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Battle Scars: C-Section Awareness Month

“We recommend that babies with spina bifida be delivered by c-section,” the high risk OB told me.

Two weeks before, we had learned that our baby had spina bifida, and we found ourselves seated on a comfortable couch, across from the high risk doctor.  We had just finished a consultation with the neurosurgeon, neonatalogist, high risk OB, a genetic counselor, the Spinal Differences Clinic coordinating nurse, and a radiologist.

“Is there any chance at all of a vaginal delivery?” I asked. “Or is it 100% that I would need a c-section?”

“Vaginal deliveries do sometimes happen with spina bifida, but it is more common to have a c-section.  The defect is more protected that way, and the hope is that there would be less nerve damage. I can understand your desire to have a vaginal delivery, but you don’t want to get to some challenges down the road, and wonder if you had had a cesarean, if the outcome would have been better.”

I couldn’t argue with that logic.  Because I would totally be the person that would have blamed myself if I didn’t feel like I had done everything I could to give Eisley the best outcome.

I was disappointed that I would be having a c-section, but also terrified about the process.  I had never had any surgery in my life, so it was a big, scary pill to swallow.  But as the weeks and months passed, I got used to the idea.  I loved that we had a planned date (as long as I didn’t go into labor early like I had with Haven-but thankfully my weekly progesterone shots helped prevent that) because it made it easier to plan for my Mom and Mother-in-law to come to support us and help with Haven.

The morning of the planned c-section came, and after saying goodbye to a sleeping Haven, I stood in the foyer of our house, with Josh, my Mom, and his Mom.  As I clutched my pillow to me, about to leave for the hospital, tears began to well in my eyes.  I was excited to meet her, of course, but for a moment, the fear took over.

We made it to the hospital, and my stomach was doing all kinds of flips (that were not all due to the baby), as we checked in, I changed into a hospital gown, and they began to prep me for surgery.

I was wheeled down the hall, and we arrived at the operating room sooner than I expected.  Another wave of fear.  I remember being caught off guard by the blast of cold air as I hobbled through the door.  It felt like a deep freeze in there.  How the surgeons’ hands can grasp the tools without freezing up, I will never understand.

The anesthesiologist arrived and placed my spinal block.  It took three tries to get it right, but it actually wasn’t too bad.  Just little sticks in my back.  The medicine took effect immediately, and it was such a surreal feeling to instantly lose almost all sensation to the lower part of your body.

They helped me lay down on the table, because I’m pretty sure I would not have been able to do it myself, even if I had total feeling.  That table was tiny, and I was 39-weeks-pregnant-huge.

The curtain was raised, and my arms were strapped out to either side of me.  It was a very vulnerable feeling-not having control of my body, being strapped down, and with my arms outstretched.  Another wave of fear.

I was about to be willingly cut open on an operating table for my daughter.  It was then that I felt the faintest whisper from the Lord: I did this for you. My body was broken for you. In that moment, I understood just a little bit more about the Lord.  I loved Eisley so much that I was willing to be cut open for her.  And Jesus loved me (and you!) so much that He gave His body and His life for me.  What an amazing love.

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If you have read Eisley’s birth story, you know that I bled…a lot during the surgery.  I purposely did not look at the floor as they wheeled me out of the operating room, but according to one nurse with no filter, it looked “like a bloodbath”.  The blood loss caused my iron levels to drop dramatically, so I had to be on iron supplements for a few weeks after.

I knew from hearing other moms’ experiences with c-sections that movement was key to recovery.  Even just getting out of bed was difficult for the first couple of days.  But getting out of bed meant that I could be wheeled down to the NICU to see Eisley, so I did it.  One of the nurses told me that their c-section moms (at the children’s hospital where they deliver the more critical babies) usually recover much quicker than other c-section moms in the community, because they have to get around to get to their babies.  I was glad for the motivation, because otherwise it would have been more difficult to heal.

After about a week postpartum, I was cleared to drive and do most things as I would normally.  I was still careful with lifting Haven, who was only 19 months old at the time, so she still required lots of lifting and cuddling.  But I actually felt pretty good, considering I had just had major surgery a week before.

April is c-section awareness month, so I wanted to share a bit more about my experience.  Believe it or not, there are many out there that think it is the “easy way out”.  Umm, just no.  It took every ounce of courage I had, plus more from the Lord, to walk into that OR.  C-section moms are warriors, plain and simple.  We’ve been to battle for our babies, and we have the scars to prove it.

Would it have been my first choice?  Definitely not.  Would I do it over again for Eisley?  In a heartbeat.

Screenshot-2018-4-10 Hayley on Instagram “April is c-section awareness month We did give birth to our babies We have the sc[...]

 

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When Your Child’s Disability Becomes Visible

The indoor playground at the mall was crowded with the typical, just before naptime crowd.  Moms sat chatting on the benches while their kids played on the squishy, soft sculpted foam ladybugs and slides made to look like logs cut in half.

Josh was watching Haven play, while I trailed along after Eisley, making sure that she didn’t crawl too far away from her little backpack containing her feeding pump and bag with her toddler formula that she receives through her NG tube.

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While I helped Eisley stand against a bright blue beetle, a toddler waddled over to us, intrigued by the cool little backpack sitting on the floor.  She grabbed the syringe of water sticking out of the front pocket, and her mom swooped in from the side, and said, “Oh, that’s not yours!”

As she handed the syringe back to me, she asked about Eisley-what her name was, how old she was, you know, just the regular mom to mom chat.

“She’s 17 months,” I told her.

And then, just for the shortest moment, I saw the flash of confusion across her face.  After a beat, she told me that her little girl, (who was much bigger in size and proficiently walking around), would turn one in a few days.

“Oh! Happy birthday!” I told her.

We parted ways after agreeing that it was just about naptime for both of our girls, and I brought Eisley to a new section of the playground.  But I couldn’t help feeling just a little bit alone and just a little bit…visible.

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Eisley is getting to the point now that her disability is more obvious to those who don’t know her.  She wears braces on her feet, has an NG tube on her face, that is sometimes attached to a long tube and a little backpack, and she is much smaller than other kids her age.  The mom I was talking to was taken aback when I told her Eisley’s age, because she looks and moves more like a 7-8 month old.

I am usually not very sad that Eisley has a disability.  In fact, most of the time I either forget about it, or I treasure that aspect of her because it helps make her who she is.  But sometimes, especially now that she is to the age where her typical peers have far surpassed her in gross motor skills and in size, I get just a little sad, sinking feeling in the pit of my belly.

Seeing kids younger than her running around is a reminder of where she would be, of what she would be doing, if she did not have spina bifida.  And seeing others see that makes it even harder, because they don’t get the chance to see who I see-a girl who is strong, funny, smart, and loving.

As I was disconnecting Eisley’s feeding pump after her feed was done, an older gentleman came up to me.

“Ma’am, do you mind if I ask about the…”, he asked, pointing to his face, indicating Eisley’s NG tube.

“Oh, not at all,” I told him.  I explained that she was born with spina bifida, so she had a portion of her spine surgically closed up after she was born.  She has some challenges with mobility, and also some oral difficulites as a side effect, which causes her to need supplementation with a feeding tube.

“Oh, that’s a feeding tube?  I thought it was oxygen,” he told me.  He went on to ask if he could put her on his prayer list at church, and of course I agreed.

“She’s doing well, she just needs some help with some things like eating and getting around, so we could always use prayers.”

Those kinds of interactions usually don’t bother me.  I love to educate and advocate.  The more that people know about spina bifida, and see that disablilty is not shameful, the better the world will be for Eisley and others with disabilities as she grows up.

As she gets older, and is using her walker full time, it will become even more obvious that she has a disability.  Maybe I’ll get more used to the stares and feeling like we are under a microscope, but maybe you never get used to those things.  It’s all a learning process, that’s for sure.

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February 3rd

**Trigger Warning: Miscarriage**

 

 

“Is it okay if I go upstairs and rest a little while?” I asked Josh.

“Alright,” he told me.

I was feeling in a funk this morning, and I wasn’t sure why.  I had opened all the blinds before dawn, in anticipation of the sun rising over the houses across the street, and the amazing natural light that our living room gets during the day, but the day turned out to be cloudy.  Maybe it’s the clouds, I told myself.

I was tired, but didn’t feel like sleeping, so I laid in bed and scrolled through my phone.  It wasn’t until I saw a video shared by a friend that it dawned on me.

Today is February 3rd.

The video was a musician husband who had written a song for his wife, and the two babies they had lost to miscarriage.

February 3rd stings every year, because this is the day I began miscarrying our first baby, Ellie Hannah, four years ago.

Four years ago feels like so many lifetimes ago.  It was the time before parenthood as I now know it.  The time when we anticipated this season so hopefully, with such naivity.  I was pregnant, so of course that meant a baby in my arms in the end.

I still remember the way it felt the first time I realized something was wrong.  I was at a friend’s house, celebrating the birthday of another dear friend of ours.  I came out of the bathroom holding back tears.  I was scared to move, scared to do anything that might jeopardize the little life inside of me.  I did not know at the time that there was nothing I could do or not do-she had already passed.

The next few days were ones of grief, physical pain, and the loss of a dream.  For weeks after, I slept with the orange and white elephant blanket that I had chosen for her after I had gotten a positive pregnancy test.  It was all I had left of her.

As time has passed, and my days are filled with caring for Haven and Eisley, Ellie seems farther away.  I don’t know if it’s because my experiences with Haven and Eisley have far exceeded those short weeks with Ellie, or because I have buried many of those memories and emotions deep in my heart in an act of self preservation.  Maybe it’s both.

But, as difficult as it is to admit, I don’t think of her every day.  In fact, sometimes I forget that we went through such a traumatic experience four years ago.  So when memories come flooding back, especially on February 3rd, it is difficult to process.  Reminders of the grief.  Guilt over not always thinking of her.  Joy that she is with Jesus.  Terror upon thinking of it ever happening again.

Grief is so strange.  Sometimes it is all encompassing, and you feel like you can’t breathe for the weight of it.  And sometimes it quietly retreats to the background.  Today it feels like a dull ache.  Not as painful as it once was, but enough to color the day with sadness.

Tomorrow will easier, but for today, I am remembering Ellie.  Her life was short, but it sure changed mine.  Fly high, little one.

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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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