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.



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.



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!”



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.




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?


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.



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.


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.



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.



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.



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.



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.



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.



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.



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.


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.



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.


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.


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.


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.


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.



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!



Overcoming Adversity: Our Breastfeeding Journey

It sat there, next to my hospital bed, staring at me.

My breastpump.


(Google image courtesy of http://www.medelaimages.com/product_images/lrg/Symptroll-02-002.jpg)

My daughter had just been born, four weeks and two days early, and had been whisked off to the NICU.  The nurses had rolled the pump in, and told me it was there when I was ready to use it.  I knew I needed to, but I was too busy being on an emotional high and scrolling back and forth through the few pictures we had of her to bother much with the pump.

If only I had known just how necessary that pump was going to become.

After finally being able to go down to the NICU to see Haven, and after moving to a recovery room, the nurses asked if I had begun pumping yet.

“No, not really,” I told them.  They reminded me of the importance of beginning to pump, since I wanted to breastfeed and Haven was in the NICU.  They showed me how to use it, and I began pumping.

The first several times, I got maybe a drop or two.  It was pretty discouraging at first, but my Mom encouraged me that my milk would come in; I just needed to keep pumping.

So, those first few days in the hospital, I pumped every two hours, and walked the few drops I was getting down to the NICU.  Because she was on a CPAP for breathing help for the first few days, we were not able to attempt nursing until she was breathing room air.  She was receiving IV fluids, so all of her nutrition was coming from the fluids, so it wasn’t a problem that she was not receiving colostrum or breastmilk yet.

First Time Holding

My first time holding Haven

The first time I attempted to nurse her, she was a few days old.  The nurse set up the privacy screen around us, and showed me how to hold Haven to help her latch on.  She latched right away, but was just sitting there.  We let her stay there for comfort, until it was time for her to go back in her isolette.  Each time over the next few days it was the same story-she would latch on, but fall asleep despite our attempts to wake her.

Once she finished her IV fluids, it was critical that she take in milk, whether from nursing or being bottle fed pumped milk.  The nurses would help me to position and latch her, and asked me to time how long she actively nursed.  If she was actively nursing for 20 minutes, it was considered a full feed and she didn’t need a bottle afterward.  If it was any less, she would receive a bottle.  They did not want her to attempt to nurse for longer than 20 minutes, because the calories she would expend would be more than she was taking in.

I would sit and watch the clock, hoping and praying that she would start nursing.  There were a few times when she nursed 5 or 10 minutes, and once when she nursed the full 20, but most of the time she wouldn’t nurse at all.  It always felt like somewhat of a defeat when I would give her the bottle.  I wanted SO badly to be able to nurse Haven, and every time she didn’t, that dream felt farther and farther away.  Even though the bottle nipples were “slow flow”, the milk would pour out of the sides of her tiny mouth, so we had to tuck a washcloth under her chin to catch all of the milk.

Josh Feeding Haven

Josh giving Haven a bottle in the NICU


After our nursing attempt and subsequent bottle, I would send Haven back out with the nurses to be hooked back up to the monitors, and I would pump.  By this point, I was starting to develop a love/hate relationship with the pump.  I loved that I was able to provide the best possible nourishment for my baby, but I hated the process of pumping.

It takes a few minutes to unpack all of your pump parts, put on a pumping bra, and hook up to the pump.  The feeling of pumping is not a particularly enjoyable one, either.  It’s not painful, but just not enjoyable.  Then, you have to wash all of your pump parts, and since I was only bringing one set back and forth to the hospital, I had to dry them with paper towels every time.

While at home, I had to pump overnight.  I would usually get a set of pump parts ready, place them in a plastic mixing bowl by my bed, and when my alarm went off, I would sit bleary eyed on the edge of the bed while I pumped.

Any mom who has pumped long-term with an electric pump will tell you that her pump “talks”.  Especially in the middle of the night, when your brain is SO tired, and is trying to make sense of the rhythmic whir of the pump.  I swore my pump said, “Diego, diego, diego…”.  I tried to make my brain hear, “Haven, Haven, Haven…”, to help me remember why, in the middle of the night, I was attached to a machine that repeatedly pulled my nipples into a tube.  It seemed like that would make it better.  But alas, I still heard Diego. 😉

I did love the satisfaction of pouring one bottle into the other after finishing a pumping session, and seeing what my total was.  Even if it was just 30 mL (or one ounce), I was elated.  After pumping in the NICU, I would apply the ID sticker to the bottle, record my times and amounts in my pumping log, and head back out to Haven’s isolette.  If a family member was there that day, I would proudly show them the little bottle and tell them how much I was able to pump.  I couldn’t do much in those early days, but providing milk was something I could do, so I did it proudly.

The last few days in the NICU, Haven just needed to get on a weight gaining trend.  She had been losing weight for a few days, which was concerning.  After a few days of gaining weight, she was given the green light to go home!  She was still not nursing, and was actually screaming at the breast, until I would give up and give her a bottle.

First Carseat Ride

The car ride home


This feeding process continued every 3-4 hours at home: she would wake and scream while I tried to latch her, I would cry and give up after trying for 15 or 20 minutes, we would feed her a bottle, and I would pump.


Bottle Feeding

Bottle feeding at home

This went on for weeks.  It was draining, heartbreaking, frustrating, and every other difficult emotion you can throw in there, topped with the inevitable sleep deprivation that comes with being a new parent.  I felt like I was making my newborn baby cry it out every three hours.  As she screamed and pushed off of me, I would cry and ask, “Why??? Why won’t you nurse?”

Eventually, I realized that a few things were happening.

First, I was not catching her hunger cues early enough.  The feeding process was becoming such an emotionally difficult process that I dreaded, so when she first began to wake up, I would sit there for a few minutes and think about how much I did NOT want to start everything all over. By the time I got her to the breast, she had enough time to realize how hungry she was, and was not happy about it.

She also had bottle/flow preference.  This was a big one.  She was used to the milk coming fast and easy, and not having to work for it.  If I could get her to latch on, she would get frustrated that the milk was not dripping into her mouth, and everything would spiral downward from there.  She did not know how to or really have the strength to pull the milk out of the breast, especially considering that for much of this time, she had not yet reached her due date.

Because she kept having these stressful experiences every 3-4 hours, she started to associate being at the breast with stress.  I would place her in the cradle position, and even before attempting to latch her, she would start screaming.  As a mom, that breaks your heart.  Even though I knew it wasn’t true, I couldn’t help but feel like she hated me.

Pumping and bottle feeding was also becoming super stressful.  We blew through the extra milk I had pumped while she was in the NICU, and I was pumping each time for the next feeding.  She would finish a bottle, and still be hungry, and I didn’t know what to do.  I felt like I wasn’t pumping enough to satisfy her.  Every pumping session, I would pray for enough, and either triumphantly pour it into the bottle and put it on the nightstand for the next feeding, or I would cry with stress and worry that I was starving her.

At around 6 weeks old, I called my mom, crying. “It just isn’t working,” I told her, through my tears. “She is never going to nurse.  Maybe I just need to give up and switch to formula.”

“If that’s what you need to do, there is nothing wrong with that,” she said.  “I don’t know anyone that has tried breastfeeding harder than you have.  Giving her formula doesn’t mean you love her any less.”

So, with a tremendous amount of guilt, despite my mom’s reassurances, I found myself on the formula aisle in Target.  I felt like a failure. (Side note: In no way do I mean that moms who use formula are failures.  This is just me being real about my sleep deprived, emotionally exhausted mental state at the time. Formula has fed countless babies whose mothers could not or choose not to breastfeed, and in the end, FED is best.)  I picked out one that was formulated as a supplement for breastfed babies, and headed to the checkout.

The first formula bottle I mixed up was done so with tears.  A tiny voice crept into my head: I’m a bad mom. (Again, not formula bashing.  Remember, trying to breastfeed had been my life-almost an obsession-around the clock for weeks.  And because, sleep deprivation.)  You know what?  NO. I told the voice. I’m a GREAT mom.  I’m putting Haven’s needs above my own desire for her to breastfeed.  And that is what a good mom does.

I had been attending the breastfeeding support group at the hospital where Haven was born, as well as joining a local breastfeeding support group Facebook page.  Somewhere along the way, I heard the very best piece of advice.  To the new mom who is reading this and is struggling with breastfeeding: let this sentence soak in and remember it in those moments that you want to quit.

Never give up on your hardest day.

That day that I called my mom in tears, I figured that was my hardest day, so I knew I couldn’t quit.  Even though I was getting some formula to supplement, I wouldn’t let myself give up that day.  I couldn’t.

In hindsight, that was my hardest day.  It only got better from there.

I started watching her while she slept, and would scoop her up as soon as she started stirring.  This gave me time to try to get her latched before she realized she was hungry and completely lost it.

Haven and Moo

Haven napped in her Rock ‘n Play while I waited for her to wake up

At the suggestion of a friend, we switched to the Munchkin Latch bottles.  They are made for breastfed babies, and they don’t drip out when turned over like many other bottles do.  This helped Haven to learn how to draw the milk out, instead of waiting for it to drip in.

We also began to practice paced feeding when giving her bottles.  With paced feeding, you hold the baby more upright instead of reclined, hold the bottle horizontally, and take it out every couple of minutes for 30 second pauses.  This slows the baby down to more of a nursing pace, and taught her that eating from a bottle was just as slow as nursing.


Josh giving Haven a bottle at the park


I also started using a nipple shield-a silicone nipple that is worn over the mother’s nipple. Its intended use is to assist with latching when a mother has flat or inverted nipples, but is also sometimes used for preemies, because it gives them a little more to anchor onto.  I had tried the shield a couple of times in the NICU, but hated it because Haven would just knock it off in her flailing, and milk would spill everywhere.  But I decided to try it again, because it would at least get her back to the breast, rather than eating from only a bottle.  In an effort to keep the shield on while she was flailing, I started taping it on with medical tape.  I ended up with red rings on my breasts from pulling the tape off every few hours, but it kept the shield in place, and she was nursing with it, so the discomfort was worth it.  I was also making sure to pump after every feeding, to protect my supply.  Nipple shields are very useful tools, but should be used with caution, and under lactation consultant guidance, because it can be hard to maintain supply with them.



Nursing with the nipple shield


At one point, I realized that she was getting frustrated with the inefficiency of the shield, so I started trying without it.  Sometimes she would latch without it, and sometimes she wouldn’t.  If she did, I felt like I couldn’t move a muscle because I didn’t want to mess it up.  Without fail, every time she would successfully latch, my nose would start itching.  I often asked Josh to scratch my nose for me so I wouldn’t have to move.

We eventually got to the point where we were using the shield less and less.  Those times that she directly nursed, my heart soared.  I suspect the oxytocin released while nursing also had something to do with it, but I was SO excited and thankful that my baby was finally nursing.  I think the day when I was able to leave the house with no pumped milk, no shield, and no breastpump was the day when I felt like we had finally arrived at a successful nursing relationship.


Kicked back after a successful nursing session

It was an incredibly long, difficult, emotional road, but now 10.5 months later, Haven is still nursing like a champ.  She eats solids for all three meals a day, and has recently moved to mostly nursing before and after sleeps, and several times overnight.  Sometimes, when I look back at the beginning of the journey, I can’t believe the obstacles we overcame.  We are incredibly lucky that it all worked out for us-many moms and babies aren’t able to overcome those challenges, but we did.  I was extremely determined (read: stubborn) to make it work, and in the end, I think that that is what made all the difference for us.  Determination and support.

To the mom who is struggling with breastfeeding right now: don’t give up.  You can do this.  It gets better.

Thank you for reading about our journey, and I encourage you, if you are struggling with breastfeeding, feel free to comment or email me at jen.r.mendenhall@gmail.com .  I would love to chat, give you some resources, and pray for you and your baby.

Nurse on, mommas!

20160115_200916Pulling Up




Remembering the NICU Days

In a few short days, Haven will be nine months old. Nine months of joy, sleep deprivation, laughs, changing diapers, and watching her grow.

Oatmeal 8 Months

I knew it would feel bittersweet to see her grow and change, and I love seeing how she is discovering the world around her and getting stronger.  But, I also fiercely miss the days when she was five pounds and some ounces, barely staying awake to eat, and snuggles for dayssssss.

And, strangely enough, I also sometimes miss our days in the NICU.  These are our first memories with her, and even though it was Hard with a capital H to have her in the hospital, I understand why I look back so fondly on them.

I left off on her birth story at the first time I got to hold her in the NICU.  If you haven’t read them, you can read Part One and Part Two.

After holding her for a while, I gave her back to the nurse to place her back in the crib.  She wasn’t in an incubator yet, and she looked so little and helpless with wires everywhere.  I asked my Mom to take a picture of me, Josh, and Haven-our first family photo.  It’s not the one I was expecting-in the hospital bed, minutes after birth, with the baby sleeping peacefully on my chest-but it was our first picture, and part of our story, and I love it for that.

First Family Photo

The nurse explained to me that I could come down and see her anytime I wanted, with the exception of 6:45 to 7:45 pm and am, while the nurses changed shifts.  We headed back down to my room, and I tried to settle in and get some sleep, a difficult task while on an emotional high off of getting to see and hold her.

For the first few nights, while I was still admitted in the hospital, I would get up to pump in the middle of the night.  I was only getting a few drops at most, but I knew any little bit would help her.  I would walk down the hall, even at 4 in the morning to go see her and drop off the tiny bit of milk I had.

I couldn’t try to nurse her for several days, until she was off of oxygen machines.  Until then, she was receiving IV fluids for nourishment, as well as IV antibiotics for her suspected case of pneumonia.  Because she couldn’t nurse, the NICU nurse would take a q-tip, dip it in the drops of milk, and swab it in her mouth.  She said it was called oral care, and it gives her a taste of the “liquid gold”.

After the first night, Haven was moved to an incubator in the spot right in front of the desk.  She was the first baby you saw as you came in the doors to the NICU.

After two and a half days, I was released from the hospital.  Before we left, we went down to the NICU to say goodbye.  When the nurse learned that I was being released, she took Haven’s CPAP off so I could see her face while I held her.  She could breathe without it, it was just labored breathing.  “Momma needs to be able to see her baby,” she said with a smile.

First Time No CPAP

She handed her to me, and I started crying.  This was the moment I had waited for-to hold my baby and to gaze into her face.  I still mourn that I didn’t get this moment right after delivery, but it was maybe even more special because I had anticipated it so much.  The moment only lasted a minute or so, and then she needed to be put back on the CPAP.

Before we left the hospital, we stopped at the in-hospital pharmacy to pick up my prescription, and I remember sitting in the waiting area, with my It’s a Girl! balloon, boppy pillow, and suitcase, and feeling like people were looking at us and wondering where the baby was.  While loading everything into the car, my eyes filled with tears as I thought, we should be driving home with a baby.  As we drove away, I realized it was the first time I would really be apart from her, with miles between us, and she was only 36 hours old.

When we got home, some friends and family had graciously cleaned our house for us.  Josh’s parents had finished up painting in Haven’s room, and my father-in-law had put her crib together.  It was wonderful to be home, but of course it didn’t feel quite right.  It felt normal, but abnormal within the context of my new reality.  How could I sit and watch TV while my baby is in the hospital?  Shouldn’t I be doing something because my baby is in the hospital?  I should be breastfeeding instead of pumping but I can’t because my baby is in the freaking hospital.

The next week and a half is hard to separate by day in my mind, because every day turned out to be mostly the same.  I would get up in the middle of the night, every 2-3 hours and pump.  I had the pump set up next to my bed, and I would sit on the edge of the bed while I pumped.  Bleary-eyed, I would label the bottle, put it in the freezer, wash my pump parts, and crawl back into bed.

In the mornings, I would wake up, shower, and get ready to go.  My Mom and I would ride in her car, and Josh would drive ours so he could leave for work from the hospital.  As we pulled up and parked at the hospital, I would feel so giddy that I was about to go see Haven.  The ride up to the sixth floor, down and around the halls, and the scrubbing in process couldn’t happen fast enough.

As the nurse buzzed me in through the doors, I was greeted with the familiar beeps of the monitors, low lighting to create a relaxed atmosphere for the babies, and the smell of soap and hand sanitizer.  I would find my nurse and get updates from the last few hours.

She had to wear the CPAP for the first three days (the specifics are fuzzy now), then she had cannulas in for a day, then she was on room air.  The last day she was on cannulas, I arrived and saw that they were taped to her face, but not actually in her nose.  I found our nurse, who was tending to another baby, and she said that Haven had actually been pulling them out all morning, and her oxygen levels were staying up without them in, so she was just keeping an eye on her.  She kept her levels up for several hours, so we got to take them off that day!

No More Oxygen

After she was off of oxygen machines, I was able to try to nurse her.  Because she was a preemie, it was a struggle.  I’ll go into more detail in a blog about our breastfeeding journey (I have a ton to say about that), but the short version is this: in the beginning, because she was so little and so sleepy, I would latch her on, and she would just sit there.  For the days that she was still receiving IV fluids, this was okay because she was getting her nutrition there.  As soon as she finished the fluids, though, if she wouldn’t nurse after 20 minutes of trying, we would have to give her a bottle of pumped milk.  Although it was a “slow flow” nipple, the milk dripped out and poured out of the sides of her tiny mouth.  There were times when I was able to get her to nurse for a few minutes, but it was always very weak nursing.

Josh Feeding Haven

Because she was having so much trouble nursing, she went from her 5 lbs 10 ounces birth weight down to 5 lbs 3 ounces.  She was also jaundiced, and spent several days under the bilirubin lights.  Those days were hard, because she had to spend most of the day in the isolette instead of in my arms.

The nurses have the babies on three hour schedules, so every three hours, we would take her temperature, change her diaper, and the nurse would do an exam.  They always weighed her wet and dirty diapers to measure output, to make sure she was getting enough milk.  Then, we would carefully unhook the monitor wires, transfer her to the crib, and roll her to the pumping/nursing room.  After attempting to nurse, then bottle feeding, I would send her back out with Josh or my Mom, and I would stay in the room to pump.  If her bilirubin levels were good that day, and if she was keeping her body temperature well, we could hold her as long as we wanted.

I would usually stay at the NICU from 8 AM to 10 or 11 PM, only leaving during the shift changes, or to run home to eat or eat in the cafeteria.  Leaving at night was always hard.  I remember crying the whole way home one night, and when we walked in the door, my Mom (who had gone back to our house earlier) asked, “Is everything okay?” “It’s just so hard,” I told her.

I often called in the middle of the night for updates on Haven.  They would usually do a blood draw to check bilirubin levels over the midnight shift, so I would call to see if her levels would be good that day, or if she would be under the lights again.  Often, I just called because I wanted to be connected to her somehow.  The nurses were so great, and always reassured me with news on how well she was doing.  One nurse told me, with a laugh, about how she had just gotten done giving her a bottle, and she spit up the milk all over her, some of which had already curdled.

When she was getting close to the end of her stay, all she needed to do was to be able to regulate her own body temperature, and to get on a trend of weight gain instead of loss.  I remember that the day that she got to wear clothes for the first time (after finishing her IV fluids and only had the monitor wires to work around), and the day she moved to an open air crib (when she could regulate her temp) were both really exciting days.

During this time, they allowed us to stay in a room across the hall, so I could try to nurse her overnight.  It was great to have a place to land, and to take a nap if I needed.

On the 12th day, as I walked into the NICU, our nurse walked up to me and said, “You’re going home today!” “Really?!” I couldn’t believe that we were finally going to be able to bring her home.  Haven had passed her carseat test overnight-they must be able to sit in their carseat for 90 minutes without their stats dropping-and she was finally gaining weight.

We hadn’t had a chance to have the carseat base properly installed, so we called around to several fire stations to see if anyone could install it for us that day.  Josh took it to be installed, and I picked out an outfit for her to go home in.  We didn’t have any warm clothes that were small enough for her, so her going home outfit was super random-whatever I could roll up and layer.

The nurse brought her to our room, we strapped her into the carseat, and the nurse rolled her downstairs in a wagon.  The nurse we had had for several days was Filipino, so we talked about the Philippines and Filipino foods while Josh pulled the car up.  It was raining, so we covered her carseat with a blanket and loaded her in.

First Carseat Ride

Finally, we were home.  We brought her inside and set the carseat down on the living room floor for the cats to see.  While it felt amazing to be home, it also felt a little anticlimactic.  I always pictured bringing my first baby home to a house full of family members, but our family had all needed to go home before she came home from the hospital.

Nevertheless, we were home, and I was so thankful.  I was so excited to finally start our everyday lives as a family of three.

Two Weeks