Little Fighter Needs Your Help

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Hi Everyone!

So an update since the original summary. Alex, who just turned 1, is finally going to the zoo!! (The “Zoo” is actually home but the nurses don't like saying the H word because then the babies become more mischievous).

Alexander has come such a long way this past year and is such a happy and joyful baby. He always has a big smile for everyone that passes by. He even smiles in his sleep. (Even more so when I say he's a momma’s boy)

He is officially being discharged with a Broviac line for IV nutrition, Tracheal Tube, a G/J tube for feeds, Osteomy bag, and a groin hernia.

His hernia and osteomy are expected to be repaired when he turns 2. The doctors still believe he can come off all the medical equipment in a couple years and live a completely normal life. However, until then, he will have several doctor/therapy visits each week for at least the next 2 years.

In order for us to have the therapies/doctors that will work with our work schedules, we have to have him on both of our insurances, not just Medicaid. My insurance will cover his specialized nursing where he requires an RN instead of an LVN, while the therapies are covered under his mother’s. The deductibles alone are over $12k per year. There is also certain medical equipment that would greatly improve his growth/development that aren't covered by insurance. He’s developmentally behind and we want to give him every possible advantage to catch him up.

Insurance also limits the amount of supplies he gets per month so we will need to pay out of pocket for any additional supplies that are necessary. For example, we only get a couple vital monitor sensors (with how active he is, he usually goes through 4-5 a month) They are proprietary so you have to use specific ones. Much of his other supplies have the same issue where he needs more than provided. As with anything in the medical industry, everything is extraordinarily overpriced.

As always, please dont feel obligated to donate, especially to those that have already given so much. Thank y'all for visiting the page. Love y'all and God bless.

---Beginning Story---

Hi, we are Dylan and Ashley! Alexander was born 12 weeks early on March 17, 2024 and has had a rollercoaster of a stay in the Neonatal Intensive Care Unit at Texas Children’s Hospital in Houston. What started as a happy celebration of life became an intense fight for life.

Born at 1 lb flat at 28 weeks, our little guy has had a constant uphill battle. Since birth, Alexander has faced necrotizing enterocolitis 3 times, a massive brain hemorrhage, an inability to be fed natural milk, collapsing lungs multiple times, pulmonary hypertension, an inability to breathe without machine assistance, Retinopathy of prematurity (ROP), disintegration of part of his intestines, and consistent pain management medications.

Today, we see a light because he's come so far — Alexander is 15+ lbs and off the pain meds! When he finally gets to come home, he will need 24/7 monitoring. He will be coming home with a tracheal tube in his throat, a G-tube in his stomach for feeds, a Broviac line for nutrition if he can't be on full milk, medical formula, an ostomy bag (his intestine is sticking out of his stomach as doctors don't want to put them back together after disintegration until he grows more), in addition to medical equipment and in-home nursing care.

We've been told that even with a waiver and bumping up the list for Medicaid, it may take up to 1-2 years after discharge for it to be accepted. This leaves all medical expenses on us. Even on both of our insurances, Alexander will only have a couple of months of coverage for nursing, as well as the out-of-pocket maximum for both coming to $15k+ per year. This is just for the insurance. Whatever it doesn't cover will be fully on us to pay. We both have to work and need the dual insurance from our jobs to be able to even scratch the surface of his expenses. His doctor visit costs alone will be astronomical.

We will fight for Alexander’s survival and do whatever it takes, even if we must go bankrupt to do so. Life is so precious and he is making great progress. The doctors see a future for him where he can live a normal life without machine assistance and we will do whatever it takes to get him there.

Any help you can provide would be a Godsend to us, our family, and his future. We appreciate your time and thank you for reading Alexander’s story. God bless!

Dylan, Ashley, and Alexander (the Great)

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