Help Baby Sutton Overcome Medical Challenges

Support baby Sutton through his medical challenges.

“Anemia” was the first of many diagnoses to come when my twin boys Sawyer & Sutton were delivered at 34 weeks gestation by emergency c-section due to severe pre-eclampsia.

Litte did we know, anemia was just the beginning of our litte Sutton's journey after being born at only 3lbs 13oz. After two intial weeks in the Catawba NICU, we were able to bring both of our sweet boys home to start "settling in" with their big sister Remi who just turned two in August. We had no idea that 4 months later we would still be "settling in' due to a suplex of medical complications.

Just a few days after bringing the boys home Sutton caught a nasty case of rhinovirus.

I could tell he was really struggling to breathe.

After THREE emergency room visits I was finally able to get a nurse to see that he was indeed not breathing (Apnea) for 10+ seconds at a time and would sometimes even turn blue around the mouth. He was immediatly admitted back into the NICU for another week to treat the rhinovirus and monitor his body. Once again after 5 days we were given the all clear we returned home to try to “settle in” again.

A week later Sutton began having apnea episodes again that his PCP noticed during a routine check up and immediately sent us back to the emergency room. Once admitted to the NICU for a THIRD time they noticed his hemoglobin was 7.2 and it needed to be atleast 10 so he was given a blood transfusion.

He seemed to improve with the extra blood and we were told that he was very symptomatic when his iron levels dropped so we would be given him additional iron at home. During the NICU stay it was taken upon the staff to double the formula volume he was taking at home. Which caused a future problem.

This Started a new dreaded diagnisis of Acid Reflux and things began to go downhill fast. The NICU decided to thicken his formula with oatmeal to aid the reflux which made things worse. We were discharged home anyways. Once retuming home AGAIN he began projectile vomitting & spitting up almost all of his fomula, each feeding so his PCP had him sent back to the ER to be tested for pyloric stenosis as it runs in the family. The ER did an abdominal ultrasound, chest xray, & labs and all came back normal. The physicians came to the conclusion that due to his history they wanted to transfer him to Brenner's Children Hospital in Winston Salem for a second opinion.

The team at Brenner's repeated all test (ultrasound, chest abdomina/ Xray, basic labs) and confirmed no abnormalities. The speech therapist was extremly upset that Catawba's NICU put him on thickened liauids at such a young age (about 2mths at the time) She decided to take him off of the oatmeal which did help solve the apnea spells. They told me he would out grow the reflux and he just needed time. We were again discharged home to work on "setting in".

Due to continued reflux issues Sutton's

PCP reffered him to a pediatric Gl at Levine's Childrens Hospital in Charlotte. We were seen by an amazing doctor who started with changing his formula from Nutrimagen to Elecere due to our oldest child being lactose intolorent. However, Sutton ended up getting worse.

He was spitting up/ vomitting 80% of what he was taking in as well as having diarrhea and losing weight. So we were admitted into Levines for failure to thrive. He was given an NG tube so that they could get his weight back up. His feeding was continuous at a very slow rate as well as adding in mediane for the reflux. Speech therapy evaluated him and noticed when bottle feeding, his formula was going back up into his sinus tract. However, ENT refused to see him at the time and told us he had reflux congestion and there was nothing, they could do. Ultimately after a few days of weight gain and improvement we were discharged again.

Sutton retuned to the ER for failure to thrive again as well as running a fever and screaming in pain. We were in the ER for over 24 hours where a resident told us that he had a stomach bug and that his team of GI drs had "More important things to do than see Sutton for an eval." (even though his GI wanted him there and is literally in the same building). With tears flowing and me begging for Sutton to be seen we were discharged without any remorse and against my will.

3 days later we were back at the ER again per the request of GI and Suttons PCP. This time GI had already arranged for Sutton to be admitted. During our stay they placed his NG tube back in to see if he could tolerate feedings any better. They also did a PH monitor and recorded an insane amount of acid coming back up so they changed his medication plan and put everything at max dosage for his size. These things seemed to help and everyone was comfortable with him being discharged home with an NG tube on October 1st.

Now Sutton is regressing again. He is screaming in pain constantly. Staying congested, lots of acid attacks that now contain blood. He is only resting for 15-20 min at a time. Spitting up about 40% of fluid intake. Spit up & acid are both coming out of his mouth and his nose. We had plans to see GI on 10/21, surgery consult 10/22, and ENT 10/23 all appointments are 2 hours away in Charlotte.

Surgery consult is for the following:

GI plans to insert a G-tube and do a Nissen fundoplication which is a surgical procedure that treats GERD. His Surgeon will wrap the top of his stomach around the bottom of the esophagus to create a new value and strengthen the lower esophagus sphineter to prevent stomach acid from flowing back intò the esophagus and irritating the lining.

But now we’re facing this new battle with the

presence of blood in his NG tube and stomach acid so we are unsure of what our future holds other than lots of travel, lodging, food, and medical expenses. Our 2 year old Remi is suppose to have her tonsils and adenoids out on 10/15 as an inpatient procedure at Catawba on top of everything else with Sutton and storm damage and loss.

We ask that if you feel led to donate funds as we work to get our sweet Sutton as healthy as his twin Sawyer and big sister Remi. If you can't help with funds your thoughts and prayers are just as appreciated.