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Sticks and Stones (Why People First Language Matters)

When we received Eisley’s diagnosis at my 23 week anatomy scan, I walked out of the ultrasound feeling like I was no longer pregnant with a baby, but with a diagnosis.  I was pregnant with spina bifida.  Or so it felt like.  We didn’t even know if it was a boy or a girl, but we knew that the baby had spina bifida.

Thankfully, we had our gender reveal party two days later, and we found out she was a girl.  The next day, I turned to Josh, and said, “We need to name her.  Tonight.”  I made a short list of names while he was at work, and that night, we decided on one.  Eisley Mae.

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Finally, I felt like I was pregnant with Eisley and not spina bifida.  She had a name, and an identity beyond her diagnosis.  And for the rest of my pregnancy, I could be excited about the person she would be, disability and all.

Now that she is here, it is much easier to see her humanity beyond her disability.  Sure, she is almost 15 months and has yet to pull up on her own, but she also loves Daniel Tiger and says, “Maow!” when she sees one of the cats.  I have to be aware of her behavior and watch for symptoms of shunt malfunction, but she loves bananas and cuddling, like many other 15 month olds do.

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I want the world to see her as I do-a person first.  She is different than a typical person, but she has so much more to her than her disability.  For this reason, I am very careful about the language I use when speaking or writing about her.  Rather than saying “she’s a spina bifida baby,” I say, “she has spina bifida,” or, “she’s a baby with spina bifida”.  It’s a very subtle difference, but an important one.  Person First language seeks to define the person as just that-a person.  Their disability is a descriptor, and should be used after their humanity.  Just like I would prefer not to be described as “a short girl” but rather, “a girl who is short”.  In my case, my short stature is not a disability, but it is true.  I am 5’0″, well below average height, but that is not the most important characteristic about me.

The same applies for people with adaptive equipment, as well as other disabilities.  Rather than describing someone as “confined to a wheelchair” (which is another blog entirely-they are not “confined”-their wheelchair actually gives them freedom and abilities they would otherwise not have without it!), it is more respectful to describe them as a “person who uses a wheelchair”, or a “wheelchair user”.

Although I am not a part of other disability parenting communities, I have heard that many other disability communities champion Person First language as well.  So instead of saying “He’s a Downs kid,” a more respectful phrasing would be, “He has Downs Syndrome.”

If disability is not your every day, it may not seem like a big deal, so why bother? It does take a little bit of thought and effort to change the way we think and speak about others, but from my experience, you can’t ever go wrong with being respectful.  If you’re not sure, a good rule of thumb is to listen to how a person with a disability describes him or herself.  They would not refer to themselves in a way they feel is offensive, so it is usually a respectful way to describe them.  And many people with disabilities are open to educating others about their disability, so you can also just ask them what they prefer.

Words matter, and they do sometimes hurt.  Being thoughtful with your words can make a world of difference to someone who already has to work so hard to be known and respected by the world.

Maybe people get tired of me gushing about Eisley, but I don’t think I’ll ever stop. #sorrynotsorry.  I just want everyone to know what an amazing person she is.

A person with spina bifida.

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2017, You Weren’t So Bad

The older I get, the more I enjoy New Year’s.  When I was younger, it was all about the thrill of staying up late and seeing the ball drop in Times Square.  I always thought it was so cool that one minute we were in one year, and the next minute we were in another one.  And I definitely remember the change from 1999 to 2000. Our fifth grade graduation party earlier that spring was even millennium themed-eveybody was talking about what a big deal it was, and wondering if everything was going to crash that midnight. Clearly, we are still here, so Y2K turned out okay in the end.

I have come to love this period of the year-the Christmas presents are opened and maybe decorations have come down.  Ads for gym memberships abound, and everyone is talking about their New Year’s resolutions.  It’s a time of reflection on the past year, and thinking about what the next year will bring, and how to bring about positive change in yourself.

I used to scoff at resolutions, thinking you were only setting yourself up for failure, so I didn’t even bother.  Diligence has not traditionally been a strong suit of mine.  But then, last year, I realized that I could accomplish goals (and yes, I had to call them goals instead of resolutions-they sound more long term to me that way), by making them more focused and specific.  For example, one of my goals for 2018 is to do a random act of kindness once a month.  So instead of saying, I want to be more kind, I made a specific way that I can accomplish that.  2018 is also the year I turn 30 (gasp), so I’m looking forward to entering a new decade and finally joining my husband in our old age. 😉

Earlier today, I spent some time looking back over my Instagram posts of the year, and I could not believe how much my girls have grown and changed.  Eisley was a newborn and we had no idea what the future held for her mobility, and Haven was a chubby toddler who had just learned to say book.  Now, Eisley is crawling everywhere and standing with braces, and Haven is speaking in full sentences, able to communicate original thoughts of her own.

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(January 2017-22 months and 3 months old)

 

Eisley started physical therapy, we made it through another busy camp season, we moved to a new house, Josh said goodbye to both of his Grandmas, we celebrated Eisley’s first birthday, and we have seen, time and time again, how the Lord loves our little family and has brought us through.  Eisley had a pretty healthy 2017 (aside from a couple of minor colds and RSV at the end of the year) with no shunt malfunctions or surgeries, which is pretty uncommon for spina bifida.  We are so, so thankful for our 2017.

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(Haven at 23 months old in February, and Eisley at 3 months old in January)

 

Here’s to a great 2017 and a wonderful 2018.  Happy New Year, friends.

 

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(December 2017-13 months old and 2.5 years old)

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I can’t change disability-but would I?

When I go back and read my Instagram post from June 24th, 2016, I can feel the sadness and pain in my words as if I had just typed them yesterday.  It was the day we learned about Eisley’s diagnosis of spina bifida, and we decided to share the news with our family and friends.  I couldn’t stop crying that day, and I felt like my entire world had changed.

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And really, it had.

But I wish I could go back and tell myself that it was changing for the better (not that I would have believed my future self, but still).

A question that I sometimes ask myself is, would I change Eisley’s spina bifida, if I could?

The answer is no.  And yes.  It’s a complicated, conflicted answer.

I would take away the physical pain of surgery recoveries, countless procedures, and chronic pain of everyday life.  I would take away the heartbreak that I am sure that she will experience in the future when a blunt child calls her a baby for wearing diapers, or when an adult gives her a pitying look in the grocery store when they see her braces or adaptive equipment.  I would take away the feeling when she realizes that the world sees her as less than, and when she will have to fight to receive equal access to the world.

I would take all of these things away if I could.  But, I also know that if I took away her disability, I would take away a huge part of who she is.

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She is strong.  I get so many comments on how happy she is, and I just smile and nod.  Because I know it’s more than happiness.  It is a strength that runs deep.  After her surgery the day she was born, she was on morphine for a couple of days, and after that, she only needed Tylenol.  She was recovering from two surgeries in one-her spinal closure, and the placement of her shunt that goes from her brain down into her abdomen.  She physically works so hard to do the things that typical babies do with ease.  Each time I see her crawling across the floor to get a toy, or when she is grabbing my arm while I sit on the floor and she pulls up to her knees, I know the physical effort she is exerting to do these things.  She works so hard, and does it all with a smile and a gentle spirit.

She is dedicated.  Maybe that sounds silly to say about a 13 month old, but I wish you could see the look in her eyes when she wants to accomplish something.  She sets her mind to it, and she knows she will do it, no matter how hard she has to work.  Her physical therapist has commented on it before, saying, “We just have to show her how to do something once, and then she just does it like it’s nothing!”

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She is gentle.  And funny.  She loves to snuggle and loves the cats.  I could go on and on about how wonderful and remarkable she is, but I also want to be careful about turning her into my hero.  Because I want her to feel special, but I also want her to feel like a human being.  She is the heroine of her own story, but she’s not just an inspiration for everyone else’s.

So would I change her spina bifida, and make her just like everyone else?  Ultimately, no.  Because then she wouldn’t be the Eisley Mae that we love and cherish-strong, beautiful, and fearfully and wonderfully made.

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The NICU Days: Round Two

Upon learning they are expecting a baby, everyone always says they just want a healthy baby.  That was my hope during my pregnancy with Eisley.  I just wanted a healthy baby, born at full term, that could be placed on my chest right after delivery, and could come home with us after a couple of days in the hospital.  I’d already had the crazy-delivery-baby-in-the-NICU experience, so surely, lightning can’t strike in the same place twice, right?

Wrong.

After learning that Eisley had spina bifida, I had to go through a grieving process.  I grieved the baby that I thought she would be, and I also grieved the normal delivery experience that I so desperately desired.  I would have to deliver her by c-section, she would undergo surgery right away, and she would likely stay in the NICU for several weeks.

That was a hard pill to swallow.

Looking back on Haven’s NICU time, I see it through rose colored glasses.  It was not fun in the moment, but it was where we experienced our first memories with her.  But as warm and fuzzy as it seemed in hindsight, I didn’t want to experience it ever again.

As time went by in my pregnancy with Eisley, and I had time to process, I got used to the idea of another NICU stay.  After my prenatal care was transferred to the children’s hospital, we got to take a tour of their NICU (which felt swanky compared to Haven’s smaller NICU), and I began to be excited.  As we walked by the pods separated by sliding curtains, with vinyl armchairs next to the isolettes, I could picture myself sitting by her bedside.  Even though delivery was still months away, I felt closer to her, knowing that this is where we would have our first memories together.

After Eisley was born, via c-section, she was taken to the NICU to get settled in, and the neurosurgeons performed various examinations and scans to understand the best way to proceed with her back closure surgery.  Originally, we thought she would have her surgery the following day, but they had an opening that afternoon, so she went in for surgery at seven hours old.

During surgery, the neurosurgeon, with the help of a plastic surgeon, placed her exposed spinal cord back in the spinal column, closed the area at the base of her spine, and placed a shunt-a tube that is inserted into the ventricle, or fluid-filled space in her brain, and drains it into her torso.  The shunt was necessary because Eisley has hydrocephalus, or excess fluid around her brain, as many people with spina bifida do.

After surgery, Eisley had to lay exclusively on her belly to allow for her back closure to heal.  Plastic surgery was worried that because the skin over her back incision was so taut and delicate, it could tear open and cause infection.  Neurosurgery was worried that the skin on her head, stretched over her shunt, was so taut, that it might break down and cause infection there.  As a result, she literally had one position she could lay in-on her belly and with her head turned to the right, so that there was no pressure on her shunt-and for many days, she could only be carefully lifted and held about a foot above her bed, while her bedding was changed out.  It was so difficult to see her so uncomfortable and just wanting to change positions, but we could not help her get comfortable.

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After I was discharged from the hospital, I spent most of the day at the hospital with Eisley, and the afternoons and evenings at home with Haven.  Having Eisley in the hospital was hard, but spending so much time away from Haven, who was just 19 months old at the time, was also really hard.  No matter where I was, I felt like I was neglecting someone.

And then there was the pumping.  Any mom who has breastfed-whether nursing, pumping, or a combination of the two-knows how time consuming and how much of a labor of love it is.  I had to exclusively pump for Haven while she was in the NICU and for a few weeks after, until she got the hang of nursing, and let’s just say it was not my favorite season of life.  Because Eisley was not able to be held for several days, I had to exclusively pump to protect my milk supply until she could nurse.  At three days old, she had an NG tube placed, so she could receive my breastmilk without having to nurse.

By four days old, I was allowed to carefully hold her, straight enough for her back incision to be protected, and upright enough to help drain some fluid from her head, as she was dealing with some pretty intense swelling, but not too upright so there wouldn’t be too much fluid draining and have it leak out of her back incision.  We were only allowed thirty minutes of holding time a day, and it was heaven to feel her skin against mine.  I loved that I could finally, if only for half an hour, be a physical comfort for her.

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First time holding her post-surgery at four days old.  She was so swollen for several days.

 

As for her movement, we were happy to see that she could move her hips, knees, and ankles (and later, we would see even her toes move, but during her NICU stay, we did not know if she could move them).  Babies with spina bifida are often born with foot irregularities-sometimes clubbed feet.  Eisley did not have clubbed feet, but she did have excessive dorsiflexion of her feet.  She basically rested the tops of her feet against her shins, and her foot could not move past about 90 degrees.  So, while she was on her belly, the bottoms of her feet could almost rest flat against her bed, and she would often push off and wiggle herself to the top of her bed.  Almost every doctor and nurse who came to see her would be very impressed by her movement.  Physical therapy made her little foam splints, with a strap that went around her ankles, and another around the arches of her feet, which provided a little bit of a barrier so she would not pull her feet up so far.

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For the most part, Eisley’s NICU stay was smooth sailing, with one exception.  At eight days old, the incision on her belly, where they had placed the bottom end of her shunt, began to leak.  This was concerning because if it was leaking out, bacteria could get in, cause infection, and make a new shunt and another surgery necessary.  At ten days old, they tapped her shunt-meaning they drew out a sample of cerebrospinal fluid-and sent it for testing.  If it grew bacteria in a certain timeframe, it was a good indication that there was an infection.  Thankfully, it came back clear after a couple of days, so her shunt was fine, but she did have to start a round of antibiotics, just to be safe.

At nine days old, she was finally healed enough for me to try to breastfeed her.  I was able to manage to get her into a safe position for her back by reclining in the chair, laying her on top of me, belly to belly, and resting her head in the crook of my elbow.  It was a little awkward, but I was so over the moon that she took to breastfeeding right away that I didn’t even care.

At this point, we had settled into a routine.  Every day, I would say goodbye to Haven (always hard), get to the hospital around 9, make my way up to the NICU, wash up, hand over my cooler bag of milk I had pumped and frozen the night before to the nurse, and say hi to Eisley.  We would settle in to nurse, and I would soak in the snuggles and try my hardest not to fall asleep-or at least to not let any of the nurses see me sleeping while holding her.  I will forever be grateful to one nurse who told me later that she came over to check on us, saw we were sleeping, and let us be because we looked so peaceful and happy.

After breastfeeding/snuggling/sleeping, our nurse would help maneuver Eisley and all of her cords and wires back into her bed, and I would head down for lunch in the cafeteria or the Subway in the hospital.  I would usually call Josh and update him as I ate, and ask how Haven was doing.  On some days, Josh, his mom, my mom, and Haven would come up to the hospital to eat lunch together, and I loved getting to see my big girl during those times.

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After lunch, I would head back up, and breastfeed/snuggle/sleep some more.  If Eisley was peaceful in her bed, sometimes I would pump instead.  I will also be forever grateful for a nurse who was also a lactation consultant, and petitioned with the neonatologist to have Eisley breastfeed “ad-lib”, meaning I could feed her whenever I wanted to, rather than having to stick to the NICU three hour schedule.

It was also during these days that I became friends with the mom whose baby was staying next to Eisley.  It was so wonderful to talk to someone who was going through similar things-pumping, trying to spend time with our older children, advocating for our babies.  We would listen in through the curtain when the doctors did rounds on the other baby, and rejoice when there was good news, and pray when the news was not good.  Sadly, her baby passed after we left the hospital, but I will always remember what joy and encouragement they both brought me during that time.  She blogs about her baby’s life and what she has learned from her at My Preche.

By sixteen days old, Eisley was finally allowed to lay on her back, which was a huge step toward coming home.  I couldn’t get over how cute she looked on her back, and you could see on her face that she was so happy to be able to see the lights on the ceiling.

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At seventeen days old, she was able to start wearing clothes, and move from her radiant warmer (an open isolette that had a heating element above to keep her warm) to a crib.  That was a really exciting step.  The next day, she had a test called a VCUG to determine if she had any urine refluxing from her bladder to her kidneys.  People with spina bifida usually have various bowel and bladder issues, as the nerves controlling your bowels and bladder are located at the end of your spine, so they wanted to make sure that her kidneys were not being damaged by reflux.  She had just a bit of reflux to one kidney, but not enough to cause issues.

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At twenty days old, we stayed the night with her at the hospital in preparation for her to go home the next day.  We were very excited and ready to take her home that day, but unfortunately we were not able to.  We needed to talk to urology one last time, but logisitics did not work out to meet with them that day.  So we went home without her one last time.

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The next day, Eisley was 22 days old, and we finally got all of our ducks in a row at the hospital, and she was allowed to come home!  I’m sure that bringing home a typical baby is wonderful (although I’ve never experienced it), but let me tell you, since I’ve done it twice now, bringing home a baby from the NICU is an amazing feeling.

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As I write this, we are about to celebrate one year home from the NICU, and no other hospitalizations for a year, which is somewhat uncommon with spina bifida.  We are so thankful for this year that we have been blessed to have Eisley healthy and happy at home.

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Hello, Sweet Baby (Eisley’s Birth Story)

**Note: Open talk about surgery ahead.  If that’s not your jam, you might want to skip this post.**

 

The night before I went into preterm labor with Haven, I had no idea I would be giving birth the next day.  I was several weeks away from my due date.  So, I assume I got a pretty good night’s sleep, or as good as one can get at 35 weeks pregnant, anyway.

The night before Eisley was born, however, I knew exactly what was going down the next day.  She had been diagnosed with spina bifida halfway through my pregnancy-a birth defect in which her spinal column failed to close properly, leaving a portion open and exposed on her back.  We had decided with our specialists that a cesarean was the safest route for delivery, and I had spent the rest of my pregnancy slightly terrified of the impending surgery.

So, even though I knew I needed rest the night before, I just couldn’t go to bed.  I put Haven to bed on her last night as an only child.  I triple checked that my bags were packed.  Took a shower.  Laid in bed and tossed and turned-I was a giant bundle of nerves.  I’d say I was about 50% excited and 50% scared.  Not only was I having surgery, but my newborn baby would have surgery as well to close the defect on her back.

I somehow managed to squeeze in about 2 hours of sleep before it was time to go.  In the wee hours of the morning, we packed our hospital bags in the car and got ready to go.  I crept in to Haven’s room to whisper goodbye, and a tear slid down my face.  I knew she’d be fine staying with both of her Grandmas the next few days, I just didn’t know if I would be fine without her.

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Right before we left for the hospital.  This was my last belly pic at 39 weeks and 3 days.

When we arrived at the hospital, I got checked in, changed into my gown, and two nurses came in to start my IV.  The nurse who was placing it seemed like more of a newbie, and it took her a couple of tries.  She told me, “Wow!  Your vein just blew up like a balloon!” Not a good thing to say to someone who hates thinking about or looking at veins.  Ugh.  Even just typing it makes me want to puke.

As they wheeled me out of the room, I said bye to my Mom, who would wait in my recovery room during the surgery, and Josh was instructed to change into his scrubs.  The ride to the OR was shorter than I expected-through one set of double doors and we were there.

I slid down off the hospital bed, and shuffled into the OR, holding my gown closed so as not to moon any of the staff.  The room was COLD.  Like, frigid.  So, this is what an operating room looks like, I thought.  This was surgery numero uno for me, so I don’t know what I expected, but it was still surprising to me.

It took the anesthesiologist three tries to get my spinal block in, which wasn’t awesome, but it also wasn’t as bad as I expected.  It was such a strange sensation to suddenly have the entire lower half of your body numbed, and as they laid me back, strapped me down, and raised the curtain, I marveled at how I could sort of feel, but sort of not.  If you’ve had a c-section before, you know what I’m talking about.

Josh was finally allowed to come in, and I was relieved.  He was a little nervous for me, and we tried to make light conversation as they began the surgery.  It was weird to make small talk with my husband of 7.5 years, as if we had nothing better to talk about than the weather, but I needed to keep my mind off of the fact that I was being sliced open as we spoke.

I had pre-warned the OR staff that I did NOT want a play-by-play of what was happening, and they assured me that they would try to be as vague as possible.  But, then I heard, “We have a bleeder!”

Shoot.  That’s not good.  I may be no medical professional, but I’ve seen enough Grey’s Anatomy surgeries to know that bleeders are never a good thing.

The atmosphere in the OR became a bit more tense as they tried to stop the bleeding.

A few months before, as I tried to wrap my mind around the fact that I was definitely going to have a c-section, a friend with three cesareans under her belt told me that it feels like someone has a hold of your legs, and is tugging you back and forth.  As I laid on the operating table, I realized that’s exactly how it felt.

“Rupture!” A nurse called out, indicating when the amniotic sac broke open.  As they lifted her out, I suddenly felt lighter, like my body lifted from the table, ever so slightly.

And then, a cry.

When Haven was born a year and a half earlier, she weakly cried out once, and then nothing.  She did not have the strength to inflate her lungs on her own, as she was a month premature, and she was quickly given oxygen to help her breathe.

I hadn’t given much thought to how I hadn’t really heard much of a cry after Haven’s birth, but as I heard Eisley’s cry, it brought a wave of emotions that I hadn’t really expected.

Relief at hearing that my baby was ok. Wonder at the fact that I was hearing this person for the first time that I would love so much and know so deeply, and yet knowing nothing else about her in that moment other than her cry.  Tears welled up in my eyes.  And somehow, under all these emotions for my second born, a twinge of grief for my firstborn and how we had missed this moment with her.  If you’ve had an unexpected or traumatic birth, you know what I am talking about.  I think I will always carry little pieces of grief for both of my birth stories and how I wish I could change some things about the circumstances.

The anesthesiologist lowered the curtain a bit, and the doctor held Eisley up for us to see her.  I tried to lift my head, but either I couldn’t lift it far, or the angle I was at didn’t allow for me to see her.

They took her to the adjoining stabilization room to sanitize and cover her open defect on her back, and Josh went with her.

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Right after delivery.

Suddenly, I felt alone.

I could hear the OR team talking through closing me up, and I knew the anesthesiologist was somewhere behind my head, but it felt like it was just me and the ceiling tiles I was staring at.

I tried to busy my thoughts so I wouldn’t think too hard about what was happening with my body.  Then, the nausea hit.

“Umm,” I told the anesthesiologist, “I feel like I have to throw up.  What do I do?!” I felt a little panicked.  It’s not like I could run for a trash can to puke in.  “Just turn your head to the side,” he told me.

I turned to the side and dry heaved.  I was relieved I hadn’t actually puked on the OR floor.  That would have been embarrassing.

I don’t know if it was the 2 hours of sleep catching up to me, the blood loss, or the anti-nausea meds I was just given through the IV, but suddenly, I NEEDED to close my eyes.  I felt like a cartoon character from the 40’s or 50’s with anvils attached to my eyelids.  “I’m reeeeeeally tired,” I told the anesthesiologist. “You can sleep if you want to,” he said.

So I went to sleep, right there on the operating table as they put me back together.  It was the best sleep ever, I tell you.  When I woke up, which I have absolutely no idea how much time had passed, I felt like a million bucks.  Well, as much like a million bucks as you can while being operated on.

One of Eisley’s doctors came to update me.  “She is doing great,” he said. “She is 7lbs 5 oz, and 19 3/4 inches long.  We have covered her back to keep it sterile, and we are working on placing her IV.  Then, she’ll head down to the NICU to get settled in.”

Finally, they were done with me, and I felt like a weird, numb board as they tilted me back and forth to place a sheet under me to move me back to the bed.  As they wheeled me out, the same blunt nurse who had placed my IV earlier said, “It looks like a bloodbath on the floor.”  Ahem.  Again, NOT a good thing to say in front of your patient.

I was wheeled back to my room, where my Mom waited for me.  I spent the next hour or so trying as hard as I could to wiggle my toes.  The sooner I could move around, the sooner I would be able to get to the NICU to see Eisley.  My nurse told me that the c-section moms who deliver at this children’s hospital (who typically have babies who need medical intervention), are up and around much faster than other c-section moms in the community, because they are extra motivated by the incentive of getting to see their babies in the NICU.

Josh came back, and told us they were still trying to get her IV in.  Apparently, she was a very hard stick, and it was taking their very best people to get it right.  A few minutes later, a team of nurses wheeled Eisley in to see us. “Can I hold her?” I asked.

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I knew, going into Eisley’s birth, that I may not be able to hold her.  It was a hard reality to come to terms with, especially given the fact that I had not been able to hold Haven until several hours after she was born, and even then it was with wires everywhere and a bulky CPAP strapped to her head to help her breathe.  They assured me throughout my pregnancy that they would do their best to try to make it happen, but it really just depended on Eisley and how stable she was.

But, miracle of miracles, I got to hold her.

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It was only for maybe about 5 minutes, but it was 5 minutes that I didn’t know I would have, so it felt like heaven.  It was also healing, in a way.  While I still grieve that I didn’t get anything like this with Haven, I was so thankful that I got a few moments with Eisley, even if it was two hours later.

They took her to the NICU, where she was evaluated by neurosurgery.  They decided that she would have her closure surgery that day rather than waiting until the next day, and that she would, in fact, need a shunt to drain the extra fluid from her brain-a common side effect of spina bifida.

So, at seven hours old, she went in for surgery.  Oddly enough, I didn’t feel scared or anxious during this time.  I trusted the hands and the wisdom of the surgeons as they placed her tiny nerves back inside her spinal column.

Later that night, I was loaded up into a wheelchair, and my nurse pushed me down to the NICU while Josh followed behind, wheeling my IV pole.  We made our way to the back corner of the NICU, and I was able to sit next to Eisley’s bedside.

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She was still intubated from surgery, and she laid peacefully sleeping on her belly.  The monitors beeped as I leaned in, trying to ignore the pain in my abdomen, and I placed my hand gently on her upper back.  Her skin was soft and warm.

A whiteboard above her bed read, Today’s plan: Rest and Recover.

You and me both, Sweet Girl, I told her.

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Diagnosis Day

“Ok, we’re all done,” the ultrasound tech told us.  “I did see something fairly concerning, though.”

I steeled myself.

“Ok?” I replied.

“Have you ever heard of spina bifida?”

Honestly, the only context I had for spina bifida was Zola Grey Shepherd, the African orphan adopted by Derek and Meredith on Grey’s Anatomy.  I had no idea what it was, but I knew Derek had fixed her with his magic neurosurgeon hands and she was a perfectly normal girl.  But that was TV, and this was real life.  Magic neurosurgeon hands like Derek Shepherd’s do not exist in real life.

The ultrasound tech had us wait in the waiting room, while she called our nurse practitioner across the building to alert her to our situation.  As we waited, I began to cry.  After a preterm delivery with Haven, all I wanted was a healthy baby and a normal delivery.

We waited.

Waited, and waited.

In the spina bifida world, they always say, stay off of Google.  Google is your worst enemy.  I couldn’t help myself.  Sitting there with the name of a diagnosis but no knowledge except for Zola Shepherd was agonizing. I Googled.

A birth defect in which a developing baby’s spinal cord fails to develop properly.

Can’t be cured, but treatment may help.

Pictures of babies with round, open defects on their backs.

“What is spina bifida?”  Josh asked me.  “I don’t really know,” I told him.  “But I know it’s not good.”

We were finally called back to speak with the nurse practitioner.  She told us that the baby had a neural tube defect, and the ultrasound would be reviewed for further information for official diagnosis.  She said that the defect was low, which usually means less of an impact on mobility.

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I felt ridiculous for crying, but I just couldn’t believe this was happening.  As we listened to the nurse practitioner, I sat with a tissue scrunched in my hand, wondering why we had to go through even more than we already had.  Miscarriage.  Premature birth and a NICU stay.  Now, this???

As we left, we began to call our family and friends to let them know.  I felt shattered.  This baby I was carrying suddenly felt foreign.  I felt like I was pregnant with a diagnosis, not with a baby.

We had asked the ultrasound tech to write down the gender and place it in an envelope, so we could be surprised at our gender reveal party two days later.  After learning of the baby’s diagnosis, we questioned if we even wanted to do the party anymore.  Hanging blue and pink decorations and cheerfully holding my belly in anticipation of learning if it was a boy or a girl was the last thing I felt like doing.  But, we decided to go ahead with the party.  I knew that if we just opened the envelope, we would be disappointed with how we found out, and we needed something to be fun.

The next day, as I drove back from the house of my friend who was hosting the party, I found myself alone in the car.  The tears came slowly, then turned into sobs.  It was the first time I really let myself vocalize the grief I felt.  I don’t want this, I sobbed. It’s too much.

I couldn’t be the parent of a disabled kid.  I had never even considered the possibility, but the reality was suddenly thrust upon me, and it felt overwhelming.

The next day, I was able to pull myself together a bit more.  It was party day, and I was relieved that I would finally learn more about who this person was.  I needed to bring my mind back to the baby, not the diagnosis.

We had planned a fun, backyard grill out for our gender reveal.  A few days before, we gave the envelope with the gender to a friend, and she had ordered Holi powder, the colored powder used in the Indian festival called Holi, as well as in color runs.  When I had envisioned this gender reveal months before, I imagined a cloud of pink or blue colored powder floating through the air.  We had done silly string for Haven’s reveal, so I thought Holi powder was as least as fun, if not more fun, than silly string.

We ate burgers and macaroni salad, kids ran through the sprinkler, and friends made guesses about the baby’s gender.  They all knew of the diagnosis, and solemn talk about what it meant for the baby was peppered in with the excitement of learning if it was a boy or a girl.  I felt mostly happy, but the party was still tinged with sadness.

It was finally time.  Our friend in the know brought out the men’s black dress socks filled with the powder (random, I know.  It was the best solution I could come up with for a container that you could reach into but not see).  Josh and I were given a sock each, and we reached in to pull the powder out to throw in the air.  The sock bounced off of my belly, leaving a pink mark.

“It’s a girl! It’s a girl!” One of the kids yelled out.  I was a little disappointed I didn’t find out with the cloud of colored powder I had imagined, but I threw it in the air, anyway.  Everyone cheered.  Socks were passed out to everyone, and a pink powder fight ensued.  It was quickly realized that the best way to color fight was by hitting each other with the socks.  It was as fun as it was hilarious.

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I turned to Haven, on my hip.  “You’re going to have a sister!”

The next day, we decided to name her.  Just like with the gender reveal, we needed to know her as a person, as more than her diagnosis.

We decided on Eisley Mae, and made a fun video with Haven to announce it to our family and friends.

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Over the next weeks and months, as we learned more about Eisley, spina bifida became less scary.  We knew she would have to have surgery right after birth to close the defect, we knew that she would definitely have a NICU stay, and we knew that she might have issues with mobility and might need a shunt to drain the extra fluid from her brain.

But she was still Eisley, and as my sister reminded me, she was always meant to be a part of our family, and we were meant to be her parents.  And I’m so thankful she is ours.

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New Name, New Season.

Every year, when the time comes to renew my domain name, I put it off.  I don’t know why.  Maybe it’s because I’m a chronic email-notification-swiper-awayer, and then I forget about it, or because I inevitably end up letting it expire and it becomes more of a headache than it needs to be.

Whatever the case, this year, I decided I wanted a fresh start to my blog.

Many things have changed since I started it.  I began writing here while we were part of the way through with The World Race, so I could have a space to continue writing as we came home.  After returning to the States, we started trying to conceive and experienced the difficulty of a miscarriage, conceived again and had Haven, who was born a month early and had a NICU stay, Josh began the perfect job for him-working with inner city youth and camp ministry, and we had Eisley, who has spina bifida.

Along the way, I have discovered that my passion and my heart for this season lies with my children and my husband.  Earlier in our marriage, my heart was for the Nations and to serve outward, but now that has changed to serving inward to pour into my family.

As I was pondering a name change, I asked my sister if she had any suggestions.  She suggested Mend and Bloom, and I instantly fell in love with it.

Mend is a play on our last name (Mendenhall), and also references Eisley’s spina bifida, and how she was mended (get it?!) after her birth.  If you are wondering what spina bifida is, check out the Spina Bifida tab at the top. In short, it is a birth defect that develops in very early pregnancy.  A portion of her spinal column did not close all the way, leaving it to be open on her back.  She had surgery to place her spinal cord back inside her back at 7 hours old.

I also love the imagery of mending a family together.  There are too many times to count when Josh and I have said or done something that hurt or angered the other person.  We have a rule that we never go to bed angry, even if that means staying up until the wee hours of the morning to work it out.  Or there are the many times that my toddler is being disobedient or just cannot do the thing and she is on my last nerve.  Or when the baby is crying and the exhaustion sets in and I feel like there is absolutely no way that I can give any more of myself than I already have.  It’s in these moments that I remember that I can’t do this alone, say a little prayer, and find a way to fix it.  Mending and holding the family together is part of my job, and it’s one that I (usually) delight in doing.

And finally, Bloom.  At the beginning of this year, I wanted to find a word that I could focus on for the year.  My first thought was improve, because there were several areas of life that I wanted to improve in.  But that felt too rigid and dry.  The idea of improvement morphed into thrive.  Because yeah, I want to improve, but not so much so that I am miserable in trying to attain these ideals of perfection.  I want to do what I can, and celebrate the progress-I want to thrive in whatever stage I’m in.  I also want to help my family thrive, in the midst of the crazy, the mundane, and the challenges of life.  We’re on the cusp of Spring, and just yesterday, Josh pointed out that a tree across the street from us has the tiniest little blossoms starting to show.  I love all seasons for the special things they bring, but there is just something about the first blooms of Spring that makes my heart come alive.

20170225_215439-02.jpegMy super artistic doodle-drawn with jumbo crayons over naptime.

So.  I hope you will join me on this journey of pouring into my family and helping us to thrive.  If you’d like to follow along, there’s a little bar there to the right to enter your email address.

I hope you have a great week!

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