Super Carter

ATTENTION FOLKS!

A new superhero has arrived; one that will undoubtedly be on the big screen one day starring in his own Marvel film. Super Carter was born a determined fighter and is quickly growing into a dashing young boy with a quiet sense of wisdom, and of course a charisma that will charm anyone and everyone near him. (Rumor has it that he has a big love for nurses, they always get his biggest best smiles!) At not even two years old, Super Carter has already defeated battles that don’t show up in many of our worst nightmares.

Super Carter is diagnosed with chronic lung disease and feeding intolerance. Breathing and eating are an everyday challenge for Super Cater. Not being able to breathe is a common fear, and for good reason! It is terribly scary. But, this obstacle is Super Carter’s real life, and he goes through it everyday, However, being the Extraordinary superhero that he is, Super Carter overcomes this pain. Even when, it is constant he tries to smile. Even when, eating hurts him, he is still interested and wants food. He never gives up. He tries again next time. Not to mention, Super Carter has survived countless blood draws, labs, x-rays, breathing treatments, surgery and three hospital stays. Through all of this, he is still fighting, still smiling, still living life to the fullest!

“It’s scary watching them struggle and not being able to help. His surgery never scared me, I had a peaceful calm that he would be okay, but watching him fight and struggle to breathe after terrified me. Watching him turn blue and not knowing if he was okay, not something any mother should have to witness.” -Super Mom Kirsten

Super Carter’s story began on January 27, 2018. He was born at just 27 weeks old! A couple of weeks prior, Super Mom Kirsten’s water broke due to a partial placental abruption, leaving Super Carter in the womb with no fluid. The doctors opted to leave him in for as long as possible. As they were wheeling Super Mom into the OR, Super Carter decided it was time to come out! The lack of fluid in her utero led to his lungs being severely underdeveloped and have no surfactant. The ventilator and bubble CPAP that were needed to help him breathe were ultimately damaging his lungs. Every time the doctors tried taking him off the oxygen as he grew, he would crash and have major setbacks as far as the amounts of support he needed.

After 133 days in the NICU, it was clear Super Carter wasn’t improving. He couldn’t eat on his own, and was dependent on an NG tube, and oxygen dependent. His doctors were convinced his eating intolerances were related to his breathing. He was constantly crying as if in pain and couldn’t tolerate more than a few milliliters of breastmilk at a time. He was discharged with a NG tube and oxygen.

Two months later, Super Carter was admitted to Valley Children’s Hospital for failure to thrive. He had stopped growing, he was in constant pain, so much so that he was afraid to move or be touched.

“A week in hospital left us with no answers but the doctors’ expectation for us to hand our baby over to a surgeon we had never met for exploratory surgery. I refused. I took him home and pleaded with our pediatrician for a referral to a new GI doctor as well as a pediatric surgeon to have a G-tube placed for feeding as his NG tube was too high risk for aspiration. During this time I should note his lungs hadn’t improved; in fact, they had gotten worse with no answers as to why.”

Super Mom senses are an Extraordinary power, indeed. Super Carter and his family met with the surgeon, who after a few minutes of meeting with them, stopped and asked if anyone had ever mentioned Carter’s reflux. Yes, they knew he had reflux, but they had been assured that it was within the normal limits. The surgeon disagreed, though. As he was watching Super Carter during that initial meeting, he said that he acted and looked like he had refluxed about 20 times in that 5 minute span! He was almost positive that was main source of his constant pain and inability to tolerate feeds over 5mL. He ran a couple of tests, and sure enough, his reflux was worse than ever expected! It was constantly happening even hours after a feed and was damaging his lungs more than they were already. He immediately scheduled surgery for the following Monday.

“We arrived to pre-op, and again, the surgeon took one look at Carter, and said I want a chest x-ray, he doesn’t seem like his normal self. I had felt that way, but to hear it from someone that had only met my child twice confirmed my paranoia.”

The x-ray was incredibly cloudy. Surgery would have to wait. As it turned out, Super Carter had developed RSV – in the middle of summer!  His lungs had even more of a set back, he needed 4x the amount of oxygen, medications went from as needed to 6x a day. His surgeon refused surgery for 8 weeks to let his body recover. When the day finally came, Super Carter had a G-tube placed and a Nissen fundoplication.

“The baby that came out of surgery was vastly different than one going in. The fundoplication helped reflux so much that my baby was excited to discover his feet, moved constantly, laughed non-stop, and smiled and started eating, started growing and developing.”

An AMAZING part of Super Carter’s journey is his older brother and sidekick, Super Tyson. Super Tyson has been there looking out for Super Carter from the start. He snuck into the NICU twice in search of Super Carter. While he did not get far, as he wasn’t allowed in, he did manage to catch Super Carter as he transferred from one side of NICU to the other. While Super Carter was in hospital he laid by his side, telling him it was okay and gave nurses the (2 year old version) run down of Super Carter.  When Super Carter was in surgery, Super Tyson sat patiently in the waiting room asking every surgeon that came in, “Dr, you got brother? Brother okay?” Super Tyson always makes sure that Super Carter is okay. Super Carter draws strength and comfort from his big brother sidekick. Idolizing him and wanting nothing more than to run and play with him.

New battles facing Super Carter are with intestinal dysmotility and his lungs. The road ahead is still long, but it is sure to be epic. There is no doubt that Super Carter, with his infectious smile, unwavering happiness, and incredible strength, will grow up to be one of the best superheroes this world has ever seen! (And of course his sidekick, Super Tyson, will be there to guide him along the way!)

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