Kinlee Rae’s Journey

07/20/2025

Kinlee is 10 months old today!!
It’s hard to believe the baby on the left is the same baby on the right. My baby girl has come so far from 1.9 pounds to now a whole whopping 19 pounds!! We are a chunker munker 😀 she is the happiest baby in the world! ♥️

06/25/2025

July 5th & 6th Parking on the prairie truck show!! Put on locally by Holton Walmart! At the Jackson county fairgrounds in Holton!

This is an annual event we’ve put on for our 3rd year now to help raise money for Children’s Miracle Network. The money stays local and goes directly to Stormont vail (where Kinlee stayed her first 4 months of life) to help save kids lives. Kinlee will also be at the 9am breakfast on July 6th! There will be lots of fun things to do (attached on the flyer) please come out have a good time for a good cause!!

06/07/2025

Come out to our local Holton Walmart and help support children’s miracle network all proceeds go directly to stormont vail hospital which is where Kinlee was born & stayed at for her first 4 months of life. I’ve been at Walmart and help raising money for the last 8 years and this means so much more to me now. We have a huge event coming in July (parking on the prairie) that Kinlee will make an appearance at!! Will post more about that soon 😀

The children’s miracle network event is still on! ⛅️🌧️
We will start it inside the store and move it to the lot after the rain. ☀️☀️

COME HANG OUT AND HELP KICK OFF THE CMN EVENT!!! 🎉🎈❤️

06/04/2025

A little Kinlee update ♥️

This sweet girl turned 8 months old on May 20th & it’s so hard to believe!!!

We had our swallow study done at the beginning of may and it did improve a little from our first one that she had on April 1st but it’s still not safe to give her bottle feeds. At her first swallow study she aspirated everything and at her last one she aspirated one of the consistencies & had laryngeal pe*******on on the rest of them so we are still on tube feeds with a NG tube. We see ENT at children’s July 7th to see if there is anything they can do to correct her swallowing issues and if there isn’t as of now our plan is to go the G tube route as they don’t wanna do another swallow study for 3 months & we don’t want the NG in much longer. We are still on 1/8th L of oxygen but we are allowed off for 4 hours during the day in 2 hour increments which is why we have no oxygen in these pictures and she does amazing without it!! We are getting so close to being able to sit up & we love playing with toys & are working on rolling over. She is growing like a w**d!!

05/08/2025

I entered Kinlee into the Hand to Hold 2025 NICU Yearbook then and now contest presented by Huggies. This celebration unites NICU (neonatal intensive care unit) families while raising funds to ensure Hand to Hold support services remain free to all NICU and bereaved families across the U.S. 100% of all proceeds will directly benefit Hand to Hold, a 501(C)(3) nonprofit that provides vital support, educational resources and community for NICU parents.

1 in 10 babies are admitted to the NICU each year in the U.S. Some stay for a few days for monitoring, while others may stay for many months, as they overcome challenges associated with prematurity, low birth weight, birth defects or major medical issues, such as heart defects. "NICU Graduation" is an emotional and celebratory milestone for families regardless of the duration. When a baby is born early or with special healthcare concerns, milestones have a very different meaning.

If Kinlee wins she will be the on front page of the yearbook plus other prizes. Help us raise money for a great cause and help this cute girl win! Feel free to share!!! Voting ends may 18th !!

05/06/2025

Hey everyone!!!!!

I haven’t updated about Kinlee since we were in the hospital last & she’s been doing okay we have been trying to toughen it out until her next swallow study which is TODAY!!!! finally!!! I am so excited an anxious for this. I am so ready to finally see what this shows from her last one. It’s been a long month just kind of waiting around trying to figure out what we need to do or if this is going to be more short or long term. I’m hoping today we will get a little more clarity & hopefully more of a plan. I am not sure what will happen going forward yet if she passes or fails but will definitely keep up with updates.

We did see her pulmonologist a couple weeks ago and since the feeding issues have came about and she has a NG now he has put a stop to doing anything weaning wise with her oxygen so that’s on a halt. We don’t go back there until the end of August so that’s kind of a bummer but I am allowed to give her a break from oxygen a couple hours here and there during the day. Other than that this girl is the happiest little baby ever. She has the best little personality and I just love her so much!! ♥️♥️

04/21/2025

HAPPY EASTER!!!! 🐰 🐣 I hope you all had an amazing Easter Sunday. Today was a special day as Kinlee received her name today. KawKahQua named after her Great Grandma Linda. ♥️

It also happens to be that Kinlee is 7 months old today!!! Thank you all for all the continued love and support these last 7 months yall will never know how much it means to me. ♥️

04/17/2025

Kinlee update. We are home!

We are home & Kinlee so far is doing better. I had multiple talks with her speech therapist & ultimately we decided together that we would wait on the swallow study since she did test positive for HPIV-3. We were afraid that if we did one while in the hospital and it was bad like we expect then they would send us off for surgery and it wouldn’t get done again because she’s sick & we don’t want another situation where we get transported with no progress. We were able to tweak her feeds enough to safely get her home & hopefully ride out these next 2 weeks until she does have her next swallow study.

Thank You all for the kind words and prayers. This has been exhausting but I know soon enough this will be behind us. ♥️

04/15/2025

We are still in the hospital.

Not really a whole lot to update. We do know that Kinlee tested positive for parafluenza 3 we don’t know if it’s related to her episodes or just a virus she has that we caught simply becausee they had to do a panel but she does not act like she’s sick. When we got here they stopped formula feeds & went to continuous pedialyte tube feeds of 28 ML per hour which is a little less than 1 oz per hour. She was not very happy with that change as her belly was never full lol today we started back on bolus feeds like we do at home and we did 3 oz of pedialyte over 30 mins tolerate it well so we did half formula half pedialyte 3 oz over 30 mins she acted like she was going to have an episode on the first one but did not thankfully. Here in a couple hours we will be starting her full formula feeds over 30 minutes like we would do at home and hope that she will tolerate them well overnight and into tomorrow so that way we can do another swallow study. They want another swallow study done before we go home but they want her to be tolerating her feeds so fingers crossed!! They are anticipating we will be here another couple days depending on what the swallow study shows.

04/14/2025

We are in the hospital again.

We are not sure what’s happening quite yet but Kinlee was doing amazing with the NG tube for 9 days. She was a completely different baby so happy & all the symptoms she was having were gone. On Wednesday I noticed they were starting to come back and they have gotten progressively worse since then so we got admitted at Stormont yesterday. We dont know the cause or the plan yet but keep my baby in your prayers. ♥️

04/06/2025

My baby girl is finally starting to laugh!! Cutest baby laugh I’ve ever heard ♥️♥️

04/05/2025

WE ARE HOME!!!

What a long week in the hospital it was..

So middle of March Kinlee got Influenza a and that lasted about 4 or 5 days and then she was completely fine. Well, around the same time I had noticed some pretty serious signs of something wrong (i thought maybe bad reflux) but I wasn’t for sure what it was. I was keeping in close contact with her palliative care doctor and they had me trying different things. We ended up in the ER twice with no answers. The things that we were trying at home were not helping so I just kept researching as her symptoms were getting worse and everything kept going back to aspiration. So I sent her palliative care doctor a video of what she was doing and I said I think she may be aspirating. She saw what she was doing and immediately sent us to the ER at Stormont. The ER doctor there brushed me off and said she’s a chunky baby there Is no way she’s aspirating she’s just congested suction her out she will be fine. Thankfully her palliative care doctor had my back & said no you are going to admit them and send them upstairs now. Anyways, we were admitted and the next day we had the swallow study and during the swallow study they tried every thickness they could possibly do and every ni**le they could try and she aspirated everything so we immediately went to have a NG tube placed. We agreed that she has probably been aspirating the whole time due to other reasons we looked back on and when she got sick it just made it worse so the PED doctor called Overland Park regional ped surgeon and asked if he would place a G tube he said he would so they transported us a few hours later and the plan was to have surgery the next morning.

So we get to Overland Park regional late that evening around 9:30 pm & the nurses have no idea what’s going on so we assumed we wouldn’t be having surgery in the morning so we just waited until the PED doctor came in to do rounds the next morning. He came in very unpleasantly I must say and said we aren’t doing surgery it was unnecessary she’s a chunky baby she doesn’t look like a former 23 weeker there is no way she was aspirating this whole time. He said that she was probably just aspirating simply because she had the flu for a few days a few weeks ago and she should be fine in a few weeks. He wanted us to do another swallow study and see specialist and do things that had already been done which would have us being there for days. I said if we aren’t doing surgery I want to be transported back to Topeka with the doctors who have been with her since she was born we were sent here only for surgery he said he couldn’t justify transporting us back because we were sent by ambulance. So with that being said I chose to be discharged with a NG tube which is a temporary thing that way I could get home so I could follow up with stormont and be in the care of those who know my daughters history and who have been with her since the beginning. I am responsible for putting the NG tube up her nose and into her stomach and I must say it’s scary & terrifying & when I told the DR there that I was uncomfortable with it he said “That sounds like your problem that’s what we have training for.” I am just so glad to be home and out of that place finally. We have many of follow up appointments next week so I should know more soon on the timeline of how long she can have this NG tube before surgery will happen.