Hello, Cincinnati Children's

WHAT. A. DAY. I thought to myself that I should write this down while it’s fresh, and then realized that I don’t have a single brain cell that feels “fresh.”  All outta those after this whirlwind 8 hours. So, after a night to sleep it out, I can now (halfway) think through all of yesterday, but I am 1000% sure there will be rambling.

Shortly after Dex came home from the NICU, we started feeling a little tremor in his feet, usually while eating a bottle or while asleep. We learned at his 4 month check up that this is called ankle clonus, and while his pediatrician chalked it up to his immature neurological system due to prematurity, she shared that persistent clonus can be an indicator of cerebral palsy. A pediatric neurologist could evaluate him, but the local group is currently on a 6 month wait for a new appointment. So, I asked if we could go ahead and get that process started so that the appointment would be in place when we reached a time that the clonus should be resolved. She agreed, but offered to send us to UVA so that the wait wouldn’t be as long. UVA could see us in September. 

Well, over the course of the few weeks after his 4 week appointment, we had Dex under a microscope. Which leg did he just kick with?  Why are his arms so tight?  He’s so much stiffer than our girls were, this can’t be typical. A therapist evaluating him mentioned him being jerky and high toned, and then it was all we could see. All of these can be because of his prematurity or all of these could be signs of cerebral palsy. 

The girls seeing us off!  They were more worried about this trip than when we went to Europe for 12 days.  I think it had something to do with that baby.  :)

So much of our joy in this delight of a baby was being robbed. I couldn’t appreciate how strong our little fighter is because I just worried he was too strong. So at the advice of my aunt who is a wonderful physician, we contacted Cincinnati Children’s to see how quickly he could be evaluated. And it was days. It was also so comforting that CCH has a world class pediatric neurology department (currently ranked #2 in the US), and so we knew Dex would be in great hands. So, we decided to make the trip to Cincy. 

Which brings us to yesterday.  This one day epitomizes the journey we have had over the last nine months— a day and a burden that feels crushing and yet it is made lighter by the absolute kindness of others.  People are good. And they want to help. And it feels crazy and so appreciated. So Cliff's Notes version, a spouse of Sam’s coworker knew a pilot who flies for Angel Flight, and they reached out and offered to fly us privately to Cincinnati for Dex’s appointment. Did your jaw just drop?  Ours did. We were planning to drive the 14 hour round trip over the course of a weekend or few days. Now, here was someone using their time and resources to bear the travel and cost load for us. No more hotel over multiple days, no more extensive childcare worked out for our girls--we could be to Cincinnati in an hour and come back that same day.  

I am an apprehensive flyer, but knew that this would make the trip so much more bearable for Dex, especially with him still doing so well off of oxygen.  But, as we pulled in to the parking lot by the hangar to board our plane, I almost lost my nerve.  Sam got so much entertainment out of anxiety due to the itty, bitty plane and the horrible weather.  Thunderstorms and rain littered most of the morning.  He may have been most amused by the last will and testament video I sent my sister after this plea.

I hope to take this boy on half the adventures he's already surprised me with.  But, by the absolute grace of God, that minivan with a propeller was not our plane. BLESS.  And our takeoff time of 11:00 a.m. provided the only break in rain for hours.  All my fears dissipated when we walked into the hangar to meet our generous pilot Tom and copilot George and saw a beautiful, shiny, brand new plane.  It is likely the only pressurized plane in Angel Flight's fleet (which made all the difference in determining Dex's flight worthiness), and boy it was beautiful.  When we boarded, it smelled like a new car, and Tom gave us an easy, one hour flight that was smoother than any commercial flight and landed right into Lunken Field with a private Waypoint Aviation terminal that looked like a swanky hotel lobby. 

Dex took his very first flight, and then hopped in to his very first Uber.  We were dropped off in front of Cincinnati Children's Hospital about 20 minutes later, and were all checked in to his appointment.  I can't say enough how grateful I am that we decided to come.



For the last three weeks, my biggest dream was to go to Cincinnati and have Dr. Vawter-Lee say that she hoped we got zoo tickets or something because there was no reason he needed to be seen.  She didn't say that.  But, her assessment of him felt pretty darn close.  Dex brought his A game to the appointment.  I almost didn't recognize him!  She was not able to elicit clonus in either foot (something the pediatrician was able to do easily in June), all of his other reflexes looked normal, she was pleased with his muscle tone, and only made note of the tightness in his right arm.  She wasn't overly concerned with his Grade 1 brain bleeds, but agreed that an MRI may be needed if his right arm didn't respond to the recommended physical therapy as it could potentially be affecting by CP.  Otherwise, she said our baby looked great.  He was seen just 6 days before by another provider noted how high his muscle tone is.  With a week of us stretching him at home, she said his tone looked really good.  At first, she had concerns with him already rolling over (he is ahead of the game on that by every measure-- his chronological age or his adjusted age).  Cerebral palsy babies often roll extremely early because of spasticity.  But, as she laid him on his belly, he popped his head up like the sweetest baby cobra you've ever seen, looked around, pushed his arms out, and rolled over, and her jaw dropped.  She explained that CP babies often do a "log roll" with very little head lifting, but with a big arching of back and flipping over.  He pushes himself over with his head and arms.  And maybe a little help from those ears.  :)  She said it was probably all his time on my chest in the NICU and some added neck strength from trying to avoid his severe reflux.

She shared that he is at a greater risk for mild developmental delay because of his Grade 1 bleeds and also because of his extended oxygen requirement.  BUT NOT SEVERE.  While she still had concerns about his right arm, she said his other limbs look great, so we will follow up in three months.

Dr. Vawter-Lee encouraged us to always seek answers for our little guy, not just accept "oh, it's because he's a preemie," even if that may very well be why. Stuff gets missed that way.  (I think Sam may have laughed in his head and said, "Have you met my wife?  Crazy mama bear extraordinaire?)  She left the room and I cried putting our little guy back in his carrier.  Another miracle over my little boy.  Of course, as soon as we left the building to get in our Uber, I saw that his foot was tremoring in his sleep.  THAT BOY.  I know our battles for him and with him aren't over, but I am writing this post as a reminder to myself.  When I am most afraid for my baby, when I'm reading medical journals at 2:30 a.m., when I am discouraged by the odds he faces, this is my reminder that my little "man of prayer" is a mighty warrior and the Lord has big plans for him. 

By 7:30 that evening, we were safely back at our car at the Roanoke Airport.  What a day.  A day full of blessing and grace for our family.

Still My Boy

Today is hard, friends. It feels heavy, and suffocating, and like we are marching into something bad but just can’t stop it. I’ve spent today in and out of tears, though I have tried my best to keep it from the girls. Maybe this is a time to be thankful for their occasional self absorption?  😊. 

My mommy intuition has felt triggered for quite some time now, so I am not sure that anything tomorrow will shock me. I have researched and analyzed until my eyes won’t stay open in the wee hours of the morning. But, it still hurts beyond belief. As we have watched our little boy overcome obstacle after obstacle and have a medical chart thicker than most adults, we have taken comfort in the fact that he would eventually grow stronger, get bigger, and only little remnants of his prematurity would remain. Now, it feels like the difficulties of the last nine months may have just been the tip of the iceberg, and there is so much of me that wants to say, I can’t do more. I’ve used every ounce of strength and hope and faith and I can’t possibly have a lifetime more. My baby has already been given too much. No more. 

In the midst of my heartache today, there are two things that give me peace. One, I know He goes before us. I know that nothing about tomorrow, nothing about my boy is a mystery to Him, and He is good. Secondly, the sweet baby that I am in love with today will be the exact same baby tomorrow. No diagnosis will change who he is. He will still be my precious little guy that’s spoiled beyond measure. He will still be the same baby that smiles so hard it looks like his face may break.  The one whose head never turns more quickly than it does when he hears his dad’s voice enter the room. He will still be the apple of his sisters’ eyes. He will still be our beloved baby boy. Our Dex. And we will still be his parents who adore him and will do anything for him, just the same as we have been for every single second since we began this fight for him. 

pPROM Awareness Month

We've been a pretty open book about our circumstances over the last few months.  At this point, you may be thinking, "lady, FOR THE LOVE, we know you had a baby.  And it was crazy.  We got you."  We know others may have chosen to not be so public about the struggle, and that's ok, too. 

But, we shared Dex's story long before we knew his name because we wanted to share hope.   

Seven months ago, I had never heard the phrase Pre-Viability pPROM (preterm premature rupture of membranes).  In layman's terms, my water broke before our baby was at an age at which he could be born and have any chance of survival.  My water broke at 38 weeks with both of my girls and they were born that same day, so I had no idea that your water could break and you could remain pregnant.  Maybe you didn't know that, either.  When the doctor told me that my son would either pass away in utero or I would deliver him within the next few days, I was left without an ounce of hope because I didn't know there was a third possibility.  I turned down being induced and asked for the most aggressive action to prolong the pregnancy, but was told it likely wouldn't help.  It wasn't until I asked for prayers for our little guy on Facebook that a friend from middle school youth group put me in contact with a mom whose water broke early and now has a healthy two year old daughter.  While I was crying in my hospital bed, that mama encouraged me to be grateful that at that very second, I was still pregnant and that's all I could ask.  She sent me information on the pPROM Regimen and charged me to prepare to fight for my baby's life, that we could be the ones to beat the odds.  I don't know what I would have done without that conversation, but I certainly want to pay it forward.  When someone hears of a situations similar to ours, I want them to be able to offer hope.  I want them to be able to say "this girl I went to high school with/my old coworker/my friend's daughter, etc. Her water broke at 17 weeks and her baby lived."  Where there is a heartbeat, THERE IS HOPE.

I also believe that sharing about our circumstances is one of the reasons we made it through.  Literally thousands of people have prayed for my son.  People we have never met and probably never will have been cheering on our little guy.  It allowed our family, friends, colleagues, and church to come alongside us.  Our devastation was mitigated by a sea of helpers (read more about that here).  I don't know how someone could get through this experience on their own.

And now that he's home, we still get the chance to share about his journey.  Just yesterday, we were sitting outside for lunch on the patio of Mac & Bob's.  Though we try to keep our distance, Dex naturally gets some extra gazes as he has a few more accessories than the average baby.  The sweet couple next to us began asking about him, and we got to share about his miraculous little life.  We are so proud of him.  As we went to leave, the waitress let us know that our check had been taken care of.  We don't know who did it, but we are so grateful, and it brings me so much joy to see others celebrate my little boy, too.  

So, I'm sorry in advance for all the times you'll hear about pPROM and how it has changed our lives.  We are hoping that in sharing, it can change someone else's, too.  

For more information on pPROM, visit aapprom.org.  

Look For the Helpers

The last six months have been nothing short of excruciating for our family.  For me.  It's just now that we are climbing out on the other side that I can process much of what happened.  I can tell more of our story now because I know the unexpected twist and the most precious ending.  I did bring my son home.  He's here, and he's perfect.  I can't type those words without simultaneous tears of joy.  

The beautiful thing is that this overwhelming joy of his presence covers much of the grief we experienced before.  I'm so thankful for how this miracle has cheapened the devastation.  Yet, I can't think of Thanksgiving and not feel the immediate swell of heartbreak.  My water had broken.  Our son would be born any day, and we would not be bringing him home.  Our girls, who didn't even know yet about their new sibling, would not meet him on this side of Heaven.  It was an aching, crushing pain.  

But, I also can't think of that time without being overwhelmed by love.  The kindness that my family was shown humbles me still.  Mr. Rogers' mom was right.  In the midst of our grief, there were the helpers.  Incredible, often unexpected, people who chose to show up and love our family.  

I was told that my son would not make it at 1:30 a.m. on Sunday, November 19, as I sat alone on in a triage room on the Labor & Delivery floor.  I was in shock and didn't have the strength to talk to each of my family members individually, so I sent a text letting them know the dire situation our little boy faced.  Without my asking or my knowledge, my mom and sister showed up at the hospital before my lunch tray was served.  They literally woke up, saw the text, and got in the car and drove from states away.  In our dark, quiet room with the shades drawn, they didn't give us platitudes, they just sat on that outdated loveseat and cried with us.  They pushed nurses for answers and cheered with us that our little boy still had a heartbeat.  They stayed with us for a week, and with my dad, took over my kitchen and served Thanksgiving dinner for my family.  That first week of devastation is a heartbroken blur, but this I know-- my family carried us
.

Every day after, I cried from both grief and gratefulness.  On the days with doctor's appointments where it felt like we were drowning, we were buoyed by flowers that showed up at the hospital from my coworkers and our friends who have walked through even deeper grief of their own.  People brought food-- so much food-- so that I could stay on bedrest.  A high school friend of Sam's brought dinner and a giant crate of gifts for our girls, being sensitive to their hurt and my need for quiet, hands off ways to entertain them.  We had friends bring cupcakes to celebrate making it to our "steroids day."  Coworkers and college friends sent gift cards for meals and groceries.  A friend brought baked Christmas cookies and all the supplies so that I could make memories with my girls without the effort.  During those dark days, we had some people not show up quite as much as we would have thought (we get it: no one knew quite what to say to us), but my goodness, there were people who showered us with kindness who we barely knew, who we hadn't seen in years, who literally shocked us with their thoughtfulness.  It seemed like every day when Willa ran mail up to my room, I'd just open the cards and cry.  And then I'd tape them to the electric fireplace beside my bed, so that as I sat there for another day, I could look over and be encouraged that I wasn't the only one that cared what happened to this baby.  Others were fighting with me.  

The generosity didn't stop when I was admitted to the hospital.  My dad, Donna, and Nik drove up from South Carolina to love on the girls while I packed.  It allowed me the space to grieve this upcoming time away from my girls without having them underfoot to see it.  He stayed so that he could drive me over to the hospital with a ridiculous miniature Christmas tree to get me settled in my room, and wouldn't leave until after those first rounds of monitoring and vital checks came back normal.  When I couldn't eat for days during my hospital admission in November, all I wanted was fruit and in a state-of-the-art hospital, the only things we could find were old fruit cups and an overripe banana at the cafeteria, so my second day in the hospital this time, my dad sent an edible arrangement, just to make sure I had my fruit.

At least once a week, someone says "I don't know how you did it.  I would've gone crazy after seven weeks in the hospital."  I can tell you how I did it.  YOU.  You prayed for our family--me, Sam, our girls, and our unborn son.  You brought Buffalo Wild Wings by and delivered pizza to the hospital so that our family could eat dinner together, huddled around my bed in room 1345.  You came and sat with me.  You brought me Honeybaked Ham and talked to me about work so that I could feel some normalcy.  You visited every time you were in town, even if you were from hours away and we hadn't seen each other in months.  You sent flowers.  You fed my family at home three nights a week for months.  You typed up messages on Facebook, sent texts to ask how I was, mailed letters to the hospital (one volunteer asked how long I'd been there because she'd never delivered more than one piece of mail to someone and she was in my room every week).  You even sent Kendra Scott earrings to make me smile and so that I could feel all fancy on my 57th consecutive day of wearing leggings.  You brought coloring books and games, so that my girls could snuggle up on my hospital bed with me and play.  You sent Audible subscriptions so that I could listen to books when my arms were too weak from bedrest to hold up books long enough to read them.  You brought a jar with Scripture written on small pieces of paper, so that everyday my family and I could pull a verse and be reminded of His promises to us.  Doctors would plop down on the loveseat during their weekend on call and pass the time with me in between deliveries.  Nurses learned our names and listened to our story.

I have never felt more hurt than I did in November and December.  But, the beautiful thing is that I have also never felt more loved.  I pray my children never face a devastating natural disaster or a shattering personal loss.  I hope they never have to be swallowed up in grief.  But if they are, I hope they're able to stop long enough to look for the helpers.  They'll be there.  And if you let them, they'll carry you through.  

7 Weeks Home

We’ve had Dex home for 7 weeks now, and we fiiiiiiinally feel like we’ve gotten in the swing of things. I’m still amazed at how many reach out to us to ask how he is. How we are. It means so much to have others cheering for him. 

Surgery threw us for a loop, but much of what we are working out now is the same as the NICU. Lungs, eating, weight gain. Lungs, eating, weight gain. 

The silver lining of surgery (other than that our little dude rocked it, and we got to see our favorite nurses from L&D and the NICU) was that while we were in the hospital, we found out that Dex has a pretty severe milk protein/soy allergy. Calprotectin measures intestinal inflammation, and the upper limit of normal is 160. Dex’s was 883. So, in an effort to secure his status as Million Dollar Baby (no, really, this priceless little babe may do it!), he’s on Elecare, which is an amino acid based formula that’s $44.97. A can. 🙈. He’s now been on it for 4 weeks, and we are seeing a difference in his comfort level and weight gain. Yay!  When we went for appointments the last two weeks, he finally hit the ounce a day goal. 

We met with pulmonology the week after his surgery, and they gave us the ok to begin weaning his oxygen. Ahhh!  Neonatology had warned us that sometimes pediatric pulmonology is slow to wean, but his doctor was impressed with how he did with surgery and his first month home. He came home on 0.5L flow and is now down to 0.25L. Despite being “allowed” to wean him to 0.125L, Dex is really the boss and will let us know when he’s ready. I don’t think we are there quite yet, but once we are, he will be allowed to try 2 hour stretches without it. 😱. He’s 16 weeks old, and I’ve never had a tube free little face. I’m 100% positive me crying is a bet you’ll want to take. This sweet boy has been through so much, and I’m just so proud of him. 

This is our first week since he’s been home that we haven’t had a doctor’s appointment, and that feels pretty monumental. Even though he is only 8 weeks adjusted, he’s doing many things that a term 3 month old would do (his chronological age). At his appointment, he sat on my lap and tracked his pediatrician around the room. He’s rolling over, cooing, and even cracked a grin for his cousin and me this weekend. While he stared down his doctor, she said, “he looks just like a term 3 month old!  Just a miniature one.”  😂. He is still a tiny little tater tot (just reaching 10 lbs!), but I continue to be amazed by all the ways he beats the odds. 

My little boy that wasn’t supposed to come home with me is here.  And he’s thriving. God’s sweet grace. 

He still has battles ahead. Sometimes it’s tough to sort out what’s from prematurity, what’s from my water breaking so soon, and what’s just who he is. But, he’s a tiny little fighter and oh so loved, so we will just keep taking things as they come and be thankful he’s here to face them. 

I don’t think I could ever be prepared for all the ways Declan has turned our world and our family upside down. A baby boy has never been more loved by his sisters. He’s the apple of Harper’s eye, and every day when she comes home, she rushes to wash her hands and change her clothes and then demands to know where “her” baby is. Her mini-mothering skills have been the only reason our family has eaten something other than takeout over the last month and a half. 

The last six months have changed me in many ways, but most of all they’ve strengthened my sense of grace and patience (which I’ve heard is a good thing with three kiddos). No Pinterest-worthy preschool class present?  Oh well. Baby crying all night?  Bring on the snuggles. When you’ve experienced imminent loss, it helps everything become Big Picture. Our baby is home, our girls are healthy and happy, and we couldn’t be more thankful.