Greyson Lentsch

Welcome to our CaringBridge website! This is going to be the best way to keep all of our family, friends, therapists, and even former nurses in touch. Many of you know Greyson personally, but for those who don't, here's a little backstory. Greyson Michael Lentsch was born on December 1st, 2018, at 37 weeks 1 day. This pregnancy was the hardest. At our 20-week ultrasound, I was told Greyson had multiple birth defects - his heart, his brain, and his kidneys. I was told our son would have 3 outcomes. 1. If he made it full term, he would be brain dead. 2. He would survive the pregnancy but would have down syndrome and need heart surgery. 3. He would just need heart surgery. The third option was the least likely to happen. He was in the 1st percentile for growth, his cord blood flow was restricted, and the chance of stillbirth was incredibly high. Dust and I weren't ready to give up. Whether our son had down syndrome, needed heart surgery, or whatever else, we would love him the same. We were referred to a pediatric cardiologist who told us he didn't see an issue with the heart. Confused and somewhat relieved, we decided to play it safe and go for a second opinion. We met with a pediatric cardiologist at a different hospital who told us there was definitely a heart condition. Soon after, we were at Children's Minnesota for a consult. We met with the cardiologist and neurologist who would play a large role in the care for Greyson after birth. Greyson was diagnosed with a coarctation of the aorta, hypoplastic aorta arch, a larger left side of the heart, multiple VSDs, dilated kidneys and ureters, midshaft hypospadias, and ventriculomegaly. We were monitoring his heart rate and blood flow closely 2-3 times a week. Each time being warned the longer we went, the higher the chance of stillbirth...but taking him out early was a higher chance of mortality. Toward the end of the pregnancy, Greyson's growth plateaued and it was time for him to make his arrival. I was induced at 37 weeks when my natural labor took over. I was rolled off to the OR since the neonatal room was right next door, and gave birth to Greyson who came out breathing on his own like a champ - something we were told wouldn't happen. Greyson was in the NICU for a week, working on gaining weight - he needed to be at least 5lbs before his surgery. He was then transferred up the cardiovascular floor for his first open heart surgery at 11 days old where they repaired his descending aorta. They stitched a bleed during surgery, which might have caused the narrowing in his ascending to occur. This will be worked on within the year as well his mitral valve whose gradient has worsened. His chest was open for a couple of days before they went in and closed him. He was on numerous machines to help him breathe, more IV racks then I can count, and was in the best of hands. Some of his nurses became my best friends away from home. After Greyson recovered, we remained in the hospital until the end of January. We worked with an occupational therapist to teach Greyson how to suck, swallow, breathe...something that comes so naturally to kids. Taking a bottle was hard for him at first until he learned the process. Near the end of our stay, he was able to take half the volume he needed to. A peg tube was placed, so he could get the rest of the nutrition he needed. Once home, I got into the routine of administering meds through his feeding tube, tube site cares, as well as adjusting to our new schedule - around 15 appointments a month with specialists, therapists, you name it. A couple months down the road after discharge, Greyson started having severe acid reflux, preventing him from taking anything by mouth. This then affected his stomach's ability to hold anything. Even .2mls in his G tube would instantly come back up his throat. It got to the point where he was vomiting full feeds. We were scheduled for a G/J tube where the J would bypass the stomach and go directly into his intestines. This solved the vomiting issue but does raise concerns in the future for when he starts solids. Since his first hospitalization after birth, Greyson was admitted 3 times. Once for a viral infection, then feeding intolerance, and then low calcium levels as well as high liver enzymes. The low calcium levels and high liver enzymes popped up out of nowhere. After running some tests, Greyson was diagnosed with hypoparathyroidism. His parathyroid gland secretes some of the hormone he needs, but not much. Since this last hospital stay, we've had a heck of a time stabilizing his calcium. However, as his calcium levels got better, so did the liver enzymes. We've met with geneticists who have run DNA test after DNA test...each one of them coming back normal. Every single doctor is convinced some undiscovered, rare genetic syndrome connects all this. Neither Dust nor myself have any family medical history of Greyson's diagnoses. Greyson's team consists of cardiologists, nephrologist, neurologist, neurosurgeon, endocrinologist, urologist, genetics, physical therapist, occupational therapist, and soon to come medical therapist. He continues to be 100% tube fed 24 hours a day, all meds and feeds go through his J until we can get his stomach figured out. He's been through more than any one I've ever known. His will and determination is unmatched. He is our little fighter. We are incredibly blessed to have him here with us.

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