.  It wasn’t until I had everything out of the basket and on the conveyor belt that I realized the cashier was in training.  Not only was he painstakingly slow, he also didn’t respond to my repeated requests to please scan the boys’ baseball set and bumpy ball so they would stop asking for them.  Isn’t it in Cashiering 101 to appease all small children first?

The cashier who was doing the training sensed our impatience enough to try to keep us entertained.  We often hear the same things about our boys.  “Look at their beautiful red hair” and then “Oh, those curls!”  Owen knows this is for him and then he gives a cheesy little smile that says, “yes, I know I’m cute”.

I knew what was coming next.  “How old is he?”   But this time was different, before I could say anything, she and Owen spoke in unison.  Hers a question?  “Two?” and his a proud statement, “Two”.

I didn’t know which direction to target my beams of joy.  Towards Owen for engaging in the conversation without my coercion?  Towards this stranger who thought he looked two?  Or back to Owen for actually looking like a two-year-old?  Or, wait, should it be to the woman because she didn’t follow the question with a look that asked, “so…what’s wrong with him?”

It’s funny how such an innocuous question like, “how old is he,” can feel like a loaded inquisition.  I’ve posted in the past how I had stopped correcting Owen’s age long before doctors did. But, I will admit, I still often felt the need to explain.   I guess I never questioned that need, until in this instance, when I didn’t have to.

After confirming Owen was two, she turned to Kellen and asked if he was 5 or 6.  He beamed too.  She said she was surprised he’s only four because Kellen is much taller than her four-year-old.  You know, I didn’t feel the need to say, “he’s tall because I’m 5’10” and his dad is tall, too.”  I felt no need to explain something that is meant to be a positive.  I mean seriously, think about it, when your kid is said to be smart or attractive, do you ever feel like you need to explain it?  (It should be obvious it’s because they have stunning geniuses for parents).

Why do we (I) feel that we have to explain why our kids are less than average in something?  Owen actually is pretty big for a former micro preemie (~34″ and 24 lbs at 27 months), but his abilities are not that of the average two-year-old.  Yes, there are several reasons why Owen is where he is.  But (and it’s a big but), I feel like every time I explain that he’s amazing “all things considering”, I’m reminding him (and Kellen) that he’s different…in a less than way.

The truth is, there probably won’t be a day in his life that Owen won’t think about the fact that he was a micro preemie.  Even IF he gets lucky and is one of the few micro preemies that doesn’t have life-long disabilities, every time he looks in the mirror he’ll see scars covering his abdomen, on his back, on his neck and his arms and wrists.    Every time he goes to the beach or gets intimate with a girl (or boy), he’s going to be asked to explain.

Being a former micro preemie is a part of his story and I want Owen to be proud of how far he has come.  However, being a former micro preemie does not define Owen…and I never want it to be his excuse for giving up on his dreams.  Owen has the rest of his life to define who he is.  It’s my job to make sure that he understands his possibilities…not in spite of his disabilities…but regardless of them.

Thank you, Target Cashier Trainer-lady.  I needed that reminder.

 

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What’s Your Number?

181 Days, 11 Hours and 57 Minutes.

We all know the number of the days our child spent in the NICU.  Why is it so important?

When your child is fighting to live, each day matters.

Each day is a day he is alive.  It’s a day closer to leaving.

It’s a day that represents the fight.

It’s another day of hope.

It’s a unit of time that is tangible in a world that is foreign and surreal.  When time is moving so slow, it’s the biggest measurement we can grasp.

Each day is a reminder of the fragility of life.  A reminder of the miracle of life.  A reminder of what can be overcome.

Each day is a blessing and counts for everything.

What’s your number?

Owen, 2 Weeks old, eyes finally open

I Never Planned to Be a Stay At Home Mom

If you would have asked me all the possibilities of my future… I wouldn’t, in a million guesses, have guessed a stint as a stay-at-home mom would be part of it.

First, before the haters come after me, I must qualify that I have never seen anything wrong with being a stay at home mom.  My mom stayed home with us and I loved that as a kid.  She was a great role model and I’m proud of her and the way she raised us and cared for our home.  I have all the respect in the world for both choice and circumstance stay at home moms.  It just was never the path I imagined for myself…kind of like I never imagined myself as an astronaut.

Maybe it’s because I was the only girl in the family, or maybe it’s just innate, but I’ve always seen myself in leadership, or what was more traditionally considered masculine, roles.  In Kindergarten, I remember taking a field trip to the hospital.  At the beginning of the tour, each child was able to choose a doctor’s hat or a nurse’s hat for the tour.  With only one exception, every girl chose nurse and every boy chose doctor. I was the exception.  I was the sole female doctor and until my teacher, Mrs. B, pulled me aside to commend me on being brave enough to make my own choice, I didn’t even think anything of it.  I wanted to be the doctor, so that’s what I chose (I’m both proud as hell and often exasperated that Kellen inherited this same independent-minded spirit).

When I was six, our family took a trip to New York City.  I fell in love and knew I was going there.  The image I had in my head was of me in my business suit walking down the sidewalks of busy Manhatten with a briefcase in hand and going to my important office job in one of the towering buildings.  I never really had a princess stage.  No fluff, just streamlined silhoettes…like business suits.  It was the early 80’s so I’m sure the suit in my head had some fabulous shoulder pads.

Or maybe it was the 90’s version…

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I mean seriously, even in the 90’s who had their grad pictures taken in a business suit?  It’s probably the last time I enjoyed wearing a business suit!

In part, I wonder if I never imagined myself as a home-maker (or nurse or admin or insert any other stereotypical feminine role here) because I knew I’d stink at it.  When I think of the skills and traits that I imagined were important for a stay at home mom, I don’t excel at any of them.

  • Nuturing and snuggly:  I have a bad habit of laughing when people fall and hurt themselves.
  • Enjoys spending time with kids:  Truth?  Not really.  At least not 24/7.  Kids crack me up and are a lot of fun, but my patience with repeating myself is kind of extremely low.
  • A green thumb:  I can barely keep a plastic plant alive
  • Enjoys arts and crafts:  I like sewing, but not as an art-form, if that makes sense.  I like the idea of art, but my brain isn’t creative in the artistic way.
  • Home decorator:  I think it took 5 years before I got all the pictures on the walls in our house.
  • Cooking:  Hate it and stink at it.  Kyle still does most of it in our house.  When I do it, we sometimes are pretty hungry at the end of the meal.
  • Clean:  I grew up in a house of neat freaks.  I was the outlier.  I do not like dirt.  But I’m lazy about picking up… To this day, I don’t make my bed and clothes are often strewn on the floor of the bedroom.  That is, until I get mad about something or I’m avoiding something, and then I go into a cleaning frenzy and nobody is welcome to talk to me until you can eat off the floors, counters, sinks and toilets.

Truth be told, since I quit working and focused pretended to focus my energy on the home, it’s gone into a shambles.  I look around it feels like a tornado (particularly two strawberry blonde F8s) have come through and the city decided it wasn’t an area worth revitalizing.  (Seriously, why clean when you get one room done and it’s dirty again before you finish the next.  I know futile efforts when I see them…that is, unless I’m in the frenzied “zone”).

It’s Kyle who takes the brunt of my SAHM mom inadequacies.  He knew when he married me that I’d never make a good housewife.  If that’s what he wanted, he would have stayed far, far away from me.  I think he actually pities me a little.  It’s like taking a hibiscus and expecting it to thrive in the desert (or any plant and expect it to make it a week under my care).  Thankfully, he loves me and he probably has to remind himself daily that it’s temporary.

We are also pretty honest with ourselves that, even though I am at home, the house falls pretty far down on my list of priorities.  My job is to manage Owen’s health and development and, without trying to brag, I’m really good at it.

  • A strength of mine is talking to experts about really complicated systems and then simplifying them for everyone else to understand.  I don’t get overwhelmed by the realities of the below picture and I intuitively understand how each area affects the others.  I have zero interest or skill in biology.  This is just the way my brain works.  In the past, I’ve used the skill to understand food manufacturing systems, apparel construction and multi-million dollar marketing campaigns.  Today, I use it to understand a 23 pound little boy, who by even doctor’s standards, is pretty complex.20130619-152032.jpg
  • I’m also really good at setting goals and helping the team develop strategies to achieve them.  In my opinion, Owen’s doctors and therapist are consultants.  I’m the decision maker and it’s my job to accept or reject their recommendations.  That probably sounds cocky, but I call that advocating and trusting that I know Owen best.  They are subject matter experts, I’m the big picture, Owen, expert.
  • I’m also good at communicating and understand what pieces of information are important to which care provider  (we are down to 7 specialist, 8 therapist, a pediatrician, a respiratory therapist and lots of nurses).  I keep everyone in the loop and let them know specifically where I’m looking for help.  I make the most of each visit; I feel lucky to have really good providers on Owen’s team, but I also realize that it’s my job to help them do their job well.

I know, without a doubt, that I deserve an F grade in my home-making skills, and some days…especially over the last month, I beat myself up for it.  And by beat myself up, I don’t mean I take action…I get so overwhelmed by how bad I am at it that I curl up in bed and get lost in a crappy romance novel instead of dealing with the reality in front of me.  Many days, I feel like I’m out of my element and am completely scattered brained.

And then I take Owen to an appointment and my head clears and I recognize me again.  It’s in those moments, that I realize that I’m Owen’s mom for a reason and that just behind God and Owen’s natural drive, I know that I’ve played an important part of how well he’s doing today.

I take pride in knowing that I helped make this transformation possible:

transformation

Maybe in many ways I suck at being a stay at home mom…but, in this case, I know I am the best woman for the job.  I think the six-year-old me who dreamed of business suits and important business jobs in her future would be proud of where she is today…no business suit (or shoulder pads) required.

 

Owen’s (Third) Letter to Nasal Cannulas

Dear Nasal Cannulas,

It was two years ago on Father’s day that Dad and I were in cahoots and we pulled the ventilator out.  Okay, maybe it was a scary accident to Dad, but I knew what I was doing.  I was through with that vent…well, at least for a week and then I got sick and needed it back, but that’s not the point… the point is, I know when I need help breathing.

Over the last several weeks, I’ve made it abundantly clear to Mom and Dad that I didn’t need help breathing anymore.  I kicked and screamed the minute you touched my face and I proved I can whip you out of my nose and on the floor faster than I can crawl away when Mom is chasing me through Kellen’s floor hockey practice (and that’s pretty fast, just ask any of the onlookers who were giving mom the “wow, he’s a handful” looks of sympathy…hahaha).

I made it as clear as I could to Mom that it was time to call the doctor to have my overnight study, but she’s got this fear of bad news…something about being afraid of jinxing positive momentum.  I mean seriously, she gets all cautious because she’s haunted by that first year, but I keep showing her in every way…I’m just not that same kid anymore.  I’m stronger now and this face is waaaayyyy too cute for a harness on it.  Those dang glasses are bad enough and at least they match my baby blues.

So anyway, this letter is getting a little drawn out…kind of like our two-year relationship…so let me put it to you as simply as I can.

I PASSED!  I PASSED!  Naa Naa Nuh Boo Boo!  I don’t need you!

Oh, and to your little friend pulse oximeter (that stupid monitor that mom punched a time or two…or more).  I quit it too!

Booyah!  It’s good to be a free man.

If you missed Owen’s previous letters to nasal cannulas, you can find them here and here.

Finding the Words

I was working on a post today and struggled to find the right words to get to my point…truth be told, I don’t think I had really figured out the point yet.  It had a lot to do with the myriad of emotions and trying to not be overwhelmed by feeling so much all at once.  Maybe, I’ll get what I want to say figured out by tomorrow…but then I heard the perfect words.

It wasn’t my favorite post ever, but Owen woke up so I was proofing it to post.  He came over to my chair and grunted a little.

I looked at him and said, “do you want up?”

He shook his head “no”.

I then asked, “do you want to walk, walk walk?” which is what we say to go for hand held walks around the room – one of his favorite activities.

Again, he shook his head “no”.

“Well, what do you want to do?” I teased, expecting no reply.

I could see he was looking for the words and finally he said, “bye bye”.

I smiled and said, “You want to go bye bye?”

He got a huge grin and replied, “Yeh!” and then, “Go.”

So, maybe I didn’t find the perfect words for the post I had planned for today, but got something even better: Owen and I just had our first conversation.

And the boy has let me know, he wants to “go”, so we are going.

Probably to get Kellen, so Owen can sit in his favorite rocker in the classroom.

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The Truth About Prematurity

If you took a poll of the number one pet peeve of preemie moms (and dads), I bet “hearing women complaining about those last weeks of pregnancy” would be really high up there.

Personally, my gut reaction when I hear someone complain is, “I would take any…A-N-Y!!!…amount of pain and discomfort to not have had my kids in the NICU”. I also think about my friends who struggle with infertility and how they must hate to hear people complaining about the one thing, they so wish they could have.

At the same time, I try to be reasonable. In some ways, it feels like it should be a God-given right to complain a little when you’re pregnant. I do get it. Okay, well not fully, both of my kids were preemies. However, I remember being 34 weeks pregnant and thinking, “wow, I’m going to get 6-weeks-more uncomfortable than this?” It’s no secret. The last weeks of a full term pregnancy are a mess of raging hormones, fluid retention, heart burn, Braxton hicks and real contractions, stretched, itchy belly skin, bladder/rib/back pain, you can’t see your feet and even if you could, your shoes don’t fit and then there are the, very embarrassing, things that your body is doing.

It really is conflicting for me, because I know these moms are not hoping their kids will be born sick. At the same time, I know that too many people don’t understand the importance of those last weeks of pregnancy. They don’t imagine feeding tubes shoved down the baby’s nose and IVs sticking out his head. When they say they are, “over being pregnant”, they don’t mean they would rather have the baby and leave him at the hospital until he is ready to come home. Maybe these moms haven’t seen data, like shown in this 2010 CNN Article, that states that at 34 weeks the risk of respiratory distress increases 40 (FOURTY!) times. Even at 37 weeks, there is a 3 times greater risk for respiratory distress than those who are born at 39-40 weeks.

I’ve really worked on removing the emotion and instead, sharing support for those moms nearing the end of a full-term pregnancy. I focus on not taking it personally, but also consider myself an advocate for premature babies and their parents, so I can’t ignore the statement either.

Here was my comment to someone who was having a frustrating pregnancy day yesterday:

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The comment that followed mine was by someone I do not know.  Nor, do I ever need to know.

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What the…?!  Is she endorsing late term prematurity because her kids are fine?

There are a lot of misconceptions about prematurity, so I wouldn’t be surprised to see something like, “my friend has a preemie, he’s fine…” but this isn’t a “friend” situation.  This is a two-time preemie mom saying it’s no big deal to have a preemie.

I can’t stand cyber-wars and I had nothing nice to say, so I simply responded with,

You’re a very lucky lady, [her name here].

But, of course I stewed.  I’m not going to skewer the person who said these things.  That’s not fair, she’s not here to defend herself and I have no idea who she is.  However, I am going to say that her answer is the exact answer I expect to hear when I talk about prematurity to people.  No, I don’t normally hear it from other preemie moms, but the misconceptions for the general population are unreal!

Absolutely unreal!

I’ve had several commenters on ANRC tell me to not be so hard on people who seem to gloss over the risks for premature babies because it’s done with good intentions.  While I do understand that it’s good intentions and I am not a proponent of personally attacking someone for saying things like, “most of these kids turn out just fine,” I also believe in the importance of advocating for these children and their families by sharing the truth about prematurity.

I’ve had to learn…the hard way…the truth about prematurity.  I know what prematurity looks like in its best cases and what it looks like in the worst cases.

I have a brother who was a preemie and a mother who has struggled with the guilt that she felt for his early birth.  My earliest childhood stories were about my mom going into labor with me at 31 weeks, but in my case, they were able to stop her labor and she was on bedrest for 6 more weeks.  I can see the vast differences in my childhood and adult life versus my brother’s…much of that due to me being lucky enough to have been born after he and so my mom was watched much closer.

I understand the deafening silence as you wait to hear your 34 weeker cry.  I have felt the frustration of being a mother, but not being able to decide when you can and cannot hold or care for your child.  I’ve lived the loneliness of leaving the hospital while my child stayed.  I have a reoccurring nightmare about someone attempting to shove a drinking straw down my nose as I try to process what it must have been like for my boys to have nasal feeding tubes.  I have cried for babies that died in the bed next to my son.  I’ve dealt with parent survivors guilt and the random nature of who does and who does not go home from the NICU.  I’ve been secretly jealous of how well another preemie is doing, and then later I’ve learned they are diagnosed with epilepsy or cerebral palsy or asthma or autism or ADHD.

But, in case you’re thinking that I’m just an over-sensitive preemie mom, don’t take my word for it, here are the truths about prematurity from the experts; March of Dimes (MOD), Mayo Clinic (Mayo) and Center for Disease Control and Prevention (CDC).  Links are provided with first fact from each resource.

The truth about prematurity is the risks are real. 

The truth about prematurity is it is a national and global crisis. 

  • 1 in 9 babies born in the United States is born too soon (MOD).
  • Worldwide, 15 million babies are born prematurely each year (MOD).
  • Pre-term birth costs the US health care system $26 Billion Annually (CDC)

The truth about prematurity is it often does not end when the baby goes home or when they turn two, or any other magical number. (Mayo)

  •  Premature children are more likely to have imparied cognitive skills and learning disabilities.
  • Preemies, especially those born before 30 weeks, may develop retinopathy of prematurity (ROP) which leads to 400-600 legally blind infants annually in the U. S.
  • Premature babies are at increased risk of some degree of hearing loss.
  • Children who experienced premature birth are more likely than full-term infants to have certain behavioral and psychological problems, such as attention deficit hyperactivity disorder, depression or generalized anxiety, and difficulties interacting with kids their own age.
  • Premature children are more likely to have chronic health issues including; Infections, asthma and feeding problems.
  • Premature infants are at increased risk of sudden infant death syndrome (SIDS).
  • For some premature babies, difficulties may not appear until later in childhood or even adulthood.

The truth about prematurity is, not enough people understand the truth about prematurity.

I will not spend any more of my energy stewing over an unfortunate comment on Facebook, but I will continue to advocate.  I will continue to correct people when they say, “most of these kids turn out fine” or, “it’s okay if the baby is a little early”. I will continue to wish friends a comfortable end of pregnancy, rather than a too soon end of pregnancy.

Sometimes I may seem annoyingly repetitive, or overly angry but I will not stop sharing the truth about prematurity.

Healthy babies are ABSOLUTELY worth the wait. 

 

 

 

First Day with Ankle Foot Orthotics (AFO’s)

As we continue aggressively (yes, aggressively) removing oxygen from our lives, we are adding in some new equipment for Owen.  This morning, Kellen, Owen and I went to Gillette and had the final fitting for Owen’s Ankle Foot Orthotics (AFOs).  If you’re not familiar with this type of brace, I’ve taken a lot of pictures from different angles so you can see what they look like and have answered a few of the questions that I’ve received about why Owen will be using them.

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Back view, while being worn.

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Front view while being worn.

What is the purpose of AFOs?  AFO’s are used for people who have impaired ankle function.  In Owen’s case, the doctor is hoping that by giving him more ankle support he will better be able to control his body for walking.  To walk, you need to control your hips, knees and ankles at once.  She feels by cutting it down to only two of the three, Owen will start walking sooner.  Also, Owen is showing a tendency to come up on his toes, especially on his right side.  AFOs prevent walking on tip toes.

AFO with no shoes

AFO with no shoes

Does Owen have Cerebral Palsy (CP)?  Owen’s development team is reasonably confident that Owen will not have a CP diagnosis.  At this time, his muscle tone is “essentially normal” in all four extremities.  He has mild increased tone in both of his hamstrings and ankles.  Also, his feet are flat during standing, and as I mentioned above, he favors his tip toes at times.  His doctor feels that by getting his earliest walking in the correct position, through AFO use, there is a chance that his mild tone issues will improve, or at least, not get worse.  She keeps saying, “Owen is a moving target”, which means that she doesn’t feel his tone is fully determined yet.  She is confident that Owen could walk without AFO’s but we are choosing to be aggressive now, in hopes that he may not need AFO;s for life.  From a development and neurological standpoint standpoint, Owen has been diagnosed with PVL, Muscle Weakness, Global Developmental Delay and Impairment.

What is the Process for Getting AFO’s?  In our experience, molds were created through briefly casting the foot, ankle and shins.  As shown here.

Owen getting molded for his AFOs (two weeks ago)

Owen getting molded for his AFOs (two weeks ago)

I was able to pick a fun fish print from a book of many options.  I thought it would be good for summer (assuming it ever gets warm here).  Over the last two weeks, the molds were used to make custom fit, plastic braces for Owen.  Today we went back and the braces were tried on and the final cuts were made and the straps were added.  In all, the appointment was an hour and forty-five minutes because it took about one hour between trying on the braces and making the final adjustments.

Completed AFOs.  Do you love his fish print?

Completed AFOs. Do you love his fish print?

What are Owen’s first Impressions of his AFO’s?  Owen has been doing really well so far.  Within 5-6 steps of hand held walking he had adjusted to the braces and walked comfortably.  When we got home, he crawled and cruised with no complaints.  We will work him up to wearing the braces for longer periods of time, but for now, we are starting at 1-2 hours a day while he’s playing.  The goal is for him to wear the AFO’s during most of his periods when he’s standing, cruising or working on walking.  He will not wear them for sleeping or rest.  We do need to get to the store to buy some more socks that will go higher than the brace.  Amy, mom to the adorable Ailyn Rose has recommended Target store brand socks that are $1.50 each.  That’s a much better deal than the $15-20 AFO specific socks on the market.  Old Navy Triple Roll Socks are another favorite for Amy and Ailyn.

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Owen’s AFO’s are hinged, which means his ankles can flex up, but not side to side. His PT has said, non-hinged AFOs are similar to walking in ski boots, so I’m glad he has the hinges.

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The shin strap is for stabilizing the AFO so it doesn’t move around while he walks. The lower strap is the more functional strap in terms of supporting the ankle.

20130409-121745.jpgBeing only a few hours in, I’m far from an AFO expert, so, PT’s and other’s with AFO experience, please add any thoughts or wearing advice that you have.  As we prepared family for Owen’s braces, I struggled to find a page that talked about AFOs in lay terms or showed pictures from a lot of angles, so I wanted to make that available on ANRC, but I know there are readers with much more advice than I have, so please share!  AFO’s are relatively common in the preemie world and we preemie parents are vultures for information.

What I Wish Everyone Knew About This Preemie Life

Over the last eleven months of blogging, I have noticed a theme within many preemie bloggers’ reason for blogging.  We simply want people to better understand our journey.  For me, what I really ended up finding has been solidarity with other preemie families and a lot of healing through the process of writing and reading my thoughts in others’ writings. Those aspects of keeping a blog have been wonderful gifts and probably more healing than educating “the rest of the world”.

However, I can’t help but still wish for that original goal.  I do have some non-preemie readers, but the majority of this blog’s readers are other preemie parents.  If I had to sum it up into one list of things that I wish people knew about prematurity and being a preemie parent, these are my big ones.

Premature babies aren’t just smaller versions of full-term babies.  Premature babies are born sick.  By referring to where they stay as the “NICU” as one word, it seems that many people forget that the last three letters stand for Intensive Care Unit.  Prematurity, regardless of gestation, presents serious long and short term health and development concerns.

Every premature baby’s story is different.  Your sister’s best friend’s cousin may have had a 22 week 6 day preemie who was less than one pound at birth and is now a Rhodes Scholar and Olympic athlete…or maybe she’s “just fine now”, but that doesn’t in any way predict the outcome for any other preemie.  Preemie parents’ concerns and fears for their children’s immediate and long-term future are real.  You’re right, pondering on those concerns won’t change anything, but if you just brush the concerns under the rug, you’re not being honest, or don’t understand, the risks for children born too soon.

There is nothing magical about two.  Being born too soon is not something that is outgrown.  Medically speaking, once a child is past their due date, they are a “former preemie”.  However, that does not mean the baby has caught up and many don’t “catch up” at two, or ever.  One example is Owen, he will be two in 25 days.  He’s still on oxygen support, he does not eat, he does not walk, he does not talk, nasal congestion caused by teething requires breathing treatments.  He’s not all that unusual within the preemie world.  There are many premature children who are doing better than he and there are many that are not doing as well.  He’s not technically still a preemie, but turning two doesn’t make the impact of his premature birth go away.

Washing your hands is really easy.  I’m pretty appalled that I even have to include this point.  Just do it. It’s the most effective way to prevent the spread of illness and disease.

I am (over) sensitive.  The emotional toll of prematurity is significant for the entire family.  You may mean no harm when you complain about your last weeks of a full-term pregnancy, or use the r-word or try to tell me that I am being over-protective of my child, however, those are only reminders to me that you don’t, at all, get me or my experience.  That makes me feel lonely and sad and a whole slew of other emotions that I haven’t figured out yet.  Just like there is nothing magical in the child turning two, there isn’t some magical point when I become “okay” again either.

I’m not amazing.  I don’t deserve to be on any parenting pedestal.  Some days I’m a great mom, some days I pray that I didn’t just screw up my kids for life.  The tasks on my job description for mom may look a little different from many other’s but at the end of the day, I’m just doing what I need to do to give my kids’ their best chances.  Trust me, it’s what you would do too.

I miss you too.  Partly because of those extra tasks on the job description and partly because of my new emotional needs, I don’t get to see my friends as much now.  For those same reason, I do need to hear from you still.  Thank you for making the effort when it seems one-sided.  I like to hear about your life and not just talk about mine.  If you’re having troubles, I want to still be able to help you through them.  You may need to be more direct with your needs from me, but I am still here for you.  I value your friendship and am so thankful that you’ve stuck by me.

Other preemie parents, what would you add?  Also, I’d love to hear from non-preemie friends and families who follow this blog; what do you think are the key things you’ve learned that we preemie families might be so close to it all that we miss the lesson?

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The Little Things

There are certain milestones that gets nearly every parent excited. Like this one:

I could watch that video all day long.  That sweet voice and I love how he puts his hands over his face when I show my excitement.  Even better, when I do replay it (over and over and over) he says, “mama”

But sometimes, the little things mean just as much.  Like this:

truckThere is so much in this picture that makes me proud of Owen.

  • Look at the way he’s sitting.  Stretching across those belly scars that prevented him from sitting independently before he was 21 months old.
  • He’s using the toy appropriately.  It’s not in his mouth.  He’s not solely focused on the buttons that make noises and lights flash.  He’s pushing the truck forward, like a real truck would drive forward.
  • Speaking of those buttons, that he does occasionally push.  They are tiny.  To make them work, Owen has to point one isolated finger to softly jab the buttons.  You can’t see it in this picture, but that is some beautiful fine motor achievement, Little Boy!
  • He’s playing independently.  I did not pull the toy out and initiate the play or show him how to use a truck.  Owen found the truck and started playing by himself and decided for himself what the appropriate use of the truck was.
  • When I did sit down to take this sweet picture, Owen pushed the truck towards me.  He was initiating that I play with him.  He can play alone, which is important for his independence, however, he also has social desires to play with someone else when there is the opportunity.

I will watch the “mama” video 100 times with a huge, proud smile on my face, and I have the same pride when I see this picture of a little boy playing with his truck.  These, seemingly, small milestones, are just as important because they are the foundation of the next big thing to come.

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