If you haven’t already read Part 1
and Part 2
click on them for the beginning of the story.
We arrived at the pediatrician’s office and I don’t remember everything but I do remember the calm, kind, reassuring nature of our pediatrician. She confirmed, on physical examination, that our son appeared to have Down Syndrome but she was reassuring and kind. I was a wreck and for the life of me I could not make the tears stop. I just kept holding him tighter and crying. We decided it would be a good idea to have him seen by cardiology the following day. There was no murmur heard during an exam but there was a slight discrepancy between pulse oximeter readings on his hands and feet. We also spoke with our pediatrician about Cedar appearing to have jaundice, something we have dealt with before with 2 other of our children. We were scheduled to see a cardiologist the following day and the next 18 hours were a complete blur. I think I was on day 3 of no sleep and the emotions were overwhelming. At the cardiology appointment we were told that Cedar did, in fact, have 2 congenital heart defects, both a PDA and ASD. I remember being completely numb by that point and I felt as though I was outside of myself, my husband was an amazing rock and he understood and was elated at the news that our cardiologist felt that Cedar’s holes in his heart may well close on their own.
The further surprise in all of this was that Cedar’s bilirubin levels were high enough now to warrant an admission into the NICU. I went from crunchy homebirth mama to NICU admission in a matter of 4 days. It all became real at that point. The genetic testing would be done while we were inpatient getting phototherapy for Cedar’s jaundice and I was the weird mama who had a homebirth (that’s how all the medical professionals made me feel by the looks on their faces when I answered the “what hospital was he born at” question. This was of course compounded by the fact that my baby also had a diagnosis. I was adamant that I would be nursing my child, since that was the only thing in this whole situation that I was able to control, so I sat by his isolette for the next 36 hours Googling everything about Down Syndrome and crying big crocodile tears.
This is just about the time we finally decided to tell our families what was going on. I look back now and I so wish I could just put my arm around my 2016 self and tell me that it was all going to be okay. I wish I could have told myself how amazing and beautiful my son was going to be. I wish I could have told myself that I was going to smile more in the next 12 months than I have before and that the tears would in fact dry. I had no idea of the joy I was in for, I couldn’t see past the fear of the unknown at that time. Cedar’s birth changed me, I will never be the person that I was just 1 year ago, and I wouldn’t go back for the world. I have grown in so many ways and I have him to thank for it. It was during this time, of Googling and finding horrible information, that I began thinking about what I wish I could have found when I was sitting there in that hospital. That is why the website, Cedar’s Story, was born just 3 months later.