Parker was born June 12, 2019, weighing just 3 pounds 13 ounces at Hunterdon Medical Center. He had to be under close watch due to complications during pregnancy and giving birth. Once he was born the complications changed from just being premature and possible sugar issues to learning he had a cleft palate. After 5 days in the NICU at Hunterdon Parker was transported to Saint Peter’s to meet their craniofacial team for discussion of what his cleft palate meant and to learn how we would be able to feed him.
During his stay at Saint Peter’s, Doctors came to the conclusion that Parker had Pierre Robin Sequence (PRS), in which the infant has a smaller than normal lower jaw (micrognathia), a tongue that is placed further back than normal (glossoptosis), and an opening in the roof of the mouth (cleft palate). This combination of features can lead to difficulty breathing and problems with eating early in life. After Parker’s tongue tie was cut to help with feeding his desaturation of oxygen episodes had gotten worse to which he had to stay on his belly or side with CPAP 24/7. Parker had become a candidate for a Mandibular Jaw Distraction (JD) surgery, which would move his small jaw forward and open his airways to improve his breathing. Saint Peter’s could not get their teams to do the surgery which led to the need to be transferred to the third hospital after 10 days in their NICU.
June 28th, Parker was transported to Children’s Hospital of Philadelphia, CHOP. It was at CHOP that a sleep study was performed, and we learned just how bad Parker’s breathing and desaturation of oxygen was. We learned he was desaturating 90 times an hour and that the JD surgery was needed as soon as Parker could put on enough weight and until then had to be on high pressure CPAP 24/7 and
was extremely positional. Since he was on CPAP, he was not allowed to work with a feeding therapist and had to be fed by nasogastric tube (NG tube). After the JD surgery was complete it took a few weeks for his jaw to be moved forward enough that he could breathe on his own. At that point we then worked on trying to get him to take a specialty bottle for cleft palates and to start weaning him from his pain medication from his surgery. After 81 days in 3 different hospitals Parker finally was able to come home with CPAP for when sleeping, a pulse oxygen machine, and feeding bags for his NG tube as he didn’t quite master the bottle yet.
Since coming home though things haven’t slowed down Parker still had to follow up with many specialist for both his PRS issues and other premature minor development issues including a Pulmonologist, Craniofacial Plastic Surgeon, Urologist, ENT, Audiologist, Ophthalmologist, Gastrologist, Genetics, a feeding therapist and a nutritionist. Parker was diagnosed with torticollis and plagiocephaly since being home which has him working with a physical therapist once a week, has him in early childhood intervention due to being delayed from his time in the hospital and now is causing him to need a helmet. He started getting severe reflux shortly after we got home which caused him to get an aversion to nipples and prevented him from learning how to use a bottle so we are still working with a feeding therapist to try to get him to eat orally. He’s also had to go back into the hospital for his second surgery to have the metal hardware from his JD removed and still has more surgeries to come like his palate repair and ear tubes in June.
This has caused mom to have to quit her job and be Parker’s full-time caregiver with all his appointments, therapies, and medical needs on a daily basis. Through all these constant appointments and medical battles Parker is still one of the happiest babies you will ever meet. Nothing seems to stop him, and he is such a strong fighter, he’s his family’s hero. No matter what, he always has a smile on his face.
