I had a typical pregnancy with Easton & Maxon – until I didn’t. Everything was good right up until Easton ruptured at 28 weeks. We made it to Huntsville Hospital in less than 30 mins; John Wayne literally got pulled over in Huntsville on the way! Once we made it to the hospital, I was a human pin cushion! My doctor ran tests of all sorts, gave me shots to stop active labor and shots to help with the development of their lungs, and put me on bed rest, in the hospital. For the next week the nurses and doctors were in and out of my room, drawing blood, doing ultrasounds, monitoring the boys’ heartbeats, and talking to me about the risks of preterm labor. During the monitoring, we found out that I had one placenta and two separate amniotic sacs – meaning identical twins, however Easton and Maxon are not identical! On August 22, 2017 I started having contractions again. I waited to tell the nurses hoping that it was just a fluke thing and that they would go away, but they did not! By 4:00 that afternoon I was having contractions so badly that I had to tell them. They rushed in and started monitoring the boys’ heartbeats non stop and called my doctor. While waiting on my doctor to get there, we had several NICU doctors come in and explain what was going to take place and that they would immediately take the boys to NICU. When my doctor arrived, he explained what was going to happen, and we got prepped and ready for the emergency C-section that was about to take place. At 7:49 pm Easton Knox was born weighing 3 pounds 1 ounce and 15.5” long. Maxon Case was born at 7:51 pm weighing 3 pounds 13 ounces and 17.25” inches long. After they were delivered, the NICU nurses and doctors took them straight to NICU, I only got to see them as they wheeled them by me out the door. John Wayne was able to see them and was able to let our families, in the waiting room, know that they had been born and were breathing on their own and had all their fingers and toes! He was able to go into the NICU while my doctor finished “putting me back together”. I was finally able to see them in NICU about 11:00 that night. We were not able to see them except for NICU visitation times, I cannot remember the exact times. I honestly think that that is when I lost my mind – literally – I have not been the same since. I was discharged the following Friday and had to leave them there not knowing when they would be able to come home. The next few months John Wayne and I were just trying to survive! We were back and forth every single day. We were tired, we were broke (figuratively and literally).
While delivery the boys’ my doctor sent my placenta off to be tested for infection to determine if they would need an antibiotic. When the results came back, I had developed and infection and they started them on an IV antibiotic. Then they sent Easton to have an MRI of his brain since he was less than 3 pounds 5 ounces. His MRI showed 3 separate grade 1 brain bleeds in the cerebellum. The cerebellum is the part of the brain that controls your “fine motor skills”. Typically, a grade 1 brain bleed clears up on its on and causes no lasting or long-term effects, while 2 of the 3 did heal one caused scaring, or gray matter as his neurologist describes it. At the time of the MRI and discovery of the brain bleeds, we did not know that it would affect all the things that it has.
While Easton was in the Intensive Care, we battled with apnea and Bradycardia, he was under Bili Lights, and was on oxygen. While Easton and Maxon both progressed to the Progressive side of NICU, Easton would have Bradycardia episodes and would have to move back to the Intensive Care side. He did this several different times before he finally able to stay on the Progressive Side. While on the Progressive side, Easton had 2 blood transfusions. He also aspirated 2 different times. While trying to figure out what was causing him to aspirate, we put him on formula rather than the breast milk I was pumping. We changed his formula several different times thinking that it was from acid reflux; we are still not sure why he was aspirating. While Maxon was thriving and meeting milestones, Easton was being him stubborn self and kept us on our toes daily. Maxon was able to come home on October 23. The guilt and heartache that I felt having to leave Easton there by himself pushed me over the edge. I was broken, in so many different ways. While John Wayne and his mom were at work during the day, I stayed home with Maxon. After they got home, I would get ready and we would go to the hospital till our last visiting hours were over. We kept this up for the next 3 weeks. Then.. there was this dr. (I will not name names) who told us that Easton HAD to have a G-tube put in before he would be able to come home. He said that the reason Easton was not eating properly – by their requirements – was a neurological issue. So.. that is when we started seeing his neurologist. She did not believe that the brain bleed was the issue since Easton was not having any other signs such as seizures or difficulty breathing. We fought having the G-tube put in, even the gastro doctor did not want to do the surgery but he advised us that if we did go ahead and do it then we could get Easton out of NICU and home with us. He told us that if we did not have to use it that we would take it out ASAP. So, on November 20 we had the surgery to place the G-Tube. The gastro doctor also did a fundoplication, where they tighten up the esophagus, Easton did great during surgery. The nurses would feed him through his G-tube but we still kept giving him bottles. On November 27 we were finally able to bring Easton home. We fed Easton when Easton was hungry with a bottle, we only used his G-tube to burp him since he was not able to burp from the fundoplication. On December 6 we had an appointment with the gastro dr and he told us that if we did not use the g-tube for anything other than burping Easton then we would remove it. He wanted to be sure that Easton would not need it before we removed it prematurely so in February 8 the gastro dr removed his g-tube and we have not looked back since!
After the g-tube was removed and we were all at home together, things were much easier on everyone. We were able to get on a schedule to fit our routine, which was so much help! Easton started having in home therapy in April 2018 and has had therapy ever since! We have not ever treated Easton any differently nor have we ever left him out of anything that we have done. We want him to be as normal as possible and we give him every opportunity to do so!
Why you did you enroll Easton in Hope Horses?
Ever since Easton was able to sit up in the slightest, John Wayne has had him on a horse! Easton fell in love with horses the very first time he sat on one! For Easton to be so comfortable on the back of a horse, it was a no brainer when I found out about Hope Horses!
What benefits physically, socially, and cognitively have you seen impacted since participating in Hope Horses?
Physically - Easton has become much stronger in his core since riding weekly which has helped him tremendously with his walking and balance.
Socially - I am not sure that Easton has ever met a stranger, so there has not ever been anyone who he has not been able to talk to!
Cognitively – Easton is a very smart little guy, some days he is literally too smart for his good, but being at Hope Horse he has learned more about Equine care. Also, the games that they play with him has given him more practice in learning what he has learned in school.
Why do you believe in the mission of Hope Horses?
There are so many children and adults with disabilities that, if it were not for Hope Horses and the volunteers, they would not ever have the ability to see much less ride a horse. The sense of feeling and belonging and “being normal” that each person feels before, during and after, mean so much to them.
What does Easton enjoy most about participating at Hope?
What does Easton not enjoy?! Easton does have a new found love for brushing horses! He enjoys tacking his horse and riding, but I am pretty sure that his most favorite part is Ms. Kelsey and Ms. Mariah!
What other benefits/goals do you hope Easton will accomplish at Hope?
Easton has an appointment August 29, 2024 at Vanderbilt with a team of doctors to see if he is a candidate for surgery to help with the stiffness that he has. But in the meantime, we hope to see Easton gain even more strength and confidence in his riding. The more he gains with Hope Horses, the more he will have during his everyday activities.
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