This blog is named Cedar’s Story because that’s what it is really, a story of how an unexpected two-word diagnosis, Down Syndrome, changed a family into advocates for something they knew nothing about.
But, along the way, it has also become the story of so many other families that are all walking their own path with a diagnosis of Down Syndrome.
Being that Cedar was the impetus for this story, in the beginning, I have dedicated a category that is just for him, Specifically Cedar. This is where you will find pictures of the little one behind this big idea of mine, you can watch him grow, and let him teach you, like he is teaching us, that Down Syndrome is not something to be afraid of.
When it all began…
Cedar was born on 12/6/16 at home. Yes, you read that right. We had no idea Cedar was going to have a diagnosis of any kind and we have had a previous homebirth that was so wonderful, I wanted that same experience for us once again.
I dutifully submitted to a full anatomy scan which assured us that we had no major health issues that would preclude my plans of yet another homebirth experience. (yes, I am a crunchy mama, I would have fit in well as a hippie, minus the drugs and freelove)
The night I went into labor Cedar had more than one surprise in store for us. He would not only be born with designer genes, but, he wanted to jump into this world, feet first.
Yes, he was born at home, breech.
This is when we first got a good look at him, as always, our midwife checks our babies over and makes sure they are doing well.
We knew pretty quickly that he looked a bit different than our other children, after all we have 5 besides Cedar, he is the youngest. But, he had the same beautiful head of hair, the same soft baby skin, and the same glare that all the men in my husband’s family know how to muster.
This is the picture we used when we sent out our texts and announcements that Cedar had arrived.
Cedar’s Siblings adored him immediately.
Cedar was born on a Tuesday and we took him into the pediatrician’s office on a Thursday, we mentioned when we booked the appointment that we thought he had a unique look to him, possibly like Down Syndrome.
Our pediatrician was wonderful. She was very upbeat when discussing Down Syndrome but did confirm that Cedar appeared to have a extra lucky chromosome.
I was hit like a freight train, as most mamas are. I may have said the words when making the appointment, but I didn’t really believe them.
Our pediatrician wanted us to see a cardiologist as soon as possible so she booked us into one the following morning. We also had noted that Cedar appeared to be jaundiced and our pediatrician agreed and advised us to also get a heel prick done the following day when we went to the Cardiology appointment at our local Children’s hospital.
That first night after talking to the pediatrician was rough. Although we made the words “Down Syndrome” come out of our mouths when we made the appointment, I was totally in denial until that office visit.
We headed to the cardiologist appointment the following morning, I was kind of dumbstruck by that point and it was a long morning, I was also sleep deprived, which never helps anyone’s emotional status.
The Cardiology appointment was first, we had an echocardiogram done, it seemed to take forever, we then met with kindest, warmest cardiologist and nursing staff who advised us that though when you listened to Cedar’s heart through a stethoscope, there was no indication of a problem, he actually has a moderate Atrial Septal Defect and an open Patent Ductus Arteriosis. These are both very common heart conditions associated with Down Syndrome.
We were told that he would be monitored with echocardiograms every so often but that at this time, there would be no intervention until he was closer to pre-school age. We were also told that there was a pretty good chance that the holes would close on their own.
Next stop was the blood draw for jaundice. We had a very emotionally charged day and were just looking forward to getting home, and I wanted some much-needed sleep and just to snuggle with and try to get to know my new little one. We left the hospital, after the blood draw, and drove the 30 minutes home. It was just as we pulled into our driveway that our pediatrician called us from her personal cell phone to let us know that we needed to turn back around and head to the hospital for a direct admit to the NICU. Cedar’s bilirubin levels were high enough to be a bit alarming, though his coloring, as you can see in the above picture, wasn’t terribly yellow.
There were a lot of tears that night as I sat by his little isolette. I Googled everything I could about Down Syndrome because honestly, I knew nothing more than it was an extra copy of the 21st gene, but I didn’t know what it meant for us.
I felt like life was spinning out of control and I had very little control over anything. Cedar was nursing very well despite everything else so I insisted on nursing him and not pumping. I even wrote an entire post about my refusal to pump. (Why I refused to pump breastmilk for my baby)
I wasn’t really finding what I wanted to see or read online at that point.
I was given a book, the same one most new moms on this journey get, I wasn’t ready to read it though. Afterall, we were still waiting for a blood test to come back, they just drew the blood when we were admitted, surely there was a slight chance that they were wrong.
I remember reaching out to a girl I went to highschool with, I texted her during this time in the hospital. I remember her posting on facebook a picture of her daughter who had Down Syndrome. I hadn’t talked to her in 20+ years, but you know what? She responded to my message almost immediately, she was warm, welcoming, and helpful. I have found that to be true of every mama I have met on this journey. Every. Single. One.
We headed home after the overnight stay, bilirubin levels had dropped and the blood test would be back early the following week. I had this little thought for just a moment, these moms are so very kind, it’s a shame that I will go on a different path than theirs, I just thought that maybe, just maybe, my son wasn’t going to have 47 chromosomes.
Denial and emotions are powerful things.
I did reach out though, to my mom. I uttered the words to her, she was the first one I was able to tell.
3 days later, a phone call confirmed that Cedar indeed had 3 copies of his 21st chromosome.
At home we were just enjoying being together and having a new little one in the house before Christmas time. All the kids were so excited to have a new brother.
We have a Christmas Eve tradition of going to Chuck E. Cheese, we didn’t want to end this tradition so we took our new family member and had a ball.
We had a lot of fun, the sadness was there, but it was becoming more and more faint.
Our Christmas traditions went on as usual. The only difference was having a new little one. He was so good, so mellow, so unlike my other children in that he was not demanding or high strung. He began sleeping through the night at just before he was 4 weeks old.
I wrote this post a few days after Christmas. It was so strange because I sat down with plans of working on my Incidental Farmgirl blog that I have run for the last 4 years, but what came out was this first post. I found that with that first post, I felt more free. This post is how I chose to share our diagnosis with those not in our inner circle. I had tears streaming down my cheeks as I hit that “publish” button and I honestly was afraid, but, the response was overwhelmingly positive, kind, and supportive.
Unfortunately this new calm didn’t last long, we had another scary situation to contend with… (to be continued).
Leave a Reply