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Jesse’s Story

By Jen Silbert

When my husband and I started trying to get pregnant, I was terrified of two things: preterm birth and having a sick baby. This fear was due to my older sister experiencing two preterm births, with one ending in loss and the other an eight-week NICU stay. After a difficult nine-month IVF journey to remove a hereditary gene I carry, we got pregnant after the second transfer. 

But at 25 weeks my water broke, I was diagnosed with pre-eclampsia and admitted to the hospital. Three days later, I suffered a placental abruption and was rushed in for an emergency C-section under general anesthesia. Our son, Jesse, was born at 26 weeks and two days, weighing only 1 pound, 5 ounces and measuring 12 inches long. I didn’t meet Jesse until the following evening, due to all of the anesthesia and magnesium I was on. And because he was intubated and on a certain ventilator, I couldn’t hold him until he was 6 weeks old. It took four people to assist carefully and safely getting him into my arms that day, and I only held him for 15 minutes before he needed to go back into his isolette. He was so incredibly sick. And it was all beyond traumatizing.

In those early days, I pumped breast milk for him, but his team decided it was necessary to also add a human milk fortifier to continue to have him gain weight and get extra nutrients. This was all through an NG-tube (Nasogastric Tube) through his nose. With everything else we had going on with Jesse’s lungs, I feel so fortunate we had that option and ability for him to get those extra calories to help him gain weight and get stronger. 

Jesse remained on a ventilator and was transferred to Children’s Hospital of Philadelphia on Day 100. There, he had four surgeries – including having a tracheostomy and G-tube placement – and remained there for another 191 days in both the NICU and then the PCU (progressive care unit). After 291 days in the hospital, Jesse was finally discharged to go home!

Since then, it’s been the greatest 2.5 years watching him thrive at home. He currently has chronic lung disease and still has a trach and G-tube. However, he’s almost weaned off of his ventilator, and he will outgrow his lung disease in the coming years!!! He’s expected to get his trach out soon and should be entirely equipment-free by age 4 or 5. 

He’s a true fighter—the bravest, strongest, smartest, and happiest little boy who continues to amaze us all every single day. Jesse is now 3.5 years old, in preschool, started soccer, and is continuing to grow physically and developmentally. 

And while he fortunately won’t remember any of this, the 10-month NICU journey and medical journey at home is something we, as parents, will never forget. However, our amazing team of NICU doctors and nurses saved our son’s life, time and time again for 10 very long months and for that, we are forever grateful.