I guess the real uniqueness of our story started around 17 weeks in my pregnancy. During our “You’re having a ____” ultrasound, the focus was instead on a small sac of fluid found on the back of my wee babe’s neck. Something that isn’t itself very serious, but nearly 100% of the time means there are other problems. From then on, it was test after test….an amnio, an MRI, blood work, Fetal Echos and ultrasounds 3 times a week until the day I delivered. Some of the ultrasounds lasted around 4 hours with different people coming and giving it a go to try and see or make sense of what others couldn’t. They knew what a few of the problems were, but she was still too small to be able to see everything. I have never known anyone who has been able to have three ultrasounds a week for most of their pregnancy. I thought it was pretty rad. Um rad, but seriously it mostly sucked….
When I was 31 weeks, I woke up my husband in the middle of the night and told him that I couldn’t remember feeling the baby move for several hours and that the doctor on call told me to get checked out. My husband still half asleep muttered “we have a really good parking spot, this better not be for nothing”. Before you think he is a total jerk, keep in mind that we live in Manhattan. There, that explains it, right?
When we arrived I got a steroid shot “just in case of early delivery”, and had to stay at the hospital for 24 hours to get the second round. I still had no idea that I would be delivering. I know, I’m also questioning what goes on inside all that hair of mine (I think it’s more hair). So after I got the second shot early Monday morning, I went in for an ultrasound before I would go home. Remember how many I had? I knew everyone and everyone knew me. Thankfully, they also knew my baby, so the sonographer was definitely alarmed that day at the sight of absolutely no movement on the screen. There is a rule that they have to give the baby 40 minutes to move. My ultrasound was at 11 a.m. so promptly at 11:40 someone from the high risk team came in and said a lot of things that my hair and I were too stressed and overwhelmed to pay attention to and he finished up by saying “in this situation…better out than in”.
The next few minutes was where it was like a movie. I was on a stretcher and this doctor was running while pushing me through the halls of the hospital. Running fast and yelling…doors were flying open…and other people were yelling “Is this her?!?!”. I remember being all “Her who? Her who??”. When we arrived at our destination I quickly realized we were in an O.R. I was put on the table and my clothes were immediately cut off of me. Finally my brain decided to join the room and alert me that I was about to have the baby via emergency c-section. Wait, I’m having the baby? But this is 9 weeks early! And I told my husband to go to work! And we are all the way Uptown and he is all the way in Battery Park City! And My sister’s wedding is this weekend in Memphis!
The entire surgery happened in less than 15 minutes. My doctor, who was miraculously there after 2 days straight of delivering babies, told me to crouch for the spinal. As fast as I was lying down they were beginning to make the incision. I remember feeling so many things. Scared for my baby, confidence in my doctor, loneliness for family and sorrow for my husband’s absence. I was lucky to never feel scared for myself and stayed calm throughout the sensations, tension and sounds of all that was going on. I kept thinking about how obviously spunky my baby was going to be, and how especially unique everything already was about her.
My doctor snapped me out of my thoughts with the words “Reagan, she’s here. The pediatrician just ran her downstairs.”, and I was handed a piece of paper with two tiny foot prints no more than an inch and a half in length. I named her Piper Jane, because it was the most spunky of all the names on our list. Also because my husband wasn’t there and I deserved to name her whatever I wanted.
Piper Jane has Cerebro Costo Mandibular Syndrome. If you google it, you will get my blog and a very small handful of other information on it. It is a very rare syndrome mostly affecting her respiratory and much of the bone structure in her torso. She has half the ribs she should, and their small structure prevents her lungs from inflating all the way, making a ventilator necessary. Most CCMS babies born as severely afflicted as my Pip sadly don’t make it through the pregnancy, delivery or first two years. Pippy will be three on May 21st, continuing to beat the odds every day. She has still never come home from the hospital, but she lives and smiles and plays and loves and gets spunkier and sassier by the day. She is my giant dose of sunny, helping me to remember how special being unique is.
From Reagan of Reagan’s Blob.
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Note from Design Mom: for the duration of my pregnancy, I’ll be posting advice, memories and stories about pregnancy, childbirth, adoption and growing a family on Wednesdays. You can find them all by clicking here. I’d love to hear your story or memory or advice, feel free to submit it to gabrielle@designmom.com.
{ 54 comments… read them below or add one }
What a beautiful story. I read Reagan’s blog… found it through a friend… and am consistently amazed and encouraged by your strength.
Reagan – You are such a good mother to your little Piper
what an amazing story. Piper, Jake and Reagan you are all fabulous.
Thanks Gabby for sharing Reagan’s story. She is truly an amazing mom and friend and Piper is such a source of inspiration for everyone who meets her.
This story really touched me and I truly hope this little girl continues to beat the odds!!!
Wow. Beautiful story and beautiful girl.
yeah reagan!
we love the piper. thanks so much for sharing.
Thank you for sharing. Your family is the definition of grace and strength.
So beautiful, thank you for sharing your story. And love that pretty dress Piper’s wearing!
Beauty begets beauty – like mother like daughter.
She does look totally spunky, and cute! I think you picked the perfect name for her!
What a wonderful story. She is absolutely adorable. Love the dress and her spunky braids and grin. What an angel!
I loved reading this. What an amazing story! And what a beautiful child Piper Jane is!
So touching! Thanks for sharing…..
Well, I know Piper must be a sassy sparkler between her fabulous shoes and her sunny smile!
Thanks so much for sharing this story!
Reagan, I think that you are one of the strongest and coolest women that I have ever met, and I know that Piper must have gotten a lot of strength from you. I’m jealous of both of your spunkiness!
This post inspired me to post about Reagan’s strength and how our children teach us to be who we need to be…..
http://todayhilary.blogspot.com/2010/04/had-another-post-planned_28.html
Amazing story, thank you so much for sharing it .
I’m so honored to have this story posted! I bet if piper jane had a tiny fridge she would put this up on it with pride. Thanks to everyone for their kind comments! Especially the one about grace. I never thought I’d see the day!
Thanks again!
Thanks for allowing us to peak through the window of your heart. The sunshine has warmed my heart :)
Hooray Reagan and Piper! Reagan was my roommate before she got hitched! She’s such a good mommy and I love to keep up with her and her family on their blog. Loves!
I love, love, LOVE this series of posts on pregancy and birth!
Beautiful girl, beautiful mama. Thank you so much for sharing Piper with us, Reagan!
This is awesome…and it was great to be lead to Reagan’s space from it too. Thanks Gabrielle!
I am stunned and awed by Reagan’s strength and Piper’s beauty. Thank you for sharing such an amazing birth and life story with us.
Wow. That is all I can say. What an amazing story of strength and love. It really helped me put things into perspective.
I seriously cried so hard. Am still crying actually. I went to Reagan’s blog and just cried over all the pictures of her beautiful littler Piper. I can’t imagine not being able to ever bring your baby home from the hospital. That’s what breaks my heart the most. It makes me want to wake Jane up and hold her all night, and makes me realize how much I take for granted. Reagan seems to be an amazing mom. Gosh, I need to stop crying and go to bed.
Hi Piper and Reagan,
Rarely do I ever comment on a story but hearing about Piper moved me. I went over to your blog and was in awe reading your posts. What a strong little girl. I loved all of the pictures, but my fave was the pic of her holding her princess flavored soup. So precious! You’ve got a special little girl there, and I love how you keep her looking oh so cute in her stylish dresses. :) Thank you for sharing your story, your strength and your spunky little girl with us. Her smiles warm my heart.
bravo reagan! it’s so nice to hear the details i never knew. i click over regularly to your blob and TOTALLY enjoy your punchy writing (and pictures, let us not forget the brilliant pics!) would i be too snooty to note that deardesignmom misspelled your name? just sayin’. xoxo
Reags,
I too was super excited to see you featured on DM. A great and worthy mom if I ever knew one. Thanks for sharing this story–there are many details I didn’t know. In real life Reagan is every bit as beautiful on the inside as she is on the outside…and that Piper–a beauty in her own right and a fighter to boot. Love you guys.
As a first time expectant mom, due in 5 days, I have really benefited from these stories of amazing women. But, I know Reagan and when she shared her story with me, I was most moved and inspired. Motherhood is such a gift and I am blessed to receive it. It is true, Reagan is a really amazing, devoted, loving wife/mom and Jake is a wonderful, supportive, takes such good care of his girls husband/dad, and Piper has the best combo in them. She is perfect! Thanks for sharing her story. They all deserve the recognition, love, support and prayers… they battle everyday, but are always grateful for what they have at the end of it all. You guys are amazing!
So sorry about the misspelling of your name, Reagan. (Embarrassing!) Just fixed it.
What an amazing story. Reagan, you are such an inspiration! And that Piper. I want to squeeze her! She is AWESOME.
I loved this story; I’ve met Reagan and she’s so cool. And a terrific mom.
Thank you, Reagan, for sharing your story. Your daughter is beautiful (just like her mama). I loved this story.
You are an amazing mom and Piper is ADORABLE!!!!
Reagan,
I feel like I’m totally name dropping by commenting on this that I (sort of) know you because my lover went to prom with you! You have one of the craziest stories that I’ve ever heard, little Piper is so beautiful and so are you. I hope that I would be as strong and optimistic as you are in such a tough but amazing situation.
I love this story more every time I hear it. Thanks for sharing it, Reagan! Sometimes I forget that I met you the day after you had that baby! Piper is an inspiration to so many of us… all while holding that soup can and smiling the day away. Love her!
Reagan, I love you and Jake and Piper. You are such a sweet family and I’m proud to be part of your lives. My goal is to meet Piper some day, but I get to enjoy her growth through your and Jake’s blogs and pictures. Thanks for your strength and lively expressions, they make my day and sometimes make me cry. Love ya, Aunt Susie
Reagan, I am in love with your blog. My experience, although not the same, is somewhat similar to yours but with a very different result. You probably don’t remember me but I know your dad pretty well and you and I went to the same high school. I found your blog through a mutual friend and love reading about Piper and seeing her beautiful face. Your strength and attitude through it all is so inspiring. I know that you have touched so many with your story. Seeing her makes me wonder what my life would be like if my little girl were still with us. Thank you for sharing sweet Piper with the world!
Thanks for publishing this story.
I love Reagan, Jake, and Piper! Such an inspiration and example of strength, love, and beauty.
Thanks for sharing.
Reagan,
You know I love little Piper. Almost as much as I love her mom’s hair. You are honestly and undeniably one of the most amazing mothers I know. What a lucky little girl to be born into such a great family as yours. She will never lack of love, that is for sure.
Kris
I am Piper’s grandma and Reagan’s. Let me just say, Piper gets her spunk from her mom, who is herself one of the most delightful of creatures. The first time (and each time since) I met Piper I felt like I was in the presence of a magnificent soul. In fact, I think everyone who meets her comes away with such a sense of her. She is a fighter to the core and a wonderful example of courage in the face of adversity. Ditto Reagan and Jake.
Ahhh… she’s darling! Her sunny spirit doesn’t appear to be the least bit hampered by her physical challenges.
You are such a superstar! You make me laugh and cry all within the same paragraph sometimes. Pip is the cutest ever, and I feel so proud of her even though I’ve never met her, or you. Thank you for sharing with us.
Reagan, I sort of blog stalk you, I apologize. ;) I knew Jake in school, and always thought highly of him. When I realized he married such a wonderful beautiful gal as yourself, I became enthralled in your story. You are a great family. Strong and sassy, funny and spiritual, all things I want to be. I’m sure Piper Jane will carry on with your wonderful traits. Best of luck!
What an amazing story.
God is so amazing! Thank you for being such a strong mother for sharing your story. God bless you and your beautiful family.
This is one of the most touching stories I’ve ever read…thank you Reagan for sharing.
Thank you so much for sharing this touching story with us Reagan! Very moving.
Reagan, it is wonderful that you share so much with so many. You are an inspiration. I love all three of you.
That brought me to tears. What an amazing story. Thank you so much for sharing.
What a wonderful family! Kari, like you say, you don’t understand, so maybe you should save your judgments.
sorryno no ingles yo tengo un hijo y tiene lo mismo que su hija el tiene 6 meses yquisiera como ustedes como estan sacando su hija adelante y los medicos que estan asiendo por su vida y asi nos pudieran ayudar a nosotros ya que los medicos a nosotros no nos dan muchas esperansas pero nosotros creemos en un DIOS desde que nacio saven anosotros nos dijeron que el iva avivir de 5 minutos a una hora yaven el tine 6 meses grasias espero algun dia poder ablar con ustedes mi correo en facebook es jesus_r7@hotmail.com ayi ay fotos de el DIOS lesbendiga
Reagan ,Jake and Piper, I read your story in the Readers Digest and I can’t get you out of my mine. I searched your name and found this. I was so touch and overwhelmed. Piper is so beautiful inside and out and she has the best mommy and dad anyone could ever ask for. I wish I could do something to help you have your baby at home close to you both forever. Good luck to both of you…