Kamora's Health Struggles: A Family's Plea

Hi, my name is Amanda and as humble as I try to be and prideful I am, I have to put my stubbornness to the side. My daughter, Kamora, 6m old, was born prematurely on September 27,2024 due to several pregnancy complications including IUGR, gestational hypertension, gestational diabetes, and placental insufficiency. She has dealt with slow weight gain(failure to thrive), horrible constipation, reflux, and has caught several viruses. On Thursday, April 17, we brought her to The Children’s Hospital Of Richmond because she had been wheezing for a while and it wasn’t getting better after getting a shot of decahedron and doing nebulizer treatments every 4hours. It actually ended up getting worse. We learned after coming here it was reflux/possibly aspiration which is why the meds were not helping. They did a respiratory swab, and she was positive for 3 viruses at the present time. They wanted to admit her to watch how she eats and monitor her intake and output. She only takes 10-12oz a day. They want her taking 24oz a day. That's entirely too much in my opinion because she is little, and of coarse her stomach can't hold what a 14+lb 6m old can take. We've been doing speech therapy for feedings and will have a swallow test done in the next couple weeks as well as seeing GI next week. They said her tommee tippee bottles were too much for her and not shaped for her. They switched her to the dr brown wide base preemie and she is taking in half of her bottle which is progress!! They inserted an NG tube on Sunday, April 20th(tried to mess up her Easter but she loves life and nothing stops that loving personality and smile). She is struggling with the amount they are pushing to her and we have had to stop some feedings due to it being too much and her stomach not being able to take it. She had a lot of reflux yesterday that caused her tube to come out. The tube was re-inserted successfully. Her feeds have been running off gravity, this morning they started her feedings on a pump to go slower and more continuous to see if it will help with her GI issues. They ordered her feeding supplies and if everything goes good, we can leave Thursday. It’s a possibility though that we may have to stay longer depending on her being able to tolerate the volume of formula they want her to take. Right now it’s just trial and error. She is developmentally delayed also but she is working really hard in therapy and her favorite part is trying to get her toes. She hates the tummy and rolling and reaching, lol. She yells at everybody telling us how much she don't like it. Due to my pregnancy complications and taking a few days off to see my son graduate basic training from the army at Ft Leonard Wood, I have exhausted all my PTO. She will have several appointments for occupational and physical therapy as well as speech/feeding therapy. Kamora is the youngest of 8, 6 of them are still minors. I know life is really hard for a lot of us and it’s a struggle staying above water. If you’re able to donate, we thank you so much for whatever you can do.