Phillip was born on August 18, 2017. I had no complications during pregnancy and all of our ultrasounds were great as far as growth and development with no red flags to suggest otherwise. Once he was born it took him a little time to breath and he had no interest in feeding so the nurses took him to the NICU to check blood sugar levels. His blood sugar was low so he was admitted to the NICU and started on an IV but still had no interest in feeding so they started feeds with an NG tube.
During this NICU stay the doctors spoke to us about his “coarse” facial features, high arched palate, lip tie, supernumerary nipples, sacral dimple and sparse hair. They expressed that the features on their own were nothing to worry about but with all of these combined they wanted to do some further testing.
While we waited for the results of those tests he had started oral feeds with a bottle and began to gain weight. There were also multiple ultrasounds that came back fine and several hearing screenings to which he did not pass. 2 weeks had passed and we finally received a diagnosis of PKS which was sort of a relief because were out of the dark and could face this head on.
Shortly after we brought him home the NG tube came out and we got the ball rolling with early intervention. He is currently 7 months and although he does not have much head control yet he continues to get stronger and is rolling onto his side and loves to kick. He has improved socially with smiling, screaming and cooing but does not show much interest in toys.
Phillip just had ear tubes put in place and his lip and tongue were clipped. We are still working to find out the extent and cause of his hearing loss and are keeping an eye on his vision since he has a drifting eye with some Nystagmus.
All things aside he is a healthy and content baby boy. He has taught us as parents how truly unconditional our love is. Our family and friends have been extremely supportive which has made this experience much easier.
We will live in the moment and remember that our good days will always outweigh the bad days. Phillip will know and understand that he so loved and wanted.
PKS Kids was the very first and has been the only resource that has proved useful. We are forever thankful and look forward to the upcoming conference.
If any other parents or family members would like to reach out and learn more about our journey you can email me at firstname.lastname@example.org