Our Visit to Riley Children’s Hospital

“I’m still just a little concerned about his head,” our pediatrician said at Cooper’s two month check-up.

She was moving her hands around his head.

Up and down.

Side to side.

“And it’s better to be safe than sorry, especially if his plates are overlapping or closing too quickly,” she added. “It also looks like he has some flatness.”

We definitely noticed his head shape as well. Poor kid had a combination of a cone head + flat head. At least he’s adorable!!

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The cutest.

“So I’d like for him to see a neurosurgeon for a second opinion,” she said.

My heart sank. I looked over at Justin and he looked nervous too.

Neurosurgeon? Like – someone who performs brain surgery!?

Neither of us said a word – probably because we were both silently panicking.

“And that really sounds scarier than it really is,” she added.

I tried to remain calm and asked, “So, what do you think will happen?”

“Well,” she said, “Most likely he’ll end up in a helmet. Worst case would be skull surgery to fix any overlapping plates, especially if they are closing quickly. But I don’t think that will happen. He’ll probably be in a helmet for a while, which really isn’t a big deal these days. He’s a very healthy and happy baby, so just try not to worry and we’ll see what the specialist says. I realize that is easier said than done.”

I looked over at my sweet baby boy, who was smiling and flipping his arms in the air. I simply couldn’t imagine him being put under with anesthesiology and having skull surgery. I know that was the WORST case scenario, but that’s where my mind drifted first…

But I quickly caught myself from diving deep into my own mind and worries, and snapped back to reality. I tried to remain calm and picked up my baby boy to snuggle him and get him dressed again. Babies feed off your emotions, so I did my best to smile and be positive.

“You seem to be taking this better than I expected,” Justin said as we were walking to the check-out.

“Well,” I started, “We can’t worry about anything until talking to the specialist, you know?” I said. “It’s all out of our control – so we’ll just do a lot of tummy time and try to stay positive.”

“I’m proud of you,” Justin said and kissed my forehead. “You’re such an amazing and strong mommy.”

Remaining positive was only easy to do for so long.

The weeks leading up to the appointment seemed to last forever. And my heart and mind got heavier with each passing day. I would get sick to my stomach just thinking about our appointment with the neurosurgeon.

And then I would play that awful game of “WHAT IF?!” in my head.

So on top of my anxiety about his doctor’s appointment, I was sleep deprived and battling a bit of depression, which was probably from the lack of sleep, weather, or postpartum hormones…probably all 3!

And even though I realize it’s silly and all of this is out of control, I blamed myself for his head shape and flatness for the longest time. I should have done more tummy time. I should put him in his crib sooner. I should have….

Thankfully Justin and a few close friends / family  helped me get over the mom guilt and focus on what matters! Spending time and loving on my happy, beautiful baby boy!!

coop and mom

We look a lot alike, can’t you tell!?

Two days before his appointment, I had a call with my Grandma Kaye.

“I’ve had January 24th on my mind ever since you told me about his appointment,” Grandma Kaye said. “And I’ve been praying for him so much.”

“Awww,” I said. “Well thank you, grams! We really appreciate it.”

“And every single time I walk past that picture you got me of him for Christmas, I kiss it,” she said. “You can see so many lip prints on that picture frame! And the other day, I had to pee so bad, but I couldn’t walk past his picture without kissing it! So I actually tinkled my pants a little bit because I didn’t get to the bathroom in time, but I just had to give my Cooper a kiss.”

She made me laugh and our conversation helped ease my mind.

The next day, my work family and friends really went the extra mile to lift me up. My heart seemed so full to have so many people thinking and praying for a positive appointment at Riley.

“Enjoy Coop Day tomorrow,” my boss said as he was leaving for the evening.

“I’ll do my best,” I said. “But tomorrow is his appointment…”

“Don’t worry!” he said. “Everything will be great.”

“I hope you’re right,” I said and thanked him.

***

We woke up Friday morning bright and early. Coop is such an early bird, which amazes me because he hardly sleeps at night.

Thankfully he is also a morning baby – so he is very happy and excited to start the day. When I go to pick him up from his crib, he gets so incredibly excited to see me. His face lights up with a giant smile and he starts kicking and moving his arms up and down.

Almost as if he’s saying, “Let’s do this, mom!!! I am ready to start the day with you!”

He melts my heart and reminds me to appreciate the little things and simple moments, such as an early (early) morning smile from your happy baby.

So I got him dressed in a super cute outfit and we snuggled the entire morning.

My love.

My love.

Our appointment was at 2 p.m., but they told us to arrive at 1:30 for paperwork. So naturally, I made Justin leave the house around noon so we weren’t late and didn’t have any issues with parking or finding the suite.

Pulling into the parking garage, I got butterflies when I say the sign for Riley Children’s Hospital. I suppose it’s because you always hear about the sickest children and children with cancer visiting Riley.

And now my sweet Coop was visiting this hospital…certainly not for an extreme disease, or life-threatening illness…but I still had a heavy heart thinking about all of the children who at this hospital. I felt sad and lucky at the same time.

We found a parking spot at the very top level, so we ran across the parking garage because it was so incredibly cold. Coop was still sleeping, but I knew the cool air would wake him up quickly! We got into the elevator and Justin tried to get a red wagon to put Cooper in while we went across the hospital.

“Don’t get one of those,” I said. “That’s silly! His carseat isn’t THAT heavy!”

Justin looked at me in disbelief.

“Oh yeah?” He said. “Do you want to carry him!?”

“I doubt the suite is that far away – you’ll be fine,” I said.

Poor Justin. I was wrong.

1) The carseat IS heavy with a 16 lb + baby.

2) The suite was nice hike away from the parking garage.

But he didn’t complain much and we made our way through the hospital.

As we walked through the halls, I found myself studying each adult and child we passed. Trying to imagine why they were there….

Did they wonder why we were here?

What kind of battles are they facing?

I saw children in wheelchairs.

I saw children running and playing.

I saw positive and upbeat parents.

I saw parents that looked as if they’d been living at hospital, buzzing past us with a red wagon full of food and clothing for the week.

Justin and I didn’t say much as we soaked it all in and ventured to our area.

“We haven’t even seen anything super traumatic or been to the area of the hospital where children have cancer,” Justin said. “But I’m already realizing how lucky we are….”

I was just thinking the exact same thing…

Eventually we got to right floor and we checked in. Cooper was wide awake, so we tried to pass time playing with Captain Calamari and watching Coop do toe touches from his carseat.

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Hanging out with Captain Calamari!

He’s obsessed with his feet.

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Toe touches!

An hour passed.

A dirty diaper and bottle later, we were still waiting to go back.

We were starting to get restless, bored, and hungry.

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Beautiful even when snarky.

“I should have packed snacks for us,” I said. “I can’t wait until Cooper is older so we can eat his snacks from the diaper bag.”

“Yeah,” Justin said. “Those puffs are pretty good. You ate all of Bryars blueberry ones we watched him.”

“Okkkkk,” I said. “I didn’t eat all of them!”

“Close enough!” Justin joked.

Coop was wonderful the whole time – he didn’t fuss or cry while waiting. I think we wanted to cry more than he did…but they finally called us back to see the doctor.

He got weighed and measured first.

“He’s a handsome little guy,” the nurse said.

“Thank you,” Justin and I said at the same time.

“And oh my gosh – just look at those eyelashes!” she said. “He’s gorgeous!”

The stats weren’t too surprising because we had his four-month check up the previous week.

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Coop at his 4 month check up.

16 lbs and 26 inches long.

The nurse asked a few questions and told us the doctor would be with us shortly. She complimented us again on having such a beautiful and happy baby.

Another reminder of how blessed we truly are…

Sleepy and hungry - both of us!

No more pictures, mom!

A few minutes later, I started to feel my belly rumble.

“I am so incredibly hungry,” I said to Justin. “Seriously, do you think they have snacks here?”

Our stomachs were both growling from our light lunch. And I was doing my best to stay positive and not turn into a Wolverine, which I usually do when I am hungry.

We started passing the time by discussing what we were going to eat once we left. And that honestly helped me from thinking about the possible outcomes from today’s visit.

The door opened and our doctor walked in. She immediately apologized for the long wait. The weather had caused a lot of accidents and late appointments. We certainly understood …and being snarky or mad about the situation wouldn’t have improved our experience.

She looked at Cooper, he was standing up on my thighs, and said, “Well, I know exactly why you’re here!”

OH GREAT- he needs surgery. It’s awful. I knew it.

“But it’s really not that bad,” she said.

Nevermind. I’m a psycho and always overreact.

Coop smiled at her.

She studied his head- from the side and then looking down. She did a few other tests to make sure he could move his neck well and to see how well his eyes would follow her.

“This is the fun age,” she said. “Where they aren’t afraid of the white coat yet!”

Coop was doing great and kept smiling and trying to talk to her.

“I am surprised at how alert and social he is for his age,” she said.

I always feel so proud when people talk about how happy, alert, and social Cooper is. I know some of it is simply his personality and genetics, but I work really hard at talking to him, smiling at him, loving on him, and reading to him.

Happy boy.

Natural at selfies already; such a happy boy.

“Can I take you from mommy?” she asked Coop.

Coop didn’t complain and she felt around his head a little more.

“You can tell that he’s flatter on his left side vs his right side,” she said. “But that’s really not uncommon. And it’s not an extreme difference.”

She went on to tell us that (insert the medical term of flat heads) has increased by nearly 800% since parents have started putting their babies to sleep on their back instead of their belly (to help reduce the number of SIDS deaths).

“Honestly- children shop for helmets as much as they shop for new school shoes,” Dr. Akerman said.

She was so honest, kind, and compassionate when talking to us about Cooper.

She found a baby skull replica to show us and walked us through some of the medical terms and science behind everything. I won’t even try to repeat what she told us or what everything truly means, but for now…I can tell you that she seemed pretty positive about Cooper’s prognosis.

His head shape and flatness has actually improved over the past two months as he has gotten stronger and better at tummy time.

“I am glad to see that he’s improving,” she said. “I doubt you’ll need surgery or a helmet. But let’s start with some positional therapy and just keep doing tummy time.”

She gave us some handouts to review and asked if we had any final questions.

“Even though I’m fairly confident he’ll be just fine, I’d still like to see him in a few months to see his progress,” she said.

We made an appointment for March and thanked her for being so kind and positive.

And my heart and mind finally felt more at peace.

Walking out, Justin and I both decided we needed a snack. We noticed a Red Wagon Cafe earlier so I suggested we stopped there. Cooper was asleep, so I went to sit down with him while Justin picked us up something.

“Don’t let me down,” I said. “Get something good!”

Justin came back with a toasted turkey sandwich on whole grain bread with lettuce, tomato, and light mayo – my absolute favorite!!! The sandwich was already cut in half, so I wasted no time reaching for the biggest half of the sandwich.

Justin immediately laughed, “Wow- you must be hungry! You didn’t even ask which half I wanted…you just went for it!”

We both laughed and plowed through the sandwich.

At one point, I looked over at Justin and started dying laughing. I choked on my sandwich a little bit as I tried to tell him, “OMG – you have a gigantic booger hanging out of your nose!”

“WHAT?! NO!” Justin said, completely embarrassed.

He reached up and pulled out a huge…piece of lettuce, which made me start laughing even more.

We laughed so hard that we cried.

My cheeks and belly hurt from laughing so hard (and eating so quickly).

I looked at at Justin and felt more in love with him than ever before.

“I love you,” I said.

“I love you too,” he said and squeezed my hand and gave me a kiss.

Maybe it was the monstrous lettuce booger.

Maybe it was the new appreciation I had for our health.

Or maybe it was the uplifting news about Cooper’s prognosis.

But as we sat at The Red Wagon Cafe in Riley Children’s Hospital, I felt happier than I’ve felt in months.

Thank you to everyone who took time to pray for us or send us positive vibes – we have appreciated your love and support so much.

I also can’t say enough positive words about the staff, nurses, and doctors at Riley Children’s Hospital. They all greeted us with a smile and treated us with compassion and respect. I recently won a fundraising project at work and we got to pick the charity we wanted to donate our contribution to…and without hesitation, I picked Riley Children’s Hospital.  I’ll continue to support the hospital and its mission however I can!

See you next month, Riley. Hopefully we hear good news about Coop. But if not, you’ll be seeing some pretty rad family helmet pictures here real soon.

Much love,

Ashley

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