How my friends’ experience with child loss continues to inspire others

This weekend my friend’s daughter celebrated her 4th birthday. Her brother and sister celebrated from above in heaven. Peyton, Parker and Abigail were born on June 23, 2013. It’s a phone call I’ll always remember—that my dear friend went into labor with her triplets at only 22.5 weeks gestation. pandpIn that moment, prior to meeting my husband and prior to becoming a mom myself, I thought I understood their pain, suffering and disbelief. Even four years later, those moments in the NICU, seeing Abby’s memory box in the hospital the first time I visited, saying goodbye to Parker, attending two baby funerals in two months…all seems so fresh.

Peyton has been a pillar of sunshine, sass and all that’s beautiful in the world since she decided to make her grand entrance. While living in Springfield, Illinois her mom and I bonded over our TV careers and love for watching the Bachelor with a glass of wine and some homemade brownies.

Week after week I watched Peyton surpass expectations and reach unthinkable milestones. One of my last nights in Springfield, prior to moving to St. Louis I went over to Stacey, Ryan and Peyton’s house to bid them farewell. Peyton crawled to the door. photo by J Elizabeth Photography I thought THAT was amazing. Little did I know what this darling little girl would be capable of four years down the road. I watched in amazement last summer as she walked down the aisle as my flower girl. To say she’s special to me, is an understatement.

I found it eerily ironic that Stacey and Peyton paid us a visit to meet Reid on May 27. Reid was 60 days old at that point. IMG_8254Stacey and Ryan’s son Parker only lived til he was 55 days old. Around that time, I would look at my son and think how unimaginable it would be to have to say goodbye at that point. How heart wrenching it would be to know that your little boy never got to experience fresh air on his cheeks or leave the hospital as most babies get to after a couple of days. The list goes on and on. While the visit with my dear friend and Peyton was sweet, Stacey and I shed some tears thinking about sweet Parker.

As my friends celebrate and honor Peyton, Parker and Abby’s 4th birthday, they are also celebrating a year of their non-profit charity, Triple Heart Foundation. The foundation provides peace of mind to families who are in the trenches with little ones in the NICU. They just launched “55 Days of Summer.” 55 days of summerIt’s more than just a fundraiser, it’s a chance to see how random acts of kindness can help make our world a better place.

“While being a parent to children on earth and in heaven is difficult, all three of our children gave us new purpose in life. We were helped tremendously during the summer and fall of 2013. Strangers sent us gifts, cards and lifted us up in prayers. So, we want to pay it forward through Triple Heart Foundation,” said Stacey.

They have a huge goal—but, I know they will reach it…because that’s what this family does. They continue to beat the odds and inspire others. They are looking to raise $5,500 this summer. Donations can be sent through their website, you can send books, or simply spread the word. Every heartfelt effort counts. For a list of book suggestions or to donate, click here

IMG_0132At Peyton’s birthday party yesterday, as I held my son Reid…I looked at Stacey and Ryan with an even greater sense of respect and love. This family is the perfect example of overcoming obstacles, taking hardship and finding ways to turn that sadness and perspective around to help others. The flashbacks of Peyton fighting for her life in the NICU were overshadowed by watching her struct around with her friends in the backyard and laugh as she went down the bounce house water slide without a care in the world.

Why a trip to Target is something I’m celebrating with my son

Going to Target. Not a big deal, right? For me, it took 11 weeks until I felt confident bringing my son to the store with me. That may sIMG_9368ound crazy. But, I have my reasons. Throughout my entire pregnancy, in order to keep my Crohn’s disease in remission, I chose to follow doctor’s orders and continue taking my biologic drug, Humira…along with a pill called Lialda.

I’ve been giving myself Humira injections since 2008. Since I started the shots I’ve known that the drug suppresses your immune system. If someone is sick around me, I am much more susceptible to catching their illness.

So, as a first-time mom…you can imagine why I was a bit apprehensive to take my son out in public or allow just anybody to hold him. My pediatrician let me know at his 2-month appointment, that his immune system will be suppressed until he’s about 6 months old since Humira passes through the placenta. My gastroenterologist team agreed with my pediatrician that Reid should not receive live vaccines (aka the Rotovirus) and that until he was vaccinated at 2 months, he needed to keep a low profile for his own protection.

Humira is “safe” for pregnancy …that’s the hope anyway, which is why I chose to only breastfeed Reid for three days. Gave him the colostrum (aka liquid gold) and then, as hard as it was (and much more emotional than I thought)… we started him on a bottle since there are no long-term pregnancy studies associated with the injection and breastfeeding.

This week, I decided to take Reid to Target on a whim. I was driving home from my mother in law’s house after a nice visit. image1 (1)Reid was asleep in the backseat. His next feeding wasn’t for an hour. I figured this was a good time to try this out. The experience of putting my son in the cart and bringing him into a store for the first time was empowering and exhilarating. I kept checking on him and smiled to myself as my new little shopping buddy had sweet dreams as I filled the cart around his car seat.

I know keeping him “in a bubble” isn’t going to be healthy for either of us. Staying out of public stores—whether it was a grocery store, the mall…or Target…for 11 weeks hasn’t been easy. But, my husband has been incredibly helpful and we take turns running errands when need be and leave Reid at home.

For those who haven’t walked in the shoes of someone with a chronic illness or someone whose child is immune suppressed (no matter what the reason), it may be difficult to understand the importance of this decision. When you live with an illness every day of your life for nearly 12 years (whether you’re in remission or not) it’s part of your daily life and you learn to make sacrifices to protect the healthy days you have. FullSizeRender (1)I know I’ll be on Humira for my future pregnancies and no matter how big my family is, we’ll find a way to keep a low profile when it matters most.

I’m inspired by my Godmother who raised three kids four doors down the street from me and spent YEARS without going in public since her middle son was the eighth newborn heart transplant in the United States. The slightest cold or infection could have taken his life. As cousins who grew up more like siblings, we entertained ourselves at home or outside in the backyard. We took every precaution to keep him healthy and safe. I wore masks for years as a little girl playing alongside them.

You make your situation doable and do what it takes, because nothing is more important than health and family. My cousin Bill was FIVE years old before he went to a movie theater. Him and his siblings saw Pocahontas with my siblings and it’s a moment we all remember to this day.

I’m glad my husband and I have waited as long as we have to bring Reid out in public. It will do my heart good to know when Reid’s 6 months, that his immune system will be like most other babies on the block.

Just like with chronic illness, with motherhood, it’s imperative to celebrate every small victory and accomplishment along the way, no matter how big or small it is. Now, for that first trip to the grocery store…

Crohn’s and Caffeine: The delicate balance

Sleep deprivation and coffee go hand in hand for most parents out there. But, for those with Crohn’s, it can be a recipe for disaster. My son is almost 11 weeks and has been spoiling us for the past four or five weeks, by sleeping through most the night. But there were plenty of nights along the way…and still every now and then, where getting a solid night’s rest is nearly impossible. Even when babies sleep, for mom and dad you’re practically sleeping with one eye open waiting for a sound or movement from your little one. I ran into the same issue while working as a morning news anchor for seven years. A 2 a.m. alarm clock for work is difficult to deal with…without caffeine.

For most—coffee is a must. Fire up the bottle warmer and the Keurig. Am I right? For me, it’s a game of Russian roulette. Do I want to risk the chance of feeling awake, but also feel stomach pains and the need to run to the bathroom? Some days, I feel like more of a “rebel” then others…and it feels like the only option if I’m going to be functional for myself and my son while my husband is at work.

Other days I do my best to use a shower and sunshine to feel awake. It seems like an easy decision for all the non-Crohnies out there…I hear it all the time from family members and friends (especially the days I complain about being in pain!). “Stay away from coffee”… “I wouldn’t drink that if I were you”… “Did you drink coffee today?” I feel like I’m surrounded by the coffee police. It almost makes me want to drink it even more to try and prove all the naysayers wrong.

This morning I enjoyed a nice mug of coffee. Of course, the minute I put the K-cup in Reid started crying. So, I grabbed my cup of joe and sat with my foot rocking his Rock N’Play while I soaked up the liquid energy. He quickly dosed off into his angelic little sleep state. A matter of minutes later I ran to the bathroom…of course, he starts screaming, again.

As I sat on the toilet with the door open, trying to calm him down and go as fast as I could…I felt guilty that I once again gave into the need for caffeine. I had been up since 4:30 a.m., it seemed like a necessity. But is it, really?

The jury is still out when it comes to the topic of Crohn’s Disease aimage1nd caffeine. In other words, there is not substantial research that shows the impact caffeine may have on individuals with inflammatory bowel disease. But, there’s common knowledge that caffeine has a laxative effect, so if diarrhea is already a problem, it could create even more of an issue. Caffeine is also highly acidic and acts as a diuretic, which can lead to dehydration. It’s also known to elevate stress hormones and divert blood from the stomach, which can worsen digestion.

While this seems like pretty solid evidence to stay away from caffeine,  it’s still tough to refrain because sometimes the 10 ounces makes no difference to how I feel at all. It’s either—phew, now I can conquer the world…or why did I do this to myself, again?

Relationships, Caretaker(s) and Crohn’s: A candid interview with my husband

Yesterday marked my one year wedding anniversary. In the days leading up to the special milestone, I got to thinking about how daunting it can be to have a chronic illness and wonder if you’ll ever be able to find someone who loves you, despite your health imperfections. Since I was diagnosed with Crohn’s at age 21 in 2005, I’ve experienced how the disease impacts the way relationships play out. It’s not always pretty, but it does provide extreme clarity about people’s character.

Through social media I’ve come across many people and articles that express concern about ever being able to find a lifelong partner and worry about whether having a child is ever a possibility.

Photo by J Elizabeth Photography

Engagement photos with my husband, three weeks post surgery. Laughing through the pain.

I’m here to tell you…you can have it all. Your disease does not need to limit you in this aspect of life. So, what does one look for when it comes to finding the perfect partner who also makes the perfect caretaker???

You need someone like my husband, Bobby. Prior to meeting me, Bobby did not know what Crohn’s was. When we went on our third date, I told him during lunch. It was my way of being transparent and laying it all out there. Was I nervous? Of course. Was it a relief to get it all out in the open? Absolutely. Has he been there for me every feel good and difficult day ever since? Yes.

Six months into our relationship I had a bowel obstruction that landed me in the hospital for five days. In the blink of an eye, I went from feeling fine to being rushed into the ER. Bobby quickly saw how debilitating, painful and scary Crohn’s can be. In that moment he went from being my long distance boyfriend to my lifelong rock.

The first time Bobby experienced a hospital stay with me was the toughest for him. hospital “I feel bad even saying anything is hard for me when I know your insides are twisting and torturing you,” he told me at the time. “But there is no better phrase than ‘it sucks’ to describe how I feel, knowing you’re going through hell and there’s nothing I can do.”

“I felt completely helpless,” he recounts. “I remember going to my car and just sitting there thinking about everything that had happened. My mind was going in a million different directions, and I was feeling every emotion. I was tired, anxious, and worried. Yet it wasn’t even 1 percent of how bad you were feeling. Part of me wanted to punch something out of pure frustration, while another part of me was ready to break down and just cry for a moment.” Fast forward more than three years later…I interviewed Bobby this week to get a better feel for what it’s like to be on the other side of things—as the constant caregiver.natbobbyblog

NH: What advice do you have for those whose significant other has chronic illness?  BH: I don’t look at you as having a severe chronic illness. I don’t let that be the thing I think about with you. I find I almost reject the idea of you being sick until we’re dealing with a flare up or rough patch. My advice would be to treat the other person like everyone else, don’t make them feel like they are any different because of the health issues they face. Be by their side and think of anything and everything you can to take their mind off the current situation. Every person is different—but, when you love someone you know what takes their mind off things and what they like best.

NH: What have you learned since we met in summer 2013?
BH: At that time I just knew the word Crohn’s… I had no clue what it entailed or meant. When you first said it, I wondered if it was contagious and how it impacted your life. It’s been nearly four years and I’ve witnessed how devastating it can be. It’s hard to see the person you care about in so much pain. I always try to be supportive, but also keep our life in perspective and recognize that there are many people all over the world going through a whole lot worse. We’re both still breathing, both still living. You may be in pain, but we’ll push through. To this day, I’m fearful of emergency situations and complications that may arise.

NH: When I was wheeled away to surgery for my bowel resection in 2015… what crossed your mind?
BH: I felt sad and fearful. I envisioned you being nervous and scared, it sucked watching you be wheeled away because I wanted to be there with you. After surgery…I was relieved the procedure was over, but was still concerned because I know with Crohn’s you’re never entirely out of the woods since there is no cure. When you’re in the hospital whether it’s for Crohn’s flare ups or when you were delivering Reid there is a certain vulnerability about you that makes me want to do all I can to take care of you…and it’s easy, because I hate seeing you like that and just want to help you get back to feeling 100 percent.

NH: How has living with and loving someone with chronic illness inspired you or changed your perspective?
BH: It’s a constant reminder that this isn’t going away…when I see you give yourself shots and how painful they are for you it’s a reminder that you go through a lot to keep everything at bay. It inspires me that despite what you go through with the disease that you have so much energy all the time and are such a ray of sunshine through it all.

NH: What advice do you have for those with chronic illness who are concerned about finding “the one?”
BH: Don’t let it limit you in anything that you do. Don’t feel like you need to share it until you are ready. I wouldn’t be fearful of it being a deal breaker. If the person is worth your time and is in it for the right reasons…and truly cares about you, it won’t matter. You are so much more than “Natalie with Crohn’s disease.” There’s no downside in sharing. There’s a good chance the person will feel closer to you for knowing that personal detail and they’ll probably be thankful you were willing to share. Try your best not to be wrapped up in worrying what people will think about having Crohn’s. Be with someone who makes you feel comfortable and at ease with what you are going through. When I knew I liked you, I wanted to be around you and taking care of you when you needed it was and is second nature to me. When you love someone and they are hurting…you
want to be the one who’s there for them.

NH: Aww thanks honey… any last thoughts?18-nole-1481
BH: Remember that every moment in life is fleeting and temporary. In the good times and bad… you get through it. Try your best not to worry about things you can’t control…stress is a trigger with Crohn’s. It’s easier said than done…but know you can’t control everything. Stay away from things like corn on the cob and coffee…if you know it’s going to cause issues. I don’t look at myself as being a special person, babe. Anyone you love…you do what it’s going to take to help them. We learn together through each situation, experience and setback.