The GLAMoms Meet a Mom feature is one of our favorites and we LOVE to share moms with you! While watching a story on WILX 10 we learned of a St. Johns’ family – the Gatewoods – who are dedicated to giving back and turning struggles into snuggles!
We are honored to share Katie Gatewood. Katie and her husband, Gary, have three girls Kambria, Charleigh and Khloe and live in St. Johns and their second child, Charleigh spent the first 511 days of her life at Mott Children’s Hospital and this gave them the titles of ”Medially Complex Parents” which comes hand in hand with having a “Medically Complex Child.”
We recently had the opportunity to talk with Katie and she is unbelievable. Truly. One minute she is dropping off information about an upcoming event, then next she is dropping everything to help Charleigh – and at times very serious, life saving situations, then navigating the insurance companies rules, limitations along with all of the other “stuff” moms do daily.
This mom just does not stop and all while wondering (and worrying) what is around the next corner.
Next up though is Charleigh’s second birthday! Katie and Gary have worked with Mott Children’s Hospital and their Child & Family Life program to help other families! Learn more about this and more below.
Katie, thank you for being our GLAMoms Meet a Mom this week, and Happy Birthday Charleigh… and Khloe too! 🎉🙂
Katie, please introduce yourself!
Hi all, My name is Katie Gatewood and I’m from St. Johns, Michigan – born and raised. Love the small town atmosphere so much that even when I attempted to live in Grand Rapids I came right back and have lived here since.
After graduating from St. Johns High School I went to Lansing Community College where I took the phlebotomy course they offer. I never was much of a book learner, more hands on stuff worked best for me so this was right up my alley. I finished both their courses and went on to draw blood for almost 12 years. I worked for a few different places, and learned quickly that drawing kids and babies’ blood was my favorite. I really enjoyed this profession and not to toot my own horn but was quite good at it.
At 25 years old I met my husband (the reason I ended up moving to Grand Rapids) and that became a new adventure. He’s older than me and has 2 older children, a son and a daughter who are now 22 and 20 at the time they were 10 and 12. Can we say hard ages to come into the picture?! Whew!
I told him on our first date that if he was done having kids not to bother ever calling me again because having kids and being a mom was all I wanted in life. Much to my surprise he was open to the idea. Little did I know he would become my husband 2 years later. We have moved 5 times and finally settled into a home that is very close to all our loved ones.
We immediately started trying for kids and boy was that a challenge. We went through 8 years of infertility. That included 8 IUI’s (resulted in 2 angel babies), a natural loss, and an unexpected adoption of our oldest daughter Kambria. After adopting her, I became a stay at home mom, and watched some of our friends’ kids while at home.
I discovered that I needed to be working for that adult interaction and feeling like I was contributing so I went back to drawing blood. After a couple more years, I decided I needed a change. I then worked for company called Martin Brower, as a transportation assistant and I loved that job more than anything. During this time, Gary and I decided that we were going to divorce. I moved out and we tried being separated. However, we got back together after 4 months of separation and somehow by the grace of God naturally conceived our 2 youngest back to back.
Our first biological child Charleigh is who made us medically complex parents, and then there’s Khloe. Due to the medical complexity of Charleigh I had to quit my job and have been a stay at home mom ever since. Losing my income was a huge financial hit to our livelihood and us struggling feels like it’s my fault. We just recently learned we added another angel baby to the mix. We’ve been through more in our 8 years of marriage and 10 years of being together than most do in a lifetime.
We also have 2 dogs 🙂
How old are your children?
Kambria is 5 (and will be 6 in February). Charleigh will be 2 in December and Khloe just turned 1 in November.
What do you think is one of the best parts about being a mom?
One of the best parts to being a (girl) mom is having unconditional love and feeling needed. While it can be exhausting at times it’s also very rewarding knowing that I’m raising 3 of the strongest humans I can.
What is a piece of advice for new moms you wish you would have known when you were a new mom?
A piece of advice I would give to new moms is, every story is different… don’t try to keep up with the mom next to you. You’re not the same and neither are your kids or situation. Don’t compare or get down on yourself.
Tell us a little bit about Charleigh!
Our sweet Charleigh, whew…. Charleigh is a medical mystery, while being a medical miracle. She’s not suppose to be here, she was not expected to survive half of what she went through. Her diagnosis is a sporadic congenital disorder. It’s so rare she’s one in a million births.
At first when we were 8 weeks along they told us she had something called an Omphalocele. Her organs were growing on the outside of her body, later on we learned she had a couple heart defects.
Needless to say, my first successful pregnancy was a nightmare. Every doctor’s appointment brought more bad news. It wasn’t until birth, at 30wks and 6 days that we learned she was a lot worse off then they ever knew while she was in utero.
The day before Charleigh was born I learned I had severe sudden onset preeclampsia (oh and I was also Covid positive). When Charleigh came out her Omphalocele had ruptured, and she was rushed to emergency surgery. I didn’t get to see her but in pictures or FaceTime.
Gary didn’t get to be with me during my C-section as he was also Covid positive and we weren’t allowed to meet her for 3 days after having her. That’s when we learned our sweet pea had a list of problems.
She received the diagnosis of Pentalogy of Cantrell. This is 5 midline defects- in her case she had the omphalocele, diaphragmatic hernia (hole in her diaphragm) missing her xiphoid process, short sternum (missing some ribs) and 4 heart defects. Which actually then added another diagnosis called Tetralogy of Fallot.
She spent the first 6 months of her life growing new skin over her belly, because she was premature and her organs developed on top of her lungs she ended up needing a trach/ventilator half way through that recovery.
She was at Mott Children’s Hospital at this time which is an hour and a half from where we live. We traveled that trip every day. In June of 2022 we had a discharge date and were finally bringing her home. Until things took a turn and she had to have her heart defects repaired unexpectedly.
July 7, 2022 was quite possibly one of the worst days of my life. I was 3 months pregnant and Charleigh went down for what was suppose to be a 6 hour surgery that turned into 13 hours. She had so many complications from surgery. She got something called compartment syndrome and they were forced to cut her open from chin to pelvis re-exposing all her organs, could not close her sternum, and she had 3 perforations in her bowels. She was put on ECMO (Extracorporeal Membrane Oxygenation) and CRRT (Continuous Renal Replacement Therapy) for a week.
They straight up told us she probably wouldn’t survive. But guess what?! She did 😊!!! Not without many more trials though.
Due to her perforations, she ended up with an ostomy bag and many more issues to follow. Our sweet girl spent 511 days in that hospital (a 2.5 week break at Sparrow).
Charleigh came home on May 9, 2023 and has been growing and thriving. She’s doing great for now, and all her doctors are dumbfounded we’ve done so well at taking care of her.
What has been the hardest thing since Charleigh has been home?
The most frustrating part since having Charleigh home, isn’t how hard and medically complex she is. It’s been constant issues with her insurance companies, medical supply company and nursing agency.
It seems it would run more smoothly if everyone could work together but so far, it has been a challenge.
Insurance doesn’t recognize all of Charleigh’s issues as reasons to need private duty nursing, only her trach/ventilator. We are only allowed so many hours a month and it’s not enough.
We as her parents and her amazing nurses are the reason that sweet girl hasn’t been admitted to the hospital more, but want to know what?! Because she hasn’t had more hospital admissions, the hours are cut.
I often ask myself, what insurance company would rather pay the thousands of dollars it costs for her to be there than to just pay the nurses and keep her out of the hospital?! It seems backwards to us. It’s not seem fair that we even have to fight for private duty nursing.
And then insurance won’t cover some of the simplest things so when we lose power it’s not scary that she will run out of battery. We learned they don’t pay medical cribs either and she very much needed one.
Her DME company often shorts us on needed supplies.
Any idea how scary it is when you don’t have the proper stuff to take care of your child?!
How do you balance it all or find balance?
HA! HA! Balance?! What is that?? I simply do the best I can, I definitely fail often but 3 girls with 3 very different lives will do that. Do I forget about appointments?! Absolutely! Our life is the perfectly imperfect definition of balance.
We do have 5 nurses who have become family who help me balance the difficult tasks of juggling the 2 littles.
What is Snuggles from Charleigh?
In April before we were discharged from Mottl, the department called Child & Family Life was visiting Charleigh. This specific team became very near and dear to our hearts during our stay.
They use the bears to help siblings understand what their brother or sister might be undergoing but also for comfort and smiles. While visiting they mentioned they were headed to meet with another family whose sibling was about to get a trach but that they had searched high and low through the hospital for a bear to attach one too and couldn’t find one.
We left the hospital that day and I knew exactly what I could do to show our appreciation to them. I set out on a mission to collect all the teddy bears and pacifiers I possibly could so that they didn’t have to struggle helping families anymore. Snuggles from Charleigh was born.
At that time I didn’t realize they could go through over 1,500 bears in less than 6 months. But when we were there for a follow up appointment I asked how they were sitting on bears and learned they were out of them again. This was not okay, and that’s when I decided that going forward my hope is to have two teddy bear donations a year.
It just so happens to fall around Charleigh’s December birthday when the second drive would happen which is why we called this one Birthday snuggles from Charleigh ☺️
If you are interested in joining us, visit the Amazon Wishlist. It is easy and it is such a useful tool they need to help patients and siblings be a little more comfortable with everything that may be going on!
Tell is some about Charleigh’s Bags for Bears Fundraising Event!
First, Gary and I have recently taken a huge interest in cornhole. Through this hobby we have gained a welcoming new support system who encourages us both to be better in all aspects of life. And during the time spent with new friends at Baggin & Braggin Cornhole Event Center, they have taken an interest in Charleigh’s story!
In doing so our friends at Baggin & Braggin Cornhole Event Center have offered us to use their fantastic inside establishment for our very first semi-annual Bags for Bears Fundraiser!
A donation will be made in honor of Charleigh’s second birthday to both Mott Children’s Hospital and Sparrow is planned and most likely will take place the week before Christmas! This is our first fundraiser and we are learning a lot! If you are an area business interested in donating an item(s) to the silent auction, we would love to learn more about you!
If you would like to learn more about this event, or plan to stop by, here is the Facebook Event: Charleigh’s Bag for Bears
And all levels of play are welcome! If you are interested in playing, join us. If you are not interested in playing, feel free to stop by. There will be something for everyone!
What are you looking forward to as we are moving into 2024?
As we move into 2024, my only hope is for positive things. We need a break from all the bad. So my focus will be trying to remember that while our lives are hard it can always be harder. We also hope to form a foundation in Charleigh’s honor.
Here are a couple questions to get to know you better 🙂
What gets you up in the morning?
I usually don’t get to wake up to an alarm clock, Khloe is my alarm clock at all hours of the night. But my coffee is Diet Coke, if I don’t have that you better look out 🙂
What does your typical day look like?
A typical day starts with Khloe waking up, getting Kambria up for school, Gary heading to work, and I take Kambria to school. Then coming home and if there’s a nurse great, if not things are a tad more difficult.
Charleigh requires a lot of care hourly so it can be difficult to juggle that with Khloe under foot. For example, she needs medications, a bath and ostomy changes. Followed by feeding Khloe, going to get Kambria from school, take her to dance, dinner and hopefully getting everyone to bed at a decent time.
Which usually gives me a breather around 11-12 at night.
A Christmas tradition you are looking forward to?
I can’t wait to get family pictures done, with all of us. This will be our first Christmas with all of us home.
If you watch television, what is your favorite show?
Greys Anatomy
Strangest item carry on, purse, glove box or trunk right now?
Tweezers
What is the children’s book you most enjoy reading?
Goodnight Moon
Where are some of your favorite places locally to spend with your family?
Taking Charleigh around so many germs can be super scary although we love taking the girls to local events like festivals and carnivals.
What does a date night look like to you?
Our typical date nights lately are going to play cornhole. We get 4-5 hours playing and having a great time with our new friends.
If you could tell your 18yo self something, what would you tell her?
Stand up for yourself more, so when your 36 people don’t think your still a doormat
Mind sharing a mom trick another mom will be happy to learn?
Buy Little Sleepies, it’s a pajama company that grows with your child. While they can be pricey, they are worth it in quality and they LAST!
How do you prefer readers to connect with you if they would like more information?
I recently put Charleigh’s story on Facebook and she has her own profile. For updates on Charleigh, upcoming events and more, feel free to reach out the me at Warrior Princess Charleigh.
💜 😊
Thank you Katie! We are so grateful for the opportunity to share your story and hope your upcoming event brings you much more than you had hoped! We also look forward to seeing your family photos!
Happy Holidays, Gatewoods! We are excited for you all to be under the same roof this Christmas!
If you are interested in learning more about the Gatewoods, donating to Snuggles for Charleigh or attend the upcoming event, please see the links below:
Contact the Gatewoods:
Warrior Princess Charleigh (on Facebook)
Charleigh’s Birthday Snuggles (Snuggles from Charleigh)
https://www.amazon.com/registries/gl/guest-view/169CKK4F6GHAK
Charleigh’s Bags for Beans event on December 16
Facebook Event: Charleigh’s Bag for Bears
*all images provided by Katie Gatewood
Meet a Mom Sponsor information
Today’s Meet a Mom featuring Nicole Wiseman was brought to you by Boji Group. Boji Group specializes in Private-Public Partnerships, has offices in both Lansing and Birmingham and is headquartered in downtown Lansing.
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