Hello! I am Riker’s mother. He will be turning 1 year old on 11/04/2025. I know his beautiful face is covered, but it is only to protect his identity. I work full time as a social worker here in good ole Owensboro KY.

On 11/04/2024 my whole world came to be. He was beautiful and the most perfect little stink. He still is of course, but I remember looking at him and thinking “oh my god, I just had a baby and he’s not even ugly.” Keep in mind I was also coming off pain killers and whatever happens to your brain after you give birth. And in my book, he didn’t look like a little shriveled up raisin which was a win. Everything was perfect.

But then some issues arose.

He wasn’t eating or pooping and he was spitting up this mucus-ey greenish liquid. We had no idea what was wrong with our little bundle of joy.

Then on 11/05/2025 we got the news that our baby was being placed in the NICU. Of course, I was just healing from a C-section after a traumatic birth so my brain was a little everywhere. I was terrified. My whole family was terrified.

I remember thinking that if he doesn’t make it I have no clue how I’m going to. I walked to the NICU on shakey legs after coming down from the epidural (Which no one tells you makes you scratch at your face because of the intense itching causing you to create open wounds around your nose and mouth). To see my baby with a tube down his throat to suck out the excess fluid from his stomach. The baby I held shortly before with the darkest hair (now blonde btw, somehow) and the sweetest face. It was hard.

Then some more bad news. They were flying him to Louisville in a helicopter because they weren’t sure what was wrong with him or why he wasn’t pooping, of all things. Distraught, anxiety, grief, fear, and pain like we’ve never felt. So, they discharged me after loading him up on the helicopter. Of course, they did so only because if they didn’t I would have left anyways… but literally the day after they cut me open and rearranged my guts. Anyways, so there we were undertaking a 2 hour drive about midnight that evening to Louisville with no real plan on what we were gonna do after we got there.

We couldn’t sleep. I had to see him. So we made it and I walked from the parking garage to the security desk at Norton’s Children’s Hospital, got on an elevator, and walked to my son’s room to see him. All in a double hospital gown and house shoes btw. Probably blood on it from the goofball sized clots I was carrying apparently (which they don’t tell you that it looks like a murder took place even if you delivered through the sunroof…). Sorry, TMI?

Well, luckily I was with my mother and grandmother, who idk what we would have done without at that time, and they tried getting a room at a hotel. But that didn’t work out… 3 am mind you. But we found one. Knocked out then came back to his bedside the next morning.

Then even more bad news. On 11/06/2024 he underwent surgery because he had free air in his abdomen. His intestine burst from the built up pressure. And they only had 2 potential theories as to why this occurred. The surgery was brutal. Though my exhaustion got the best of me and I was able to sleep through most of it in the surgery waiting room. I do remember barely eating lunch with my husband. I remember telling him that I don’t think I can make it if my baby boy doesn’t get out of this surgery alive. And I remember not being able to feel anything other than sadness and fear and pain.

They gave him an ileostomy. I remember seeing him after the surgery and being told he won’t be able to eat. And at the time I remember thinking he was going to starve to death if he didn’t eat something. So for 2 weeks we went to the Ronald McDonald House in the evenings and stayed by his bedside everyday. We read him Goodnight Moon, Chicken Little, and a few other stories. And leaving your baby even if it is for your own good to get rest and be able to be there to make the tough decisions if need be. It was the most difficult part. I was also pumping every 3 hours, even if he couldn’t eat it at the time, so that when he could he would have some good stuff ready for him. Which in hindsight I was anemic, eating barely anything, and definitely not drinking enough water, so probably not the tastiest it could have been. But anyways.

On 11/09/2024 my husband was able to hold our son for the first time after his major surgery. We were so scared because of all the machines he was hooked up to. We also had never held a baby really fresh out the womb so we were extra scared we’d break him or something? I let him have this because I was terrified to. But on 11/10/2024 I held him myself. And the smile I felt as I brushed my lips against the top of his head and took in that fresh scent of my baby. My baby. Now, we still had no clue what was wrong with him. There were 3 possibilities. 1) cystic fibrosis and 2) a very rare condition called Hirshprungs disease. Google was not my friend at the time. We were hoping for the 3rd possibility of none of the above and he was just having issues with his turds because they were extra rough I guess. And it took a very long time to figure it out.

But eventually we got the news. Our son has Total Colonic Hirshprungs Disease. And here’s a free anatomy lessen for you. You intestines are lined with these things called ganglion cells which signals your brain to push poop through your intestines to your colon, then out the back door. Total Colonic means my son’s entire colon was absent of those cells. And the only was to test for it was a biopsy which they luckily did during the surgery.

So, my son had an ileostomy and a diagnosis that was a mouthful. And we were at a loss of what to do. The surgeon explained we would need to wait a year before they could do a procedure called a reversal where they took out the parts that didn’t work (I.e. his ENTIRE COLON) and hook the parts that did work back up to his rectum so he can poop out of his butt. So we didn’t know if this meant he would need to stay at the hospital the entire time till he could have it. It didn’t cross our minds that they would let him come home only because neither of us knew a lot at the time. Well, they trained us on how to change his bag. I did it for the 1st time in the hospital and… it didn’t last… but I tried.

Then on 11/19/2024 they let us leave with our new baby. A new baby who only peed in his diapers and pooped put a hole in his stomach. That evening we got home was crazy. We changed his bag and the new parent fear was… a moment… I remember thinking “they let us take a baby home and now we just have a baby… I need an adultier adult right now. I have no clue what we are doing…” And listen, I’ve changed diapers before and… this was sooooo much better. No stink, no diaper rash, no nothing. Except sometimes he woke up covered in poop and we’d have to clean him all up and his bedding and change the bag that filled up mostly with gas versus actually poop… but I would take that over a whole human turd any day hosetly. But, it was no easy feat.

Learning a whole new skill set in the span of a day and adapting to a screaming alarm clock that wakes you up every 3 hours on the dot is not for the faint of heart. But, my stink is the best thing that has ever happened to me. We follow-up with the specialist and his pediatrician every 3 months to monitor his growth and check on his progress. Now, this is our story. And it wasn’t easy. His reversal is coming up. They had moved it from his original 1 year or so to a year and a half. We are behind on finances because we used our credit cards like they were debit cards during that time. And SOMEONE (it was me…) ran up on a curb and blew a tire in the big city… Not naming names.. but… (again it was me).

Going back to work was brutal. After 3 months of no work and the emotional turmoil I felt and the postpartum stress/depression/whatever was going on. Dude… I am grateful I was able to take my time beyond a shadow of a doubt. But we all wouldn’t say no to some extra days/weeks/year/forever of no work if we could afford it. Now, my son is beautiful. He will be turning 1 soon and he loves playing with his daddy, napping with his mommy, and cottage cheese for some reason? And he growls when he’s frustrated and hyperventilates when he wants food… However, when he gets mad… oh lord… you best bet that bag is coming off and whatever is in it is going everywhere.

I work full time. My husband stays home with the baby because I don’t know of any (free (because… this economy be rough on a homie)) babysitters who also know how to change and care for any ostomy situations locally. Medical bills have piled up and we haven’t been able to pay them. I am trying to pay mine off from his birth but with $50 per month (which is really all I can afford atm). A little goes a long way. And anything extra we make will be going towards someone else’s medical bills or a fundraiser.

I would like to keep track of who all donates to send thank you cards as well. But also if we can’t find an address or know it, then we can send you something via Messenger or online to show our gratitude for your generosity.

Riker says he loves you all and to give him cottage cheese or the title to your car so he can play hot wheels in real life.