Jude S ~ Super Hero Alias: Jude the Ad”vent”urer

Current age: 9-1/2 months old
Weight at birth: 4lbs (including 10z tumor)
Weeks gestation: 31 weeks 0 days
Time in the NICU: 111 days
Hometown: Kansas City, Kansas

Diagnosis, surgeries, complications?

Oral Teratoma, PDA, Obstructive thrombus, Progressive Posthaemorrhagic ventricular Dilatation (IVH grade 4s), Choanal atresia, Aspiration pneumonia, Cholestasis, GT/fundo, VP Shunt, Vent Trach dependent, Digestive complications. Removal of Teratoma, plus multiple additional surgeries. Multiple blood transfusions. Lung problems. Development delays. Among other things.

Why Should Your Children Be Recognized as Preemies of the Year?

Jude the Ad”vent”urer should be Preemie of the Year because of his ability to defy all odds. Before Jude was even born, he had to demonstrate super hero abilities to survive. Doctors told us that less than 1% of babies born have oral teratomas and of those babies a finite few are born with a teratoma as large as Jude’s. Multiple specialists warned that Jude would likely not survive.  If he did, his quality of life would be pitiful. Jude came early at only 30 weeks. We rushed to the hospital after going into labor. The doctors tried to stop the labor process but within 12 hours, Jude was ready to come out. He was born with a 10 oz tumor (3/4 the size of his head) growing from the roof of his mouth and descending out of the mouth. He was delivered via emergency exit procedure, and was, from what we know, the first successful emergency exit procedure. During delivery, a tracheostomy tube was placed and he was hooked to a ventilator. Days after birth, Jude experienced two grade 4 inter ventricular hemorrhages (brain bleed) as well as an open PDA. In addition, Jude’s primary physician that diagnosed the IVHs, proposed that the likelihood of developing Cerebral Palsy as a result of the IVHs was almost inevitable. Days before the removal of the tumor, doctors discovered brain clots on each side of Jude’s brain. These clots, if left untreated, would cause enough damage to the brain to eventually lead to death. Jude would require inter muscular Lovinox® injections twice daily for the next three months. The tumor was surgically removed shortly after, approximately one month after his birth. Due to damage from the tumor, Jude has several oral and nasal malformations. Following the surgery, Jude had to wear a custom brace 23 hours a day for two weeks on his head which reshaped his jaw-line, which was terribly malformed, caused by the weight and size of the tumor. Due to two different cases of aspirated pneumonia, the doctors felt that Jude required a fundoplication in addition to the g-tube placement. His stomach was extremely small. The doctor said it was the size of a blue berry. He was on a continual 24hr feed through his g-tube, with his stomach having to be vented at all times. Because of the tumor and pneumonia, Jude was placed on an oscillator multiple times. At almost four months, Jude was sent home fully dependent on the vent, oxygen support, and on a 22hr vented feeding. At six months old, Jude had a shunt placed in his brain to combat hydrocephalus, and enlarged ventricles. Jude is currently weaning off the vent and decreasing his feeding time. In the next few years he will have multiple surgeries to repair the damage the tumor has done, in hopes to allow him to breath and speak. He will also continue multiple therapies. Jude continues to astonish the doctors with his ability to overcome.

Using Three Or More Characteristics of a Super Hero, Please Describe Your Children.

Jude’s adventurous: Jude laughs in the face of danger! There is nothing too big for Jude to overcome. When Jude sets his mind to something he does it. Jude enjoys observing his surroundings, he eagerly searches the room. He will spend hours exploring the things around him. Jude has had many adventures in his life and always comes out stronger. We were told he would make little if any noise around his trach, Jude has not stopped making noise. Each visit to the doctors or hospital stay Jude takes on the adventure with eyes wide open, focused and a smile.

Jude’s Unconditional Love: Despite painful operations and an overall uncomfortable life style, Jude continues to spread joy with his infectious smile and comedic wit. Jude loves not only life but everyone he meets! Several of his allies in the fight, or nurses, have remarked that he is quite possibly the happiest baby they’ve ever seen. We are told again and again by countless people that a mere picture of Jude did more to brighten their day than anything else could. He has faced several painful surgeries and daily routines and kept a cheerful smile the entire time. He will smile at anyone that looks at him till they smile back and then he will show you what amazing things he can do. He is fueled on by the cheers of his people and tackles each villain as they come.

Jude’s indestructibility: Before his birth doctors speculated that he would likely not survive birth. When Jude was born, however, his indestructibility only increased. He then took on several surgeries and procedures, some of which were quite dangerous, and all of them painful. As with most superheroes, Jude has been placed in situation after situation which has tested his indestructibility only to come out on top. Jude is the only baby I know who will smile at the nurse after he’s been given a shot. “I’ve never seen anything like this” seems to be a common saying amongst the doctors when speaking in regards to Jude which is typically followed by “of course, it’s Jude.” Jude has come leaps and bounds from where he was and where they predicted Jude to be. Not only was he a rare baby before birth but in every situation, no matter how big or small, he continues to make his own way. Jude refuses to fall into line and is determined to continue making life exciting for those with him and those reading about him. He, like all superheroes, makes the stories worth reading.

As every super hero has an arch-enemy, Jude takes on adversity and misfortune using his super powers that are expected from any super hero. He’s craftier than a guy with a mullet, nobler than a pure motive, able to leap small buildings with a single bound (toy buildings with the help of his daddy, of course)…he’s Jude the Ad”vent”urer!

What advice do you have for future NICU parents?

Write down something every day, good or bad. The days seem to fly by and stand still all at the same time and you think you won’t forget a single second. Take time to be still and enjoy your baby. Make fun memories. And remember everyone is fighting together for your precious baby!