Note: To our friends and family who may be surprised or hurt upon reading this that we did not share sooner, please know that we kept this close to home. Your love of us and our children means the world to us.
I've spent a lot of time thinking about whether or not to write about this...the pro's, the con's, how I would feel writing it. A lot of time. I've started and stopped this post 5 or 6 times in the last four months and have wondered to myself if sharing would make any difference to me or anyone else. Josh even brought it up, saying it might be good not only for me, but for other people out there frantically searching Google for answers. And then this weekend I was reliving it all in my head while baby girl took a nap and decided that if even one person reads it and finds some hope or comfort from it, then it was worth sharing.
Right before my 30th birthday I found out I was pregnant. We were elated and I was sick almost immediately - yay morning sickness. Everything progressed as normal. All my tests were great, the ultrasounds were great, the heartbeat was great. Life was great.
The morning of my 20 week appointment we were talking about whether we thought we were having a boy or a girl. In just a few short hours we would find out! In that moment I knew that if it was a girl, her name would be Olivia. Josh loved the name and had been really pushing it for weeks but I wasn't sure until that morning.
We went in for our appointment and anatomy scan, found out that it was indeed a girl (I KNEW IT) and then we were told by the super sweet ultrasound tech that she was a little concerned because our baby had very short and very curved femur bones. Her femurs were measuring under the 5th percentile and even to our untrained eyes, were crescent moon shaped. Our midwife told us not to worry but that to be on the safe side we should see a specialist. We didn't panic. There was nothing to worry about.
But then we got home and started googling (always a bad idea...but something you will do no matter what because well, it's there and it's free....and you have to know more). And the panic set in. All of these horrible genetic diseases starting swimming in front of our eyes and I called the specialist to push them for an appointment the following day.
Our specialist and his nurses and ultrasound tech were amazing. Truly some of the greatest people I have met in the medical field (next to our midwife who I will worship forever...but more on that another day).
We went in bright and early the next morning and after a full scan by another super sweet ultrasound tech (they must be trained to be that way because seriously...they are just darling and I want to be friends with all of them), we were brought into the doctors office. All of my hopes of hearing "everything is fine there was no need for you to come in" were dashed. Our baby girl could have a number of diseases but the doctor believed it was either a) Down's Syndrome, b) a form of Skeletal Dysplasia, or c) nothing. I had already had a test for Downs but he had the nurse draw some blood for a newer test that would be able to detect it more accurately.
And then we waited. We hunkered down, held hands more often, cuddled quietly, and found ourselves wrapped around each other in the middle of the night looking for some comfort. A week later we got the call that she didn't have Downs Syndrome but the doctor wanted to see us back again in a few weeks to check on her.
Relief was followed by more panic. If she didn't have Downs Syndrome she could have skeletal dysplasia, but what kind? They ranged from not so good, to bad, to worse, to deadly.
We went back in a few weeks and the ultrasound confirmed our fears, her femurs were still very short and very curved. The doctor was concerned that our baby had something called campomelic dysplasia. He (quite bluntly) informed us that babies with that form of dysplasia have about a 5% chance of survival if they make it past the neonatal period. Josh had become an amateur doctor specializing in bowed femurs by reading more medical journals than I thought one person could handle outside of med school and thankfully he handled all the question asking and "what if" line of thinking while I just sat there stunned that this was happening. The doctor told us that the next step would be an amniocentesis if we were willing. We had discussed it in advance and agreed to the procedure. While we knew that a diagnosis wouldn't cure our baby, we wanted to be prepared to handle whatever it was.
The doctor performed the amnio right there (shocking Josh who thought it would be done in a sterilized room in a hospital or something). I wouldn't wish it on my worst enemy. It's not painful so much as emotionally draining and physically...well, weird. It hurt but the idea of what was going on was almost too much to handle. I got through the procedure gripping Josh's hand and almost fainted after he was done. I kept telling myself not to throw up during it because then they would have to stop and we'd have to do this all over again some other day. The results wouldn't be back for weeks. More waiting.
At this point in my pregnancy we had gone through weeks of ups and downs, of not knowing and then knowing a little bit, and then not knowing more. I had already spent hours lying on our bed crying, but knowing that I would get my baby the best care possible and that she would be okay. Her life might be difficult but we would make it beautiful. We had talked about what we envisioned her life would be like: how she would grow up big and strong, fierce like her mother, a survivor like her father. But now this...this 5% chance of survival. I spent the next two weeks emotionally curled in the fetal position. I was googling things like "how to handle a fatal diagnosis in a fetus". And I prayed, and held on to Josh, and hugged Elijah and kissed him fiercely (we kept him in the dark during all this). And one late night, as we held onto each other in the darkness, Josh looked at me and said: If we lose her, at least we had her. She is supposed to be our baby. And she will be so loved. If she is only here for a few minutes she will know that she is loved.
Those words became my mantra. My baby shower was coming up and we wouldn't know until afterwards what the results would be. We contemplated calling it off but immediately dropped that idea. Our baby deserved a party, no matter what.
The Friday before my shower I was travelling for work. It had been a long week away from Josh and Elijah. I had spent a lot of my free time talking to baby Olivia. I had decided to talk to her everyday about anything, telling her I was walking across the street to pick up her brother from daycare, or that I was making dinner and how I was mixing the ingredients together. Telling her about my day, about her family, her history, about me. I would feel her kick and simultaneously smile and tear up.
I was in a meeting when my cell phone rang and I recognized the number of the specialists office. Without a word I bolted from the room and answered the call. The nurse on the other end started with "Well...it's a girl, but I guess you already knew that." (OH MY LORD SERIOUSLY?! DO YOU NOT KNOW WHAT I AM WAITING TO HEAR?! GIVE ME THE RESULTS OF THE TEST ALREADY!!!!) After a quick conversation we realized she didn't have the results I was waiting for and needed to call me back. I called Josh and broke down. I didn't have it in me to talk to them again unless it was with real actual results. Josh had to call them and it turns out, the nurse didn't realize the type of results I was waiting for. She apologized and said she would talk to the doctor right away.
Five minutes later I got a call telling me the results wouldn't be in until Monday. Five minutes after that I got another call saying the doctor wanted to talk to me. The results had just been delivered.
My heart stopped.
He picked up the phone and I could tell he was smiling. I started to cry before he even had a chance to tell me that our baby, our beautiful, spunky, bow legged short little baby was going to be okay.
I looked up to the ceiling, smiled and said thank you. To him, to G-d, to the universe. Thank you.
I called Josh, and my mother, and my sister. Some of my coworkers who knew what was going on got tear stained visits from me that afternoon as I happily told them the news. I hopped on a plane and flew to Connecticut for my baby shower with a weight gone from my shoulders. I remember feeling like my lungs had finally opened up and accepted clean delicious air. I was lighter than I had been in months, holding onto my belly, talking to Olivia the whole way there.
The specialist suspected that Olivia's normal was simply short femurs. We were released from his care. During our last ultrasound at 37 weeks, we saw that her femurs, while still short and in the 5% range, had finally straightened out. The specialist and his wonderful ultrasound tech visited us in the hospital after Olivia was born. He looked her over and confirmed that she really did seem just fine.
We've had our moments of concern like when a nurse said the crease in her palm was a marker of Downs which caused us to look at her eyes and nose obsessively, or when she got a little stronger and started sitting up and we saw her legs were turned out a bit and oh my goodness are they really short? are they curved? do they look curved because they are or because her thighs are so chunky and that is just chunk?
But with every doctors appointment we are reminded that she is just fine and with every cold, ear infection, sleepless night, I am reminded how just a few short months ago I would have given anything for just a cold, just an ear infection, just a sleepless night.
When I think back on those weeks of not knowing, the countless conversations we had while I sat in this very seat, it is so clearly etched in my memory. It isn't foggy or grainy but clear as glass. However, those people don't feel like us. They feel foreign. We are so different, having grown and been so touched by the experience. And our child is healthy. For those whose results were not met with smiles and happy tears, their journey through the final weeks of pregnancy, birth, and life (as long or as short as it may be) of their child is one that will forever change them in profound and sometimes terrifyingly beautiful ways. I think of those families often. I keep them in my prayers and I hope that just one person frantically googling will find this post and experience some hope and peace from it. I know the forum posts and blogs that we read that had positive outcomes made those weeks a little less dark.
And for those of us whose children live, with a diagnosis or without, I pray that we never forget that fear. Because it makes us more present with our children, more available and alive with them. The memory of that fear reminds me that I will always give anything for just a cold, just an ear infection, just a sleepless night.
"Though she be but little, she is fierce!"
I've spent a lot of time thinking about whether or not to write about this...the pro's, the con's, how I would feel writing it. A lot of time. I've started and stopped this post 5 or 6 times in the last four months and have wondered to myself if sharing would make any difference to me or anyone else. Josh even brought it up, saying it might be good not only for me, but for other people out there frantically searching Google for answers. And then this weekend I was reliving it all in my head while baby girl took a nap and decided that if even one person reads it and finds some hope or comfort from it, then it was worth sharing.
Right before my 30th birthday I found out I was pregnant. We were elated and I was sick almost immediately - yay morning sickness. Everything progressed as normal. All my tests were great, the ultrasounds were great, the heartbeat was great. Life was great.
The morning of my 20 week appointment we were talking about whether we thought we were having a boy or a girl. In just a few short hours we would find out! In that moment I knew that if it was a girl, her name would be Olivia. Josh loved the name and had been really pushing it for weeks but I wasn't sure until that morning.
We went in for our appointment and anatomy scan, found out that it was indeed a girl (I KNEW IT) and then we were told by the super sweet ultrasound tech that she was a little concerned because our baby had very short and very curved femur bones. Her femurs were measuring under the 5th percentile and even to our untrained eyes, were crescent moon shaped. Our midwife told us not to worry but that to be on the safe side we should see a specialist. We didn't panic. There was nothing to worry about.
But then we got home and started googling (always a bad idea...but something you will do no matter what because well, it's there and it's free....and you have to know more). And the panic set in. All of these horrible genetic diseases starting swimming in front of our eyes and I called the specialist to push them for an appointment the following day.
Our specialist and his nurses and ultrasound tech were amazing. Truly some of the greatest people I have met in the medical field (next to our midwife who I will worship forever...but more on that another day).
We went in bright and early the next morning and after a full scan by another super sweet ultrasound tech (they must be trained to be that way because seriously...they are just darling and I want to be friends with all of them), we were brought into the doctors office. All of my hopes of hearing "everything is fine there was no need for you to come in" were dashed. Our baby girl could have a number of diseases but the doctor believed it was either a) Down's Syndrome, b) a form of Skeletal Dysplasia, or c) nothing. I had already had a test for Downs but he had the nurse draw some blood for a newer test that would be able to detect it more accurately.
And then we waited. We hunkered down, held hands more often, cuddled quietly, and found ourselves wrapped around each other in the middle of the night looking for some comfort. A week later we got the call that she didn't have Downs Syndrome but the doctor wanted to see us back again in a few weeks to check on her.
Relief was followed by more panic. If she didn't have Downs Syndrome she could have skeletal dysplasia, but what kind? They ranged from not so good, to bad, to worse, to deadly.
We went back in a few weeks and the ultrasound confirmed our fears, her femurs were still very short and very curved. The doctor was concerned that our baby had something called campomelic dysplasia. He (quite bluntly) informed us that babies with that form of dysplasia have about a 5% chance of survival if they make it past the neonatal period. Josh had become an amateur doctor specializing in bowed femurs by reading more medical journals than I thought one person could handle outside of med school and thankfully he handled all the question asking and "what if" line of thinking while I just sat there stunned that this was happening. The doctor told us that the next step would be an amniocentesis if we were willing. We had discussed it in advance and agreed to the procedure. While we knew that a diagnosis wouldn't cure our baby, we wanted to be prepared to handle whatever it was.
The doctor performed the amnio right there (shocking Josh who thought it would be done in a sterilized room in a hospital or something). I wouldn't wish it on my worst enemy. It's not painful so much as emotionally draining and physically...well, weird. It hurt but the idea of what was going on was almost too much to handle. I got through the procedure gripping Josh's hand and almost fainted after he was done. I kept telling myself not to throw up during it because then they would have to stop and we'd have to do this all over again some other day. The results wouldn't be back for weeks. More waiting.
At this point in my pregnancy we had gone through weeks of ups and downs, of not knowing and then knowing a little bit, and then not knowing more. I had already spent hours lying on our bed crying, but knowing that I would get my baby the best care possible and that she would be okay. Her life might be difficult but we would make it beautiful. We had talked about what we envisioned her life would be like: how she would grow up big and strong, fierce like her mother, a survivor like her father. But now this...this 5% chance of survival. I spent the next two weeks emotionally curled in the fetal position. I was googling things like "how to handle a fatal diagnosis in a fetus". And I prayed, and held on to Josh, and hugged Elijah and kissed him fiercely (we kept him in the dark during all this). And one late night, as we held onto each other in the darkness, Josh looked at me and said: If we lose her, at least we had her. She is supposed to be our baby. And she will be so loved. If she is only here for a few minutes she will know that she is loved.
Those words became my mantra. My baby shower was coming up and we wouldn't know until afterwards what the results would be. We contemplated calling it off but immediately dropped that idea. Our baby deserved a party, no matter what.
The Friday before my shower I was travelling for work. It had been a long week away from Josh and Elijah. I had spent a lot of my free time talking to baby Olivia. I had decided to talk to her everyday about anything, telling her I was walking across the street to pick up her brother from daycare, or that I was making dinner and how I was mixing the ingredients together. Telling her about my day, about her family, her history, about me. I would feel her kick and simultaneously smile and tear up.
I was in a meeting when my cell phone rang and I recognized the number of the specialists office. Without a word I bolted from the room and answered the call. The nurse on the other end started with "Well...it's a girl, but I guess you already knew that." (OH MY LORD SERIOUSLY?! DO YOU NOT KNOW WHAT I AM WAITING TO HEAR?! GIVE ME THE RESULTS OF THE TEST ALREADY!!!!) After a quick conversation we realized she didn't have the results I was waiting for and needed to call me back. I called Josh and broke down. I didn't have it in me to talk to them again unless it was with real actual results. Josh had to call them and it turns out, the nurse didn't realize the type of results I was waiting for. She apologized and said she would talk to the doctor right away.
Five minutes later I got a call telling me the results wouldn't be in until Monday. Five minutes after that I got another call saying the doctor wanted to talk to me. The results had just been delivered.
My heart stopped.
He picked up the phone and I could tell he was smiling. I started to cry before he even had a chance to tell me that our baby, our beautiful, spunky, bow legged short little baby was going to be okay.
I looked up to the ceiling, smiled and said thank you. To him, to G-d, to the universe. Thank you.
I called Josh, and my mother, and my sister. Some of my coworkers who knew what was going on got tear stained visits from me that afternoon as I happily told them the news. I hopped on a plane and flew to Connecticut for my baby shower with a weight gone from my shoulders. I remember feeling like my lungs had finally opened up and accepted clean delicious air. I was lighter than I had been in months, holding onto my belly, talking to Olivia the whole way there.
The specialist suspected that Olivia's normal was simply short femurs. We were released from his care. During our last ultrasound at 37 weeks, we saw that her femurs, while still short and in the 5% range, had finally straightened out. The specialist and his wonderful ultrasound tech visited us in the hospital after Olivia was born. He looked her over and confirmed that she really did seem just fine.
We've had our moments of concern like when a nurse said the crease in her palm was a marker of Downs which caused us to look at her eyes and nose obsessively, or when she got a little stronger and started sitting up and we saw her legs were turned out a bit and oh my goodness are they really short? are they curved? do they look curved because they are or because her thighs are so chunky and that is just chunk?
But with every doctors appointment we are reminded that she is just fine and with every cold, ear infection, sleepless night, I am reminded how just a few short months ago I would have given anything for just a cold, just an ear infection, just a sleepless night.
When I think back on those weeks of not knowing, the countless conversations we had while I sat in this very seat, it is so clearly etched in my memory. It isn't foggy or grainy but clear as glass. However, those people don't feel like us. They feel foreign. We are so different, having grown and been so touched by the experience. And our child is healthy. For those whose results were not met with smiles and happy tears, their journey through the final weeks of pregnancy, birth, and life (as long or as short as it may be) of their child is one that will forever change them in profound and sometimes terrifyingly beautiful ways. I think of those families often. I keep them in my prayers and I hope that just one person frantically googling will find this post and experience some hope and peace from it. I know the forum posts and blogs that we read that had positive outcomes made those weeks a little less dark.
And for those of us whose children live, with a diagnosis or without, I pray that we never forget that fear. Because it makes us more present with our children, more available and alive with them. The memory of that fear reminds me that I will always give anything for just a cold, just an ear infection, just a sleepless night.
"Though she be but little, she is fierce!"
