Nathan's Arrival
Any time a child is born it is a life-altering, "you will never be the same" kind of experience for a parent. Most of the time the emotions of that moment are described with words like "joy," "excitement," and "wonder." While all these can and do describe our feelings of the day our son, Nathan, was born we would also add to that list words like "worry," "shock,” and even.."fear."
The moment Nathan was born was the most confusing moment our lives, to date. Our son was here! Years of dreaming and nine months of waiting were finally over. Our son was here! And yet, in an instant the electric buzz of anticipation was replaced by the still weight of shock. The room was quiet... Painfully. Terrifyingly. Quiet.
I only caught a quick glimpse, but why was his hand bent over funny? More importantly, why isn't he screaming? Can he breathe?! We've done this before, we know what a new-born cry is supposed to sound like. Why is he not crying yet? And why didn't they give him to me right away? As I look across the room desperate to hear him crying I see that no, his hand wasn't just bend over funny... In fact, the four little limbs flailing on that table all look different than I had expected. My OB whom I love, the one who laughs all the time, who I was teasing just moments ago is now very, very serious. People keep coming into the room... More and more people in scrubs and white coats and and I hear some of what they are saying but none of it is to me. It's my son over there but no one is talking to me yet. And, why isn't he crying yet? In a moment of sanity, I beg Jonny to go take pictures - he has hardly left my side. His wide, dazed eyes must be a reflection of my own... At last, a cry! It's not long and it sounds funny but it's a cry. "Did you get pictures, Jonny? Are you sure?"
Finally, someone who wasn't in the room before - the kind that they call in when something is not right, comes over with my son swaddled up and quietly explains to me that something is wrong with my son's hands, feet and skull. They don't know what. She is going to show them to me one at a time before she lets me hold him. I nod, numbly as she peels back the blankets and shows me each arm and leg. I see, yes, I see... please let me hold my son. Please give me my boy. I just want to hold him. But, why is he still breathing funny? Does he just not have hands or feet? I have never seen anything like this. Breathe, Son. Just breathe. "Is he going to be ok?" I ask. The answer I get is that his time in my arms is up. He isn't breathing well and they need to get him to the NICU.
Sometime later - I don't even know how long, they bring him back to us in a clear box, chords and needles all over his little body. They are taking him to Children's Hospital downtown. Where is that? What does that mean? I 'm not from here. I didn't even know there was a Children's Hospital here. "When can we see him again? Is he breathing ok? Can we go too?" Oh, right. I just delivered. I can't leave my hospital so my son and I are in two different hospitals tonight. What. Is. Happening? “Jonny, did you even get to hold him?” A silent and tearful shake of his head.
And so we started calling parents. “He’s here” we say... and our voices crack. Because, you see Mom and Dad, he isn’t actually here with us. They haven’t even called us to tell us how to get to him yet. They really didn’t say anything. We don’t know. We don’t know if it’s life-threatening. They didn’t tell us what was wrong. We have to stay here tonight, Jen needs more meds. Is he going to be ok? We don’t know. We don’t know. We don’t know. We don’t know.
The next day we are exceedingly thankful for the people in our lives. My OB is back first thing in the morning. No, it’s not her day for rounds but she wanted to check on me. Sure, she’ll write orders so that I can leave throughout the day to go see my son - just be back for each dose of IV meds, ok? Yes, Dr. Thank you! Our family Dr. calls Jonny. She’s heard. She doesn’t know any real details yet but she assures us, they have lots of things they can do with surgeries etc. We’ll just have to wait and see. God gave him to good parents, she says. We hope so, we think.
My mom is already in town. My dad flies in from Dallas and Jonny’s parents skip his dad's scheduled heart treatment and hit the road from Baltimore first thing in the morning. Thank you for coming, all of you. We love you. We need you. Thank you. And so begins a long day of waiting, wondering, hypothesizing and trying not to fear. Reminding each other - God IS good. God IS Sovereign. Test are run, questions are asked but most importantly, his breathing is ok now. On his own in fact.
At some point, while I am back at my hospital getting my meds a doctor comes by Nathan’s bed where Jonny, my mom and his parents are sitting (my dad is still in the air) and says “Apert Syndrome.” No one had ever heard of this thing called “Apert” before. What was it? What did it mean? And so he took them to a table and sat and talked with them for an hour... And they came back to my hospital to tell me. “I’m actually really hopeful,” Jonny says. And so, on day two of Nathan’s life, we began our journey of understanding Apert Syndrome.
The moment Nathan was born was the most confusing moment our lives, to date. Our son was here! Years of dreaming and nine months of waiting were finally over. Our son was here! And yet, in an instant the electric buzz of anticipation was replaced by the still weight of shock. The room was quiet... Painfully. Terrifyingly. Quiet.
I only caught a quick glimpse, but why was his hand bent over funny? More importantly, why isn't he screaming? Can he breathe?! We've done this before, we know what a new-born cry is supposed to sound like. Why is he not crying yet? And why didn't they give him to me right away? As I look across the room desperate to hear him crying I see that no, his hand wasn't just bend over funny... In fact, the four little limbs flailing on that table all look different than I had expected. My OB whom I love, the one who laughs all the time, who I was teasing just moments ago is now very, very serious. People keep coming into the room... More and more people in scrubs and white coats and and I hear some of what they are saying but none of it is to me. It's my son over there but no one is talking to me yet. And, why isn't he crying yet? In a moment of sanity, I beg Jonny to go take pictures - he has hardly left my side. His wide, dazed eyes must be a reflection of my own... At last, a cry! It's not long and it sounds funny but it's a cry. "Did you get pictures, Jonny? Are you sure?"
Finally, someone who wasn't in the room before - the kind that they call in when something is not right, comes over with my son swaddled up and quietly explains to me that something is wrong with my son's hands, feet and skull. They don't know what. She is going to show them to me one at a time before she lets me hold him. I nod, numbly as she peels back the blankets and shows me each arm and leg. I see, yes, I see... please let me hold my son. Please give me my boy. I just want to hold him. But, why is he still breathing funny? Does he just not have hands or feet? I have never seen anything like this. Breathe, Son. Just breathe. "Is he going to be ok?" I ask. The answer I get is that his time in my arms is up. He isn't breathing well and they need to get him to the NICU.
Sometime later - I don't even know how long, they bring him back to us in a clear box, chords and needles all over his little body. They are taking him to Children's Hospital downtown. Where is that? What does that mean? I 'm not from here. I didn't even know there was a Children's Hospital here. "When can we see him again? Is he breathing ok? Can we go too?" Oh, right. I just delivered. I can't leave my hospital so my son and I are in two different hospitals tonight. What. Is. Happening? “Jonny, did you even get to hold him?” A silent and tearful shake of his head.
And so we started calling parents. “He’s here” we say... and our voices crack. Because, you see Mom and Dad, he isn’t actually here with us. They haven’t even called us to tell us how to get to him yet. They really didn’t say anything. We don’t know. We don’t know if it’s life-threatening. They didn’t tell us what was wrong. We have to stay here tonight, Jen needs more meds. Is he going to be ok? We don’t know. We don’t know. We don’t know. We don’t know.
The next day we are exceedingly thankful for the people in our lives. My OB is back first thing in the morning. No, it’s not her day for rounds but she wanted to check on me. Sure, she’ll write orders so that I can leave throughout the day to go see my son - just be back for each dose of IV meds, ok? Yes, Dr. Thank you! Our family Dr. calls Jonny. She’s heard. She doesn’t know any real details yet but she assures us, they have lots of things they can do with surgeries etc. We’ll just have to wait and see. God gave him to good parents, she says. We hope so, we think.
My mom is already in town. My dad flies in from Dallas and Jonny’s parents skip his dad's scheduled heart treatment and hit the road from Baltimore first thing in the morning. Thank you for coming, all of you. We love you. We need you. Thank you. And so begins a long day of waiting, wondering, hypothesizing and trying not to fear. Reminding each other - God IS good. God IS Sovereign. Test are run, questions are asked but most importantly, his breathing is ok now. On his own in fact.
At some point, while I am back at my hospital getting my meds a doctor comes by Nathan’s bed where Jonny, my mom and his parents are sitting (my dad is still in the air) and says “Apert Syndrome.” No one had ever heard of this thing called “Apert” before. What was it? What did it mean? And so he took them to a table and sat and talked with them for an hour... And they came back to my hospital to tell me. “I’m actually really hopeful,” Jonny says. And so, on day two of Nathan’s life, we began our journey of understanding Apert Syndrome.
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