Tomorrow is a very special day for our family. The anniversary of our very best day, Dierks homecoming day. Two years ago we brought baby Dierks home from the hospital. Looking back, I remember being so happy, so relieved, and just ready to have all of us under one roof. There were still so many unknowns. Those first few weeks were filled with nurses visiting, therapy appointments, checking his blood sugar, checking his weight. We already felt so blessed that he had beaten the odds and wasn’t displaying any outward signs of a brain injury, but he was 3 months old, so we knew we had an unknown road with many milestones ahead that he may or may not hit.

Here we are, two years later, Dierks has “graduated” from Children’s Mercy. I hate to brush over the two years because of course it wasn’t always easy, but truly I never get tired of sharing our story and the miracle he is. Physical therapists told us there wasn’t any reason we should keep coming. Neuro doctors saying they didn’t need to see him anymore, even though they loved the “bright light” on their schedule when seeing his name. His care team at Children’s saying there is no reason to put him through an MRI to see how his brain looks today, no matter how curious we all may be. He is a growing, healthy boy, eating and running and sleeping and doing everything appropriate for a two year old. Including saying “No Momma!” and throwing food he doesn’t want on the floor and hitting his brothers when he wants what they have.

It is not lost on us that every day there are families that don’t have this happy ending. Just today, I can imagine there is a mom who just gave birth and is being told, her baby needs extra care and will be transferred to Children’s Mercy. There are families that have been there for months and are hoping to bring their child home for the holidays. It definitely brings perspective to the 2020 we’ve had. Days I’m at my wits end being at home with not much to do and nowhere to go, I remember the 88 days where all I prayed for was for the 8 of us to be home, together.

Tomorrow after school, we will be bringing gifts and toys and treats to the children and the nurses who care for them at Children’s Mercy. The kids loved picking out books and toys they’d want themselves, imagining the child their age who might receive them. It still feels like not enough, and we can never repay the outpouring of support we got during that time. I know I’ll spend the rest of my life trying.

Below are a few of my favorite photos and videos of our miracle boy, everybody’s baby, Dierksy. 💛

Hello and happy All Saints Day!

The kids are off school today and we are currently all packed in the car on a quick little jaunt to Chicago to visit friends. We’re about half way there and I’m already remembering why I wanted to take the train or fly. But here we are, chugging along, trying to demonstrate an “attitude of gratitude.” Wish us luck!

I’ll take this opportunity to update you and remind you we are approaching a very important day, Dierks 1st Homecoming day is next Saturday, November 9th! We have a special celebration in store, and I want to invite you to join us in something you can do wherever you may be that day.

We will be doing random acts of kindness in an effort to spread the joy of Dierks, and encourage you to do the same! We know how one small gesture can have a ripple effect through a house, a community, our world. It’s simple, but not necessarily easy. It’s cheap but creates a rich experience in our hearts. You can pick something (anything!) that you know will surprise and delight another human being. Here are some of the ideas we have….feel free to share any other ideas and we’ll try to incorporate them this year or in the future!

Rake leaves for a neighbor.

Bake goodies and drop off to neighbors or friends (or strangers).

Go through a drive thru and pay for the car (or more) behind you.

Call a relative or loved one far away and tell them you miss them.

Hand out bus fare at a busy stop.

Leave a prayer card with your favorite saint or prayer on someones windshield or mailbox.

Tape change to a parking meter.

Pick up litter.

Visit a nursing home.

Spoil a pregnant woman.

Go to the store and stock up for a local food pantry.

Make some goodie bags with snacks, water, gloves etc. for your car to pass out to the homeless.

We would love to see joy spark in our community, much like it did all around us when Dierks was born and during his 88 days in the NICU. If you participate you can do so privately or if you want to snap a picture, please send to us or tag #spreadingthejoyofdierks so we can see Gods work in action!

We are starting this new tradition and it’s my hope that my children will someday be passing this along to their own families, every Nov. 9th, a day of gratitude and spreading love and joy, perfect timing as we enter November and the holiday season. Mark your calendar and join us!

We will start the day on Saturday at 7am with a family rosary, and would love if you can join us at that time from wherever you are, or anytime that day you are able, to pray the Joyful Mysteries to Our Mother Mary in gratitude for Dierks and the miracle he displays for us all, everyday. We will then head off and spread our random acts of kindness!

We are also due for an update on our baby…Dierks is 14 months old and still amazes us. He is such a busy boy! I find myself simply laughing when I see him standing in front of a cabinet, throwing cups all over the kitchen. I can’t believe this is the baby with the scary MRI. It just doesn’t make sense! He has mastered the army crawl and is starting to walk, taking more and more steps, gaining his confidence. He is starting to say a few words, the most frequent and clear is “uh oh!” Usually after he throws his food or cup on the floor. Again, I just have to smile and thank God for spilled milk….And our dog Peanut in helping clean up the mess.

We had a follow up with the NICU team at Children’s Mercy on Monday. I should mention we haven’t used Dierks g-tube since right before his birthday in August, which means he eats and drinks everything by mouth. We love seeing him chow down and it’s our mission every day to find creative ways to add calories to everything he eats. CMH was happy with his weight gain so the doctor removed his g-tube! It was actually super simple, you just take it out by hand, put a bandage over the small hole in his stomach, and in a matter of days it had closed up. He’ll always have a scar on the left side of his tummy and under his hair on his scalp, the only two outward signs of what he’s been through.

It was a big milestone achieved in teaching him to eat and drink, with the help of his occupational therapist, pediatrician, and some super mom friends who have shared with me all the tricks.

Thank you for spreading the joy of Dierks! We are so blessed and still haven’t lost the loving feeling that our friends and family near and far have given us. While we know this isn’t the end of the road in our journey with Dierks and our other children, we are grateful for the last 14+ months and are looking forward to celebrating as we enter the month of Thanksgiving.

Today is a special anniversary, it’s the anniversary of hope and grace. Yesterday was the anniversary of the worst day of my life. And Tuesday was Dierks 1st birthday and Simons 6th birthday. It was a blissful, beautiful day. Such a blessing! Thank you St Padre Pio, thank you Mary, thank you Jesus!

Dierks first year has been the best of my life. There has never been a more loved baby I’m convinced. He has seen the ocean and mountains this year, and in a way, I have for the first time as well. Senses are heightened, blessings are counted.

I mentioned in my last post that I have a baby journal for each of my kids, where I read to them their birth story on their birthday. I read Simons to him on Tuesday, and realized that not only do I not have a physical journal for Dierks, I have never documented his birth story to read to him someday. I’m sure he’ll hear ALL about it plenty, but still. It’s tradition!

This blog has in large part served as Dierks’ journal, so might as well document his birth story here as well.

I should also tell you, Chris created this website a year ago, a few days after we arrived at Childrens Mercy. We discussed doing a caring bridge site or something to communicate with everyone who cared about us and Dierks, people wanted to help and to know what was happening. I however, was reluctant. I told Chris it was risky, if we start a site, it means there is a future, there needed to be updates and developments to share. Would there be? Or was this all ending at any moment? I was so scared that we were going to lose this baby and I wasn’t ready to create a website in his name that may never be used.

But he did it anyways, and here we are, one year later. This blog was a great communicator, and therapeutic for me. Thank you for reading it and supporting us.

Dierks’ birth story

I was thirty-five weeks and four days pregnant with you. We were at Simon’s fifth birthday party at Nick and Joni’s pool. You were my sixth pregnancy, so I was experiencing Braxton Hicks contractions a lot, but they were starting to feel more intense. My blood pressure had also been somewhat high in recent weeks, enough I had been monitored after an appointment earlier that week after a standard visit. My doctor had also checked to see the position you were in just the day before, we were all disappointed to learn you were still head up, or breach.  I was 35 weeks, so you still had time to flip, so we thought.

As the birthday party ended I started to feel strange and I had a headache, so I decided we should stop by Walgreens on the way home to get my blood pressure checked. It was high. Wish I could remember the number but it wasn’t too high to be an emergency, but the nurse said I should come in to be watched and make sure you were handling my contractions ok.

All your siblings were born a couple days late, so I never considered you arriving this early. But as your Dad and I got in the car to go to the hospital, bags in tow, I knew that another spike in blood pressure would mean they were probably going to want to deliver. “Simon may have to share his birthday”, I remember saying.

At this point, I started to get excited to meet you, and I never worried about a problem.  In retrospect, there were other discrepancies between this pregnancy and others. I had extremely swollen feet, all the time. I also felt you kick a lot from 18-28 weeks and can pretty much pinpoint when I started to swell and not feel you kick as much. I even told my doctor, but we assumed it was the placenta cushioning your kicks and the swollen feet were blamed on summer weather and me being on my feet constantly. I never worried there was a problem.

Once at the hospital, I was hooked up to the monitors, the doctors could see that your heart rate was a steady line, without variance, which seemed a little concerning to them. When I contracted, your heart rate decelerated, which they really didn’t like. This had been the case with Mac, and I delivered him quickly with no issue, so I never worried there was a problem.

We had already planned on doing external cephalic version (EVC) the following week to force you head down, which I did with Ralphie at 36 weeks. I really thought you just hadn’t flipped yet like the other kids who were late flippers. The specialist came in and broke the news to me that the baby did not seem to be handling things well as it was, and she did not want to proceed with the risks of forcing the baby head down. She recommended a c-section. I was devastated. I don’t need to go into the pity party I had for myself for the next hour or so, but you can understand my disappointment after 5 natural births. Ultimately, I trusted my doctor. She even made a light hearted joke that now I can officially say I’ve done it all when it comes to child bearing. It surprised me though when she said she wanted to deliver right away. What’s the rush? Could we wait a few hours to give the baby its own birthday? She said she doesn’t like what she is seeing on the monitor. She used the analogy of us being in a canoe, and the waters are starting to move fast and we’re entering the rapids. She said the waterfall is up ahead and while we could try and paddle our way backwards, she wanted us out of the river safely. I trusted her. Even after this conversation, I never thought there was a problem.

They dressed your Dad up in scrubs and wheeled me into the OR. In the waiting room was all our family, including your siblings. Everything went smoothly with the c-section, they pulled you out, your Dad exclaimed “it’s a boy!” William Dierks Underwood. I was surprised! I really thought you were a girl and that’s why my pregnancy was so different. After you were born at 7:09pm—the nurse brought you over to me. You were beautiful, lots of blonde hair! You had unusual bruising, and the nursing staff asked if any of our other children had the same markings at birth. I said no. They said they had to take you to the NICU, it was standard for pre-term babies. I was disappointed to not have you in my arms doing skin to skin, but I never worried there was a problem.

Your Dad went to the waiting room to share the news with our waiting family. Everyone cheered and the kids were so happy, even Betsy. 😉

This time though, it was different, awkward feeling. Everyone came back to see me and give hugs, but you weren’t there to cry tears of joy over. I remember many times asking the nurses when can you bring him back? What is the standard protocol for the obligatory NICU visit?

I don’t really remember the time in the hospital after all our family left, it’s very blurry.

I do know the medical team took you to the NICU to investigate the bruising, where initial bloodwork revealed that your blood platelets were low. They mentioned to us when we visited you in the NICU later that night that they were going to do a CT scan. They were calm, so I was calm.

On the afternoon of August 14th, your dad and I were in my Saint Luke’s hospital room, still waiting for you. Instead, the NICU doctor knocked on the door and said she had the results of the scan. Unfortunately, it showed that our son had a very serious brain bleed. He would need to be transferred to Children’s Mercy, where he would have access to a number of specialists. Your dad and I looked at each other, in shock. It was one of those moments that felt like a nightmare and I was hoping I’d wake up soon. There was no question now, there was a problem with our precious newborn.

We asked to see you. She said yes but they were already getting you ready to go so we could go now before you leave via ambulance. No, we could not ride with you.

Your dad wheeled me down the hall in a wheelchair to the NICU, I don’t think we spoke. He called my mom (Mimi) and just said, “Come now.”

We held you, we talked to you, we cried over you. Mimi was there hugging me from behind, my good friend and your pediatrician Kelsey showed up at this time as well.

I was upset we couldn’t ride in the ambulance but didn’t even consider not going to Children’s Mercy with you. My doctor knew me well enough to know I was going where my baby was. She and my nurse essentially let me sneak out of the hospital. I learned later all the risks and complications this caused, and that often times doctors do not let the mom leave to accompany their sick baby to CMH. This is something you’ll hear more about from me someday. There is no reason that should happen to any mother when CMH is full of amazing doctors and nurses who can also monitor a post delivery mother.

So, me and your dad drove our car to the hospital. I learned my dad (Baba) had already beat us there and was waiting. It was warm and raining that day. I didn’t know at the time but this would be the last time I was outside for 10+ days.

We were checked in and watched a video for orientation. We immediately felt a sense of relief upon arrival. We knew we were surrounded by experts and at the best possible place for you.  There was a lot of waiting that first night, the rest of the family was trickling in to see you and give us support.  My cousin Caitlin, a NICU nurse there, wasn’t working, but called in to make sure we got the best nurse on the floor that night, our special Irma.

Doctors wanted to do a detailed MRI, so we all waited. Friends were outside saying the rosary.  But the test results were grim. The MRI showed the entire right side of your brain had shifted over to make room for the blood. Instead of seeing a symmetrical brain with two sides, it was smushed together on one side. It was a Grade 4 Bleed (scale is 1-4) with blood in multiple parts of the brain, something the doctors remarked they’d never seen. Plus, you were sick. Labored breathing, low blood sugars, high bilirubin, and platelets were extremely low. We wanted there to be surgery, a solution, let’s fix this, let’s save you. The doctors said no, he’s too sick, we need to watch him and wait. They started anti-seizure meds to be safe. They started a number of tests to try and figure out what had caused this to happen. Father Greg came to the hospital and you were baptized with Medjugorje holy water I happened to have in my purse.

This was the worst day ever. We slept a couple hours in an unused patient room, me on a chair due to the c-section surgery. I didn’t care about myself, I didn’t feel pain in my abdomen, it was all in my heart.

The next day is when I will take you to my blog entry on 12.13.18 called Our Miracle Baby, the worst night ever and the day after. It was August 15th, the day when we woke up crying and mourning, but ended the day with rosaries, a rainbow, hope for a miracle, and an overall peaceful feeling. This is what people’s prayers for you did. This, was grace.

To summarize, (for longer details you can always re-read the blog) they did an MRI every few days to watch for hydrocephalus and ensure the bleeding had stopped. They did testing for blood disorders, viruses, genetics, anything and everything to try and treat you and learn what may have caused this. No answers, but you did start to get better. You hated when they took your temperature. Your eyes dilated, you responded to touch and sound and light. After you had multiple blood transfusions, no sign of seizures, no new bleeding, and vitals were better, they decided we could/should do surgery. So on August 29, the neurosurgeon and his team did a washout, or a dime size incision to remove the blood. What a relief that day was.

The surgeon remarked that the blood in your brain had clotted and he could tell it had been there for awhile, indicating the bleed happened sometime in utero, not during childbirth which is more common. If we had tried to flip you as planned, or perhaps a natural childbirth at all, you likely wouldn’t have survived. You were breach, delivered via c-section, and an early arrival, so you’d live. All of this was part of Gods plan. The blood pressure was just the signal to me and my doctor, to get you out safely. I’m so grateful it happened exactly the way it did.

Your birth story is a big part of the miracle that transpired your first year of life. Thank you for teaching me so much in such a short time. Thank you for strengthening my faith and our family. I am so honored God chose me to be your mom. I love you so much my wonder child, everybody’s baby, my Dierksy boy.

We have had a wonderful, busy summer. Taking in all we can of lake time, pools, friends and family. Yesterday we celebrated Ralphies 4th birthday. My baby #5. We have the largest gap of any of the kids between Ralphie and Dierks (almost three years). So in many ways Ralphie feels like my forever baby.

It’s tradition for me to read from the kids baby journal, another tradition my mom started. I go to the first entry which is always their birth story. There are details even I forget and we all love reliving the day of their birth day.

One reason why I kept having babies, is because I LOVE having babies. We never found out the gender ahead of time, and there is nothing better than that surprise. I love the first hours and days in the hospital. Falling in love quick with a new baby, their sweet smell. I always had fairly typical pregnancies, which I won’t call easy because let’s be honest it’s not. But in the end, absolutely worth it. I used to tell my friends I couldn’t visit them at St.Lukes after they had a baby because then I’d end up pregnant. That place had nothing but good memories for me.

So Ralphies birth story made me a little sad yesterday. It reminded me that in a way, he was my last non-dramatic, typical birth story. I was so excited to do all of it again with baby #6. Well as we all know now, there was another plan.

I will say as I have before, I still wouldn’t change a thing of how it all transpired. But there is still a part of me that feels robbed of those precious newborn moments. Skin to skin, counting fingers and toes with his older siblings, nursing him round the clock, introducing him to the world with “Its a boy!” And all the stats that come with an announcement. I still have to remind myself when I see other babies announced that I got to do that FIVE TIMES and stop feeling sorry for myself because I didn’t get that this last time. And yes for anyone wondering, it was the last time.

One last story I’ll share about my Ralphie is one from the first time I came home from the hospital. I came home escorted by my Chicago friends Melek and Mark who surprised us. Anyways, after they left I was having dinner with the family, feeling pretty foggy as you can imagine as I hadn’t stepped foot in my house for 11 days. Ralphie asked me if I was there to babysit. That one stung. Later, we were eating dinner and Ralphie was playing basketball on his little hoop in the dining room. I was watching him, his strong legs, his perfect skin and hair and chubbiness. I don’t know how to explain it but I couldn’t contain my emotions in that moment. Overwhelmed with gratitude for this perfect son I had, yet grieving for my sick baby back at the hospital. Would he ever run and play and shoot a basketball too? I gained such immense gratitude for my healthy children in those days. THEY are all miracles too. There were unfortunately/fortunately many moments like this those first few weeks in the hospital. I was desperate to come home and see my kids but when I did, I found myself getting more upset and breaking down. Many times I would lay with ralphie when he was going to bed, and I remember trying to hold in my tears til he fell asleep, then would cry and watch his perfect face as he slept.

So enough of reliving the past, I’m a crying mess at the moment so let’s move on to the GOOD NEWS.

Dierks, is amazing! He was slightly behind on milestones by a couple months due to his 88 day NICU stay, but today, he has caught up. He is crawling, pulling up and cruising around. We officially have baby gates up and no small choking hazards on the floor. (Not an easy task, thanks Legos) I cant tell you the joy I had when I went into his room to get him from a nap, and he was standing! We had weekly therapy for awhile and they asked us a couple months ago if we even want to keep doing sessions. Can you believe this?! But yes, we have moved to every other week OT because I want another set of eyes on this baby to make sure we give him everything he needs to develop and continue to thrive.

Dierks was able to nurse, but has never really taken more than an ounce or two from a bottle. So for now, we are still giving him his milk via his button or g-tube. Our hope is that shortly after he turns 1 he’ll be able to stop using it since he is eating great by mouth.

Speaking of, he turns 1 in a couple weeks on August 13th! Same day as Simon turns 6. It is so hard to believe. I have all sorts of mixed emotions that I’ll try to share on a future post. This one was for Ralphie. 😉

Happy Easter everyone!

I have included some family pictures my sister took for us recently. Dierks continues to thrive and is such a happy baby. At our last appointment at Children’s, the neurologist said “Well, I can’t find anything wrong with this kid, once he turns 1 we can determine if it it makes sense for him to be seen anymore.” Amazing!! We continue to have weekly visits with an OT to watch his vision and teach him to eat by mouth. He’s turned a corner the last couple of days and is eating like a champ!

Yesterday was a very special day for many reasons. It was an especially beautiful sunny day, Dierks first Easter, and my 38th birthday.

Milestones and birthdays were extra hard when Dierks was in the hospital, and now they’ve turned into extra blissful days. I had a few moments yesterday where I wondered to myself, what I’d be doing, how I’d be doing, if it had turned out differently with Dierks. Would I be here? (Mass, brunch, family gathering?) Or would I be hiding out at home, even with a beautiful day and 5 healthy kids to mother. I don’t know that answer. I picked up the kids chocolate bunnies to go in their Easter baskets. Laura Littles personalized bunnies they look forward to every year. My heart swells when our traditions unfold with Dierks included.

I had an aha moment this Holy Week leading up to Easter. I’m a cradle Catholic and have been celebrating Easter my whole life. Its a bit embarrassing to even admit this as I was fortunate to have a religious education- grade school, high school and college. But I hadn’t ever experienced tremendous pain or loss in my life until this past year. I have always celebrated Easter and viewed it as a celebration of the miracle of Christ rising from the dead. Which is worth celebrating don’t get me wrong, I just didn’t necessarily apply it to my life and let it sink in what that truly means.

I remember a moment after learning Dierks had a brain bleed and was being rushed to Children’s, I was with my mom and cried to her, “I can’t do this!” A moment later saying, “Well I CAN do this but I don’t WANT to do this.”

There is tragedy all around. Cancer diagnosis, addiction, infertility, young people dying by suicide and car accidents. Horrible, hard stuff.

But now, I think about Jesus’ death and the pain and suffering it caused to all those around him, especially His Mother Mary. He could’ve escaped the pain, asked God to save him. But no, He died, and the world around Him mourned and felt that tremendous sorrow and pain. I can imagine now the hopelessness they must’ve felt. Where do we go from here? How do we live through this? Will the world ever be good again?

Then came the rising…the redemption. Jesus showed us that in order to rise, a part of you may have to die, feel pain, hurt. Jesus shows us we CAN rise from it. For most of us it may not be on the 3rd day. But He made us resilient people, capable of surviving what the world will inevitably give us. Time, faith, mercy, love…all of it will heal us.

The bliss I feel daily to have this baby with us and doing so phenomenal, would not be felt if I hadn’t traveled to the depths of despair first. Gosh I don’t want to relive those days but I’m really fortunate and glad that I lived them. I tell people a lot that I wouldn’t go back and change a thing even if I could, I know that seems odd. I just know that this experience was a gift to my faith, my family, my community, my everything, so we could experience the rising.

I will never forget this very special Easter and birthday, I don’t think it’s a coincidence that it is the first year it has fallen on the same day. I was given a cross to bear in the fall of 2018, and what a gift it is to be thankful for it this Easter.

Love,

Jessie

I can hardly believe our baby boy is 6 months old! It has been a huge range of emotions the last half year but overall, we are still in awe of the miracle he is. Today I took him for a functional evaluation at CCVI. It’s another amazing place we’re lucky to have in KC, but also a place that immediately makes you count your blessings and remind us how far we’ve come. There was a concern with Dierks vision early on, due to the area of his brain that was damaged being responsible for left sided vision. Well so far, the experts and therapists say he is doing great and there are no noticeable shortcomings. We continue to work with OT and CCVI therapy weekly.

Dierks has started solid foods, is teething, rolling over and learning to sit. All normal baby things! He sleeps through the night, and has for awhile, which is not typical but very much appreciated! 😉 Dierks even got to go on his first plane ride last weekend to Chicago to visit friends, including a fellow baby warrior, Rory Hermes, who is battling Leukemia. Please add him and his family to your prayers. Dierks was a champ as usual, he’s such a laid back and happy baby.

We had a wonderful blessing and baptism #2 a few weeks ago. It was such a surreal day with so many friends and family at St.E’s with us, celebrating Everybody’s miracle baby. Chris said a few words and wowed me with his composure and ability to thank everyone for lifting us up when we were in need. He didn’t leave a dry eye in the church. I sure wish I had thought to take a video!

Thank you for the continued love and prayers for Dierks and our family. A video and recent pictures below.

xoxo

Dierks Godparents: Caitlin O’Rourke Wood and Tighe Greenhalgh

If you are a Kansas City Chiefs fan, I’m guessing you need some baby belly laughs today. Best sound in the world!

Happy 2019! We had a wonderful Christmas and New Years here in the Underwood house. I’m still living in the blissful euphoria of having Dierks home and how wonderful he is doing. He is growing, doing beautiful baby coos, and starting to roll. He has a strong neck and doing better and better with tummy time. We continue to have visits with an Occupational Therapist weekly to watch him and learn ways we can help him continue to thrive. Feeding is good, he nurses really well, so we are able to skip the g tube a few feedings a day. He still doesn’t have interest in the bottle, but I know many moms have this challenge, NICU baby or not.

He is a very laid back and happy baby. Easy to smile and doesn’t cry much unless hungry or wanting to be held, which I’ll happily oblige! He has a lot of stimulation with big brothers and sister kissing, hugging and what some may call “smothering” him constantly. I try my best to not fight their desire to love on him.

He definitely looks like one of our kids. He looks like his siblings, but which one is constantly up for debate. The kids love to claim him. He is a lot of Ralphie, but awake I am seeing Topher as a baby and now Betsy just the last couple of days.

I have another special story to share, one that I was somewhat hesitant but I think it’s important to be reminded of not only this miracle baby, but the many signs that we are not alone in our challenges, if we can just be open to seeing them.

As you know, Dierks was born with a Grade 4 brain bleed. In our first weeks at Children’s Mercy, he had numerous MRI’s and ultrasounds to make sure the bleeding had stopped and to monitor any changes in his brain. At one point in that first week, we asked to see the recent scans, since we hadn’t seen images of his brain since “the worst night ever.”

Chris and I, Dierks care team consisting of Dr Nyp, (Neonatologist and our fan fave), Sarah his nurse practitioner, and other Neurology specialists and nurses were all in the room. Dr Nyp held up the image of his brain with all of us huddled around to see.

Immediately I saw it, a face. Looking back at me, on the right side of his brain, where I was supposed to be seeing an injury. I looked around at the others, all listening nodding along. I honestly have no idea what the doctor was saying, I was so distracted. I couldn’t NOT see this biblical looking person on the paper. Once the doctor stopped talking, I overcame my fear of being called crazy, and asked, “Does anyone else see the face?” I pointed it out and was met with “oh yes, wow I see it too.” A couple people bringing it close, needing further explanation but we all saw it.

I believe now it’s Mary’s face, looking back at me to tell me she was with us. She was there taking care of my baby. This was an early sign that everything would be okay. We immediately texted the image out to family and it started circulating throughout the staff in the NICU. I’ve included the image below. I realize it may not be as obvious to everyone and that’s okay. In those early scary days of August, it served as hope and a sign of Mary being with us when we needed her most.

I truly believe signs are all around us. Some call them coincidences, I prefer to call them God moments. This entire experience has heightened my awareness of the God moments that happen every day. I’m so thankful for going through the 2018 that I did. It took me down to the valley, through the most challenging experience of my life. But I’m okay, I survived it, and now I’m armed with faith and perspective and gratitude. I’m ready for 2019 and all the ups and downs it will bring.

On Sunday January 27th we will have a special blessing during 10:00 mass at St. Elizabeth. Dierks was baptized on August 14th, 2018, on “the worst night ever.” Our pastor, Father Greg Haskamp, rushed to Children’s Mercy after our call, and baptized our sick baby boy with only Chris and I crying over him. Although he’s already been baptized, we felt it’s still important for him to do the tradition of introducing him to the parish and celebrating him being blessed with the Catholic faith. After mass, we’ll host a gathering in Seton Hall under the church. If you are in KC and would like to join us at our home parish, all are welcome! We look forward to celebrating Dierks, and the many wonderful blessings he has already brought to this world.

Wishing you an abundance of love, blessings, and God moments in 2019!

Love, Jessie

Hello there,

It’s been awhile since I have written. On one hand I’ve been so busy getting ready for Christmas, follow up visits and taking care of the house and kids I haven’t had time. But also we are all doing really well and not much new to update. Dierks is growing and doing great, he is 12 pounds. He is nursing well a couple times a day, the rest of his feeding is by g-tube. The little fella just has no interest in a bottle. We will continue to try, but I’ve accepted the fact we may have to use the g tube til he’s one and eating all by mouth, and that’s okay.

I still feel a huge relief, especially on the weekends when everyone is home from work and school and I don’t have to leave them all to go to the hospital. It feels so good to be making breakfast on Sunday mornings, sipping coffee, willing ourselves to start the process of getting 8 people dressed and out the door by a certain time for mass. I love watching the Chiefs together cheering at the TV, as opposed to my lonely iPad in the hospital room.

We have a lot to be thankful for and it still sometimes feels like it was all a bad dream. The therapists and follow up visits are full of hope and happiness that Dierks is doing so well. In the hospital and early days at home, he wasn’t tracking well and we thought we may have some vision issues. He has improved so much to where we don’t notice any problems at all. The occupational therapist that visits weekly can’t believe his progress every week. In her words, he is thriving at home.

I thought I’d share some stories from the first days we were at Children’s Mercy. We refer to these days as “the worst night of our lives” (Tuesday the 14th) and “the day after”. The day after was the morning we woke up after sleeping in a Ronald McDonald room at the hospital, the night Dierks was admitted. I had a csection the day before so was still being pushed in a wheel chair. I woke up that morning hoping it all had been a nightmare. It wasn’t. I started thinking about what songs I would choose for a funeral. I was planning on having him wear the take home outfit that all my kids wore when they went home after they were born. Although I was assuming he’d wear it for the last time. A lot of details around these days are probably too personal and really sad but I was in the depths of despair thinking that this would be the day our precious boy would pass. Should we have the kids come up and meet him? Is that too painful? Yes, they need to meet him. He’s their baby brother, they need to meet him. We felt like we urgently needed to have my parents bring them up, we didn’t know how much time we had.

It’s all a little blurry but we had a lot of family at the hospital. I remember constant hugs over my shoulders as I stared at my baby in shock. He was moving and responsive to touch and sound, how can this be happening? My Godfather Brian who lost his own newborn boy was there to comfort me. My uncle Nick who lost his newborn baby girl visited. My cousins Tighe and Erin who miscarried a baby just weeks before visited. Many special people coming in and out to show us their love and meet and say good bye to our baby. Two very special people, my Nana and Papa also came to see us. My Nana hugged me and we cried together a long time. She whispered prayers and messages of love to me, gave me her rosary. Papa was there too, standing over Dierks, very calm and stoic. He’s seen a lot over the years so his lack of emotion didn’t really surprise me. When they were ready to leave, he hugged me and said, “Jessica, I believe in miracles.” I looked at him and it felt like a lightning bolt. Yes, that’s it. A miracle! I’m not sure why it hadn’t occurred to me that maybe we could see a miracle happen? Perhaps because doctors don’t talk about miracles. They look at an MRI and tell you what they see. It was scary to have hope, but for the first time, I did.

I think it’s important to remind you that Dierks had already been the named after this wise man, William Dierks Hodes.

From then on, that’s what we said, pray for a miracle, we need a miracle.

The kids did come to visit. The details of which are painful to relive. Their sweet scared faces, unsure of whether to be excited and happy about a new brother, or scared and confused as to what was happening. There was an amazing Child life Specialist there, helping us talk to them and read a book to prepare them to see a sick baby. They kept asking “when will he come home?” At this point we didn’t think he would be, but all I could say is “I don’t know.” To Betsy, Topher and Mac, who would not let up on questions and trying to understand what was going on, we explained that his brain was not formed correctly and if we bring him home, he would have a disability. I will never forget my 8 year old Topher’s response in between tears, “But Mom that’s okay, he’s our brother, we’ll take care of him.”

My heart broke in this moment, that’s all I wanted too. Just to take this baby home someday, in any condition, we’d be okay. But losing this baby, what it would do to all of us, I didn’t want it to be true. I wanted to give him the gift of a baby that we could love and take care of, no matter what special needs he might have. I give so much credit to our school, St. Elizabeth, for Topher’s profound response. They teach our kids inclusion for all differences and disabilities, it’s pretty amazing.

Later that day, I had to go back to St.Lukes to get checked by my doctor. My friend helped me shower while I cried to her. My doctor came in and we talked about Dierks, how surprised we both were to be in this situation. She helped me through my five other pregnancies, all with happy endings, we didn’t know how we got here. She asked me if I had pumped lately, I said no. I didn’t think there was a point. She said, “I understand but it may give you options later, that’s all I want for you is options.” A little later, Chris got in the shower and I decided to pump. When he got out and saw me, he broke down. It was hope, I was showing him that I had hope that our baby would eventually drink this milk. It made me love him even deeper to see him so vulnerable and impacted by it.

As I sat in the St.Lukes hospital bed visiting with my family and friends, it was brought to my attention that my good friends had organized a rosary at St.E’s for that evening. I was touched by such a gesture. The rosary was at 5:00 and soon after, I received many texts of pictures of a rainbow that was over the church as people walked out. I can’t explain it but anything as another miracle. From that point on, I was calm. Yes I was still scared but no more hysterical crying, I felt okay. I know now, this is Grace. I believe the rosary that night was the catalyst that changed the trajectory of not only Dierks health, but my ability to handle it. I can’t explain how I got through those days and weeks after, but I know that you all were not only praying for Dierks, but for us his parents as well. Your prayers and my faith saved my heart from breaking that day.

You know a lot of the ups and downs that came the three months after these days. But gradually, he got better. The doctor who had him on the worst night ever, told us she had to double check the name on her chart that first night because the baby in front of her did not match the diagnosis. Dierks would jerk when lights turned on. He had all his reflexes. He cried when they checked his temperature and drew blood. While it was torture to see him get poked and be uncomfortable, the doctors and nurses reminded us “this is good!” His brain is working and communicating. So the hope and faith in a miracle happening grew and grew from there.

There are many more stories of inspiration and God moments (what some may call a coincidences) that we experienced. I am trying to muster the courage and strength to relive some of them and share them. Over time it will get easier, but for now will leave you with the these.

I am over the moon in love with this baby boy, it hurts my heart to imagine any outcome other than what we have now. I’m not sure I’ll ever forget the desperation I felt on “the worst night ever and the day after”, but that’s okay. It humbles me and now fuels my love for Dierks, my other children, and my husband.

He is everybody’s baby, you all stormed the heavens in prayer with us and we asked for Gods mercy, and we got it. With the help of the miracle workers at Children’s Mercy, God sent our baby boy home for Christmas, and he is thriving.

With love,

Jessie

My sister Emily Severino, a talented photographer, captured some great pictures of our beautiful boy.

“Jessie can I pick up your kids from school today?”

“Jessie the meal train filled up in minutes so we’re going to extend it”

“Jessie I spent time in the NICU with my baby too, you’re not alone.”

“Jessie we lit a candle for Dierks in Rome this morning.”

“Jessie I dropped off some chocolate treats for Dierks nurses and doctors at the hospital.”

“We canceled the school function, we didn’t feel like the right time to have a party.”

“Jessie, we are having a rosary for Dierks tomorrow night.”

“Jessie, I am on my way to the hospital, what can I bring you?”

“Jessie I am going to Target, what can I pick up?”

“We only have a few hours here but drove through the night to give you a hug.”

“Jessie I hired a cleaning lady for you, just call this number when ready and she’ll be there.”

“Jessie I just picked up some leggings for you that I loved after my c-section, they’re on your front porch.”

“Where can I get some Dierks wristbands?”

“Jessie I saw this and thought of Dierks.”

“Jessie/Chris, don’t worry about work right now, we got this.”

“Jessie/Chris I know we haven’t seen each other in years, but you are in my thoughts and prayers.”

“Our family is praying for Dierks every night.”

“Jessie/Chris, I believe in miracles too”

There is more, but you get it! The countless ways you have shown up for us the last few months has shocked and overwhelmed us.

I have been sitting in gratitude unsure of what to do about it, it’s SO MUCH. I was talking the other day about needing to write thank you notes, when my sister in law literally yelled at me and forced me to give that up. So if you are reading this, chances are you are owed a thank you note. I hope this will suffice. The meals, lunches, rides, prayers, unexpected gifts, groceries on our doorstep, lunches at the hospital, care packages for the kids, gift cards, free babysitting, all of it, thank you from the bottom of our hearts.

While not everyone will have a sick baby, we know that life is tough and full of unexpected struggles that we will all face. My hope is that you are comforted and supported by a community as we have been. I am so grateful that Chris and I have invested our time and hearts into places and people that have lifted us up during this time. Even when it’s been hard or inconvenient or made us busier than we want to be, making time to be involved and present has come back to us ten fold.

We’ve been home almost two weeks and it is still a relief waking up with all of us at home together. I was always so anxious to get Dierks home, I don’t think I realized that part of me was never convinced that the day would ever really come. It still feels like a dream sometimes.

Dierks is doing wonderful. Getting bigger everyday, smiling, taking in all the smells and scenes and (loud) noises that make up our home. He is still learning to eat by mouth, we are taking it slow and steady for him which fortunately the G tube allows. You would never know by looking at him what this perfect baby has been through. Multiple surgeries, intubation, scans, MRI’s, ultrasounds, countless IV’s, shots, pricks. I can’t wait to tell him what a warrior he is.

We can’t help but carry a heaviness for the families we know are in Children’s hospitals today, join us in a special intention for them on this holiday.

This thanksgiving I feel that my heart might burst with gratitude for our miracle baby. We are thanking God for the gift of this struggle and our newfound perspective that has resulted. Our house is messy and loud and busy, but it feels warm and full and joyful.

Happy Thanksgiving to you all, we hope you make it the best one yet!

Love,

The Underwood’s

Chris, Jessie, Betsy, Topher, Mac, Simon, Ralphie, Dierks (and Peanut)