First Month...Mandibular Distraction...Hopefulness

Less than 24 hours after Noah's birth he was transferred over to the local Children's Hospital. Immediately he was surrounded by a Pediatric team that included ENT, Plastics, and a Genetics Doctor. The renown Genetic Dr evaluated Noah and gave her opinion that this PRS case was not genetic as Noah's features did not resemble any syndrome however a genetics test would still be given and would take 4-6 weeks. During the next 24 hours we were educated on PRS. We learned the possibilities that PRS was linked to other syndromes and health concerns.As we continued to be educated and practically frightened with all the worse scenarios, our little Noah had a breathing tube and a feeding tube in place. The Drs discussed the various procedures that were performed for PRS. They seemed to lean towards Mandibular Distraction. .....

The next four weeks they evaluated Noah for Stickler's syndrome, checked him for a heart murmur, checked his hearing, evaluated his lungs and heart, had physical therapy, a speech therapist, and even circumcised him. All his tests would return normal. Before leaving we got the results of the genetics test that concluded that PRS was not genetically linked. This was a relief. Any genetic mutation put Noah at a higher risk of having complications of the heart or brain.  Doctors couldn't tells us exactly how this happen; they could only suggest that sometimes PRS is a result of fetal crowding.

We didn't know what to expect and how long Noah would be admitted. The first week they had him intubated and he barely was fed. I couldn't nurse him and because of his condition he wasn't given a bottle so I pumped breastmilk around the clock to stimulate production. I pumped every 2 hrs.They fed him very little via a feeding tube. By the end of that week they took him off the breathing tubes and tried letting him breath on his own. Noah did well and didn't need anything but a nasal cannula but required specific positioning. We hope this meant that he didn't need surgery but 3 days later the Drs confirmed that mandibular distraction was the best option.

On January 12th Noah underwent mandibular distraction. Thanks to the LORD surgery went well but Noah was intubated once again and spent about 4 days under sedation for pain management. He looked like a 4 month old baby due to the swelling on his face. When I spoke to him he would squeeze my finger and his eyes would break my heart. After a few days the the distraction began.
By week 3 Noah was up with little pain management. He now cried a whole lot. Looking back I truly believe he was hungry and suffering from acid reflux. We started bottle feeding with a special Habermann nipple for cleft palate babies. He did well but feeding took a long time and a lot of energy. He never finished his 70mls. He took 5-10 and the rest was via feeding tube. A speech therapist came daily to help.

By week 4 nothing but feeding was keeping Noah at the hospital. We were ready to stop our daily, full day trips to the hospital. Every day I prayed Noah would increase his feeds. And he did, slowly. Thankfully, a very special nurse urged  that we try another cleft palate nipple, the pigeon nipple, with him. The speech therapist wasn't very hopeful but as soon as we did Noah took all if not 95% of his feed. Within 3 days and at his 1 month mark Noah was sent home. 
He came home still with a feeding tube and we distracted for about 4 more days but there was nothing like having our baby home finally.

That month at the hospital, despite the wonderful care he received, really shrunk our little guy. He gained only 1lb more and grew only 1/2 inch.

Swollen after Mandibular Distraction...