September 17, 2011

Our New Story

The very first thing I thought when this doctor showed up in our postpartum room, out of breath and wanting to talk to us about Samuel, was "This is bad."
My second thought, just a split second later, was "Is he dead? Is he dead? IS HE DEAD???" It was screaming through my brain while I tried to quiet it enough to listen to the actual words coming out of her mouth. The morphine haze that I had been in since they put me in recovery suddenly evaporated.

Travis and I listened as she explained how Samuel had had some complications once he was taken to the nursery. He had started to turn blue and they rushed him down to the NICU. They weren't sure what was happening, but they were doing tests and they would keep us updated. They suspected his heart wasn't functioning correctly and they explained to us that he was also exhibiting some soft signs of Down Syndrome. He was stable, but they were keeping him in the NICU until they could figure out what was going on.

He wasn't dead...but something wasn't right.

This is how our family got a new story to tell. This is the beginning. Before this moment, we were not the parents of, the brother of, the grandparent of, the aunt/uncle/niece/nephew of a special needs baby. But after that day, after that moment, we suddenly became just that.

We had not chosen to do extra genetic testing while I was pregnant, so when my routine ultrasounds came back with normal results, we assumed everything was good and we never looked back. We had just spent an entire hour with our baby while I was in the Recovery room. Holding him, examining fingers and toes, staring at his precious little face. We noticed how his ears were folded over a little at the top, but that didn't mean anything to us. He'd been seen by at least a dozen people already and no one told us anything. I don't know if they didn't know he Downs or if they just weren't telling us yet.

After the out of breath doctor (I am sure she told us her name, but that is not a detail that stuck. What stuck was that this woman had just run to our room. It's not good when they run) left, Travis and I tried to absorb what was happening. Because of the c-section, I had to remain in bed until 10:30 that night. Travis would have to brave the NICU by himself. As much as I hated being in that room by myself, I hated the idea of Samuel being without one of us even more. As soon as they finished the testing, they allowed Travis to go visit. He was stable, breathing on his own, but until they knew what was happening, they were keeping him in there. He had to have IV antibiotics because of the c-section and my status as a Strep B carrier, but he wasn't on any other medications or treatments at that point.

Since Samuel was born at 10 in the morning, we had a whole day ahead of us of doctors and specialists. Some met with Travis in the NICU, while others came up to my room to give us news, updates, and opinions. It was an overwhelming time. The not knowing was the worst. Stuck in that bed, drugged up on pain pills, still reeling from an emergency c-section...I couldn't get my brain to stop going in circles.
Did he have Down Syndrome? What was wrong with his heart? Could they fix his heart? What is Down Syndrome exactly? Is this my fault? Did I not take enough vitamins? Is it because I got so sick that week in December? What if they can't fix his heart? On and on and on.

One of my best friends in the world lost her firstborn due to a heart defect and I could not stop thinking about her. I had spent a few days with her family in the children's hospital while they tried to repair his heart, and I kept remembering his tiny body surrounded by all those machines and the raw grief I saw etched on my friend's face. I could not believe this was happening. When you know someone who has to deal with those 1%-chance kind of things like undetected heart defects or SIDS or brain tumors, you figure the odds of something like that happening to you are even less. At least that's the way I figure it. But apparently, that is flawed logic. Or I just have the enormous privilege of being in an elite group. The .001 percenters.

1 in 800 babies are born with Down Syndrome.  It is the most common birth defect in the US. 50% of babies with DS have some sort of heart defect. Due to my fairly young age (29), I had about a 1 in 1000 chance of having a baby with DS. (It is estimated that 90% of women who are prenatally diagnosed with DS will choose to terminate the pregnancy...of all these stats, this is the one that most blows my mind.)

By the end of the day, we knew that Samuel had AVSD. (15-20% of babies with DS are diagnosed with AVSD.)  At that point, I wasn't very clear about what that meant exactly, despite the handout and diagrams the cardiologist had given us. We've since had a crash course in Pediatric Cardiology. Of all the things that could be wrong with his heart, this diagnosis wasn't so bad. They knew how to fix it and have a high success rate. At his one month follow-up with the cardiologist, we also learned that Samuel has PDA. We weren't aware of this before the appointment, but it will be fixed during the same surgery that will fix the AVSD.

As for the DS, the geneticist had stopped by the NICU to examine Sam and take a sample. It would be another 48 hours before they confirmed for us that Samuel does have Trisomy 21, which is the most common type of Down Syndrome. We learned that it is a genetic disorder and nothing I did or didn't do during my pregnancy had any effect on it.

We were lucky that Samuel was otherwise very healthy. He had a bout with jaundice, but after a day under the lights, it cleared up enough and he was able to leave the NICU after 3 days. Another 2 days in the regular nursery and we were both discharged. We've had at least two appointments every week since leaving the hospital, so it has taken over our lives in a very tangible way. We are learning the ins and outs (mostly outs in our case) of Social Security and Medicaid, and getting connected with Child Development Services for our county. We've seen the cardiologist and surgeon along with the normal newborn appointments with the pediatrician. We had a speech therapy evaluation this week to see about getting help with the breastfeeding.

Samuel is now seven weeks old, and in some ways, things are exactly as we expected them to be before we knew anything about his problems. He's a much easier baby than Luke ever was. He sleeps better, he gains weight better (even though he isn't able to breastfeed yet), he tolerates tummy time better. He will actually let you put him down to sleep. Travis and I are dealing with the joys of interrupted sleep and night feedings.
But in other ways, things are not going as expected. He's not showing the expected signs of heart failure. He is gaining weight easily. He doesn't have a heart murmur. Basically, he looks like a completely healthy newborn...and that's not good news. For various reasons I only pretend to understand, we will be doing the heart surgery very soon instead of waiting 4-6 months. They wanted him to be bigger and older before they operated, but because his heart isn't doing what it's supposed to be doing, he faces the threat of permanent damage to his lungs. So, they are doing it now. They finalized the decision on Thursday and now we are left waiting for a slot in the surgeon's schedule. It's not an emergency situation yet, but I would say it is high priority.

We have learned so much about Down Syndrome and have been embraced by so many families in that tight knit community in the last 2 months and I am sure we will be sharing that journey here and through Travis' column. But for now, we are focused on his heart and this upcoming operation.

Thanks for sticking with me through this lengthy post. And now here is a cute picture of my kid as your reward.

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