PREEMIE UPDATE: Dylan Eli

In our February edition of our Preemie Family newsletter we learned about the incredible Dylan Eli, a preemie born at 29 weeks, weighing 3 lb. 3 oz. and who spent 101 days in the NICU.  

Read more in an update by one of his Moms, India . . .

by India Lipton, Dylan’s Mom:

In the NICU

In the NICU

Dylan Eli was born 11 weeks premature on Valentine’s Day 2012, weighing 3lbs, 3oz, 15.75” long. Today he weighs 23lbs and is 33″ long. The journey to today has been nothing short of miraculous!

The list of ailments Dylan has overcome is long, but most very common in premature infants. Very weak and unable to breathe without assistance, Dylan battled a dangerous bacterial infection for 101 days in the NICU. With the infection throughout his body, no one was sure he was going to live… except his moms!

3 months on near constant heavy antibiotics to clear out the infection took it’s toll. Dylan was unable to breathe on his own, (neonatal respiratory distress syndrome) and required a ventilator to help him breathe; he was not able to maintain his body temperature without assistance, was not able to eat – first due to being premature and then later due to a complete GI system shut-down from being septic. He had developed non-surgical NEC and required total IV nutrition (TPN). He sustained bilateral Grade 3/4 brain bleeds in the first few days of his life that then caused Non-Communicating Acquired Hydrocephalus with a multitude of cysts in his brain. The Pseudomonas infection likely is the reason brain cysts have formed after the brain bleeds. He has had 15 brain surgeries that included permanent placement of 2 Ventriculoperitoneal (VP) shunts – a shunt is a tubing system to drain excess cerebral spinal fluid from his brain down to his abdominal cavity. He’s had a plastic surgery to repair his scalp after it got damaged during a shunt revision. He has had a central line placed and removed 2x, numerous spinal taps, reservoir taps and taps directly into his brain to manage the fluid and test for infection. He’s had multiple blood and platelet transfusions, was jaundiced and then had other liver problems due to his medications, had anemia, lack of platelets and immature immune system, PDA (blood vessel issue in lung due to prematurity), a heart murmur, immature eyes, crossed eyes (strabismus) he had 2 surgeries to correct the muscles in his eyes and a lack of proper sodium. Whew, I may have even have missed something!

After 101 days, finally at home!

After 101 days, finally at home!

After all this, most of Dylan’s health issues are resolved. He is delayed in his development so we do lots of therapies and he’s progressing amazingly well. He has moderate hearing loss that began sometime after April this year so on December 19th he got his 1st pair of hearing aids. Today, 23-month-old Dylan loves to eat, babble, play with the family’s Great Dane, Charlton, meet new friends and, most of all, laugh.

Growing Up Fast . . .

Growing Up Fast . . .

 

Charming everyone, of course!

Charming everyone, of course!

 

Once tiny, but always strong!

Once tiny, but always strong!

Sir Dylan’s strength goes without saying; he’s a spunky little fighter and earned the title Dragon-Slayer for beating the Pseudomonas “Dragon” and being so brave through so many surgeries. Interestingly, he was born in the “Year of the Dragon” (odd coincidence, it’s water dragon year and Pseudomonas lives in water). Just as you would expect of any Dragon-Slaying Knight, he’s a gentleman and is kind, showing a charisma that charms even the most stubborn of hearts. His smile is dazzling and his laugh will make your heart soar! Our family motto is, “Celebrate Everything!” and our amazing journey through the long NICU stay and beyond have really shown us, it’s not only possible, but important to celebrate the little things (even when they are really tiny!).

Dylan today . . . what a miracle!

Dylan today . . . what a miracle!

Photo Credits: L2 Family

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