Rowan's Journey

After staying with us for 117 nights in 2019, Rowan's family took him HOME. He will need a kidney transplant soon, but the search for a donor is over: his dad is a match! Help us wish him well!

We had a long few days of appointments for Rowan! Wednesday, Rowan had a 2.5 hour ultrasound that is required for transplant eval and it wasn’t fun for any of us. It was long, we were all tired from our drive to Cincinnati, and trying to keep an 18 month old happy and sitting still for that long is not easy. After that, we met with Rowan’s surgeon (who will be doing his kidney transplant) and talked to him about transplant info and plans.
On Thursday, we had to be at Cincinnati Children’s bright and early at 8:30am to meet with a nephrologist (not Rowan’s main nephrologist) and talked to him about transplant and got some more info from him. We then met with an infectious disease doctor, psychologist, living donor coordinator, social worker, and pharmacist (all separate appointments that took 1-1.5 hours each). A lot of the info was about things we will need to know in the future once Rowan gets his transplant so it just felt like information overload. Now I know why I had so much anxiety leaving the NICU to go home for the first time 🤦🏼‍♀️
On Friday we had to get bloodwork done and had his dialysis appointment where we heard more transplant info from Rowan nephrologist and renal dietician. Afterward, me, justin, and Rowan all got our flu shots! 🙌🏼
Anyway, the big things that we learned this week were once Rowan is officially approved for transplant (which should happen in the next couple of weeks) we will be able to start living donor workups to see if we can find a match for Rowan. Justin and I are both going to get tested to see if either of us can donate! The team is still finalizing a plan for after transplant, but from our understanding we will need to live within an hour of Cincinnati Children’s for around 6 months after transplant because of all of the follow up appointments and bloodwork Rowan will need.
We have a lot of urology work to do with Rowan’s bladder before a transplant, so they’re estimating a transplant can probably happen next spring or summer IF everything with urology goes well AND we find a living donor. Otherwise, Rowan will be placed on the deceased donor list. As always, thank you for the prayers and checking in on us 🖤

I just wanted to say THANK YOU so much again for all of your support, donations, and prayers. We are so so grateful.

Rowan is doing great! He recently was able to remove his oxygen during the day while he's awake, which was huge for us!

And the best news, Rowan’s paperwork has been sent to be evaluated for transplant!!!! The team said we aren’t in any hurry since Rowan’s stable and doing really well with dialysis, but we’re ready to get the process started! Rowan will have a couple of procedures and ultrasounds done at the beginning of October to see how we need to prepare his bladder and ureters for a kidney transplant. After that, as long as his transplant referral is approved, Rowan will continue with transplant testing and we will be meeting with all of the different transplant teams. We will also learn how we can start to get tested to see if me or Justin are a donor match for Rowan!

We will know more info in the coming months, but send prayers that everything continues to move smoothly and Rowan stays healthy and growing. Ideally, the transplant would be sometime next spring, but that’s only if everything goes well and we have a live donor match 🤞🏼

Rowan's story was shared on Ronald McDonald House Cincinnati's website again!

Rowan has come so far! His journey is inspiring. http://www.rmhcincinnati.org/rowan/

The latest update on Rowan! 🖤

Sorry I haven't posted updates on this page in a while! It's hard to keep track of all of my pages 😂

"The medical mom sees things a bit differently. They get to believe in magic, in miracles, and in prayer because they have given birth to the proof it’s real. She has watched her child break every rule and negative expectation. Her baby is heaven-made."

I relate to this article so much as a medical mama to my Rowan! 🖤

What It’s Like To Be A ‘Medical Mama’ She is a medical mama, and she’s proud of that fact, but no one will ever understand it unless they’ve lived it.

✨ Post your first born. The one who made you a Mom! ✨

Water broke?- Yes
Knew the gender? - Yes
My age then? - 28
Due Date? - 6/17/19
Birth Date? - 4/26/19
Morning Sickness? - nighttime nausea
Cravings? - jimmy johns sandwich
Hospital? - first Toledo, then UC
Nickname? - Row, Rowy, Bubba, little buddy, peanut
Age now? - 11 months!
My age now? - 29

Post a picture of your first born. 💙

We were asked to nominate Rowan for a superhero cape from TinySuperheroes! TinySuperheros is a tiny cape company with a BIG mission to empower extraordinary kids as they overcome illness or disability.

Rowan is on the waiting list for a cape now, but if we raise $30 or more, he can get his cape sooner and also help other kids get their capes, too! This is just for fun and will be something for Rowan to have to remember how brave he is! If you'd like to help Rowan get his superhero cape, click the link below! Otherwise, be on the lookout for pics of Super Rowan when he gets his cape! :)

Super Rowan C TinySuperheroes is much more than a cape, but it’s where we start! Our Waiting List is full of amazing kids waiting to receive their cape and join the Squad!

*COVID-19 update*

Per Rowan's nephrology team, no visitors, including friends and family, are allowed in our home for the time being. We are trying to do everything we can to keep this virus out of our home and away from Rowan!

Keep washing your hands and staying safe out there!

Thanks for understanding

👇🏼

As promised, I created a page for my Avon store so not everyone has to see Avon posts if they're not interested! Follow my Avon page Avon for Rowan's Journey to learn more about their products and see when I post about special offers, etc.!

We're feeling super blessed over here. My sister's friend set up a special event through her Thirty-One Gifts business. Now through March 20, she is donating her proceeds from all sales to Rowan's kidney fund!

I used to design for Thirty-One Gifts and it has a special place in my heart! Their products are awesome, good quality and super functional! Shop through this link to help raise money for Rowan and also treat yourself to some fun Items! :)

Thank you so much, Tanya Ponting, Thirty-One Gifts Independent Consultant!!

www.mythirtyone.com/us/en/1964901?pd=11651612

**Also, I just want to say thank you to everyone for all of the continued love and support we have been receiving. It is truly unbelievable and you have no idea how much every donation, event, prayer, and kind word means to us. It takes a village to raise a little one and we have the biggest and best village out there! Thank you, thank you!**

Thirty-One Gifts LLC More than just a bag

Yesterday, I shared more about Rowan's diagnosis on my blog for National Kidney Month! You can read it by going to https://amandacouchdesign.wixsite.com/rowbaby/post/rowans-diagnosis

Rowan's Diagnosis For the first day of National Kidney Month, I’m sharing Rowan’s diagnosis. When I was about 20 weeks pregnant with Rowan, he was diagnosed with LUTO (lower urin

I’m putting in my first Avon order tomorrow! I’m ordering some of the Anew Anti-pollution Pore Strips to try! They’re 50% through the end of the day tomorrow! Only $7.99 for a pack of 6 nose strips! I’ve heard great things about them and will let you all know how they are 🥰
Let me know by tomorrow morning if you want anything, or click the link in my bio to order from my online store! 🎉
All proceeds from my Avon store will be used to help with Rowan’s medical expenses. I’ll be creating a separate Avon page for everyone that is interested in their products to follow! That way you don’t have to continue seeing Avon posts if that doesn’t interest you 😂

I'm putting in my first Avon order tomorrow! Let me know if you would like to order anything or if you have any questions about the products! :)

Visit my online store at www.youravon.com/rowansjourney

I just wanted to update everyone! We switched from using COTA to GoFundMe to raise online donations. We have a little more flexibility with GoFundMe and liked their platform better! If you already donated to us through COTA, THANK YOU!! We still get to put that money toward Rowan's medical and transplant-related expenses! Love you all!

Rowan is 10 months old! 😱🥰

We have started this "personal blog" page for everyone to be able to easily follow Rowan's journey. You can read Rowan's story on this page, on our GoFundMe site or on Amanda's blog.

GoFundMe: www.gofundme.com/f/rowansjourney
Blog: amandacouchdesign.wixsite.com/rowbaby/rowan-s-story

Rowan was diagnosed with LUTO (Lower Urinary Tract Obstruction), or sometimes referred to as BOO (Bladder Outlet Obstruction), when I was pregnant with him. This is when there is a blockage of the baby’s urinary tract so he can’t release urine or make amniotic fluid to grow and develop in. This backup of urine can cause damage to the bladder and kidneys, and no amniotic fluid can cause underdeveloped lungs. Rowan was born prematurely at 32 weeks with minimally functioning lungs and kidneys and a blocked bladder. He is now in end-stage renal failure, has a ureterostomy and is on oxygen 24/7. He spent almost 5 months in the NICU at Cincinnati Children's Hospital and is currently at home on dialysis until he is big enough to have a kidney transplant.

Thanks so much for supporting us on this journey and for all of the prayers and love we have received so far. Rowan is our little miracle baby and we are grateful to be his parents!

Love, the Couches 💙

P.S. We will use this page to post about fundraisers so keep an eye out! :)

Rowan's Kidney Transplant Journey organized by Amanda Couch At 20 weeks pregnant, Justin and I found out that our baby had LUTO (Lower Urinary Trac… Amanda Couch needs your support for Rowan's Kidney Transplant Journey

Hey everyone! Amanda and Lori (Rowan's mom and grandma) started selling Avon to raise money for Rowan's family. All proceeds will go to helping Rowan's family with kidney transplant-related expenses. Feel free to order directly from our Avon website at www.youravon.com/rowansjourney or direct message Amanda Couch or Lori Chinowth Jackson to submit an order!

Please share with family and friends! 💙

Update from Rowan’s monthly appointments!

“For some people, there wouldn’t be life without tube feeding, but for others they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren’t able to eat enough on their own to get the nutrition they need to live.”
-Feeding Tube Awareness Foundation
It’s crazy to think that Rowan might not even be alive if he didn’t have a feeding tube. Some days he won’t take anything from his bottle and constantly throws up any purées he eats. If we didn’t have another way to give him nutrition and medication, he wouldn’t be able to thrive and may not even survive. I’m so thankful for his Gtube! Fed is best! 💙

Feeding Tube Hacks:
✨Keep an extra G tube, extension, baby wipes and hand sanitizer in the car at all times.
✨Make sure you know how to put a new gtube in!
✨Create an emergency kit with extra supplies and anything you use frequently to put in your diaper bag.
✨Join a Facebook Group for feeding tubes. These parents are a great resource for support and tips.
✨Change the settings on your pump so it doesn’t constantly beep when it’s done!
✨Vomiting will happen. We keep burp cloths, baby wipes, and clorox wipes in all rooms of the house where we spend the most time with Rowan.
✨When we give Rowan his continuous feed overnight, we use a lunch bag to keep it cold so we don’t have to get up and refill the bag with milk in the middle of the night.
✨Get a feeding pump backpack! They’re perfect for traveling in the car or stroller!
✨Use a carabiner to hang the feed bag or backpack from. I use the carabiner hooks on Rowan’s stroller and in the car.
✨Snap-up onesies will be your best friend. It’s tricky to find them in sizes larger than 9M. I found some at and Baby that go up to 24M!
✨Organizing medical supplies makes life easier. We keep large boxes of supplies in our guest bedroom closet. I have a small cart in our bedroom with supplies that I use during our nighttime routine. In the kitchen, I have a drawer dedicated to Rowan’s medications and syringes.
✨Prime the Infinity pump manually before the first feed of the day. It is SO much faster than using the prime button.
✨Try a Gtube belt! I got Rowan’s on Etsy at that wrap around his belly and have a small Velcro flap so you can get to the Gtube.
✨Teach others how to use the Gtube and feeding pump. It gives me the ability to run errands without needing to be home at certain times to feed Rowan.
I will making this into a blog post with photos and links so be on the lookout! 🥰

A Day In The Life With A Tubie Baby 😍

✨A Day in the Life with a Tubie Baby✨
In the morning, after we get Rowan out of bed, I attach a new extension to his G tube so I can give him his first dose of medicine around 9:00am with a medicine syringe. Every time you give medicine or food through the tube you have to flush it with water to keep the extension piece clean. We go through tons of syringes every day and at night we have to soak, wash, and lay them out to dry to be used again the next day.
Around 9:30am, I prepare a bottle of breastmilk mixed with amino acids (for extra calories to help with growth) for Rowan to drink. Whatever he doesn’t finish orally will be given through his G tube. Before I start his first tube feeding of the day, I change out the old feeding bag to a new one. I have to do this every day to prevent bacteria build up from old milk. Once the remaining breast milk mixture has been poured into the bag, I prime the pump by letting the milk run through all of the tubing that is connected to the bag. Priming the pump ensures that there is no air in the tubing so Rowan’s belly doesn’t get bloated and gassy. Next, I connect the extension to the G tube in his stomach and I attach his G tube extension to the bag of milk. Once everything is connected, I unclamp his extension to allow milk to be pumped into his belly, turn the pump on, set the dose and rate, and start the feed. Rowan’s feed runs for a half hour and then I am able to disconnect him until his next feed. He eats every three hours during the day and receives 2-3 medications before every feed.
At the end of the day, I wash the skin around his G tube with water, soap, and a q-tip. We put Rowan to bed around 8:00pm and have to leave his G tube extension connected to his G tube so we can feed him overnight. Around 8:30pm, I give him another dose of medicine while he is sleeping. At 9:30pm, I mix one of his medications with salt and breastmilk to feed through his pump overnight. His overnight feed runs for 10 hours so I have to use cold milk and keep an ice pack around the bag so it’s able to run all night without the milk spoiling. The next morning we wake up and do it all over again!

Feeding Tube Awareness Week 💙

This week is ✨Feeding Tube Awareness Week✨ so I thought I would share some things about Rowan’s feeding tube journey for the next few days!
When Rowan was born, he was on such a high level of oxygen support that he wasn’t able to breastfeed or take a bottle. We used a nasogastric tube (NG tube) to feed him tiny amounts of breastmilk. An NG tube is a small tube that passes through the nose, down the throat, and into the stomach. It carried food and medicine to Rowan’s stomach so he could get the nutrition he needed until he was able to try to eat on his own. When Rowan transitioned to more minimal oxygen support, he was able to try bottle feeding and breastfeeding. He did great and loved eating by bottle, but he couldn’t eat enough to keep himself hydrated and nourished. After a few weeks of bottle feeding mixed with NG tube feeding, we decided it would be best long-term to get a gastrostomy tube (G tube) placed.
Kidney babies often have trouble with growth and nutrition because their kidneys aren’t doing their job correctly. Being on peritoneal dialysis for 12 hours a night also makes their belly feel extra full because dialysis continuously inserts and removes extra fluid into the peritoneum to help rid the body of toxins.
Rowan still eats breast milk by bottle when he wants to and has also started to eat purees, but still doesn’t eat enough on his own to grow and develop. He also gets 10-12 doses of medications per day and there is no way he would be able to take them all by mouth so the G tube helps to make sure he gets everything he needs. He will most likely have the G tube until a couple years after his future kidney transplant when he learns to eat and take medications orally on his own.
G tubes used to seem so scary before Rowan got one, but I’m so thankful that we chose to have it placed and that he hasn’t had any huge issues with it. It makes our daily routine so much easier (other than all of the extra supplies and clean-up associated with tube feeding!). And thanks to the Gtube, Rowan is able to grow and thrive! I love my little tubie! 👶🏼