Thursday, September 5, 2013

My Daughter Was Born With A Cleft Lip - Our Journey - Part One



I have been struggling with the right words and the right way to start this series. I think because in a lot of ways this topic is hard to discuss. Because there have been really hard moments. But of course the joy…the best moments always outweigh the bad.

If your child is born with a birth defect, you are instantly haunted. Haunted by every moment of the past 9 months. Wondering why this happened? What went wrong? What defining moment changed it all?


I didn’t know I was pregnant those first few weeks. Makayla wasn’t planned. I was 21 years old. So I knew there had been a few glasses of wine and a few cigarettes those first few weeks before I knew.


I thought about the fact that I dyed my hair when I was 6 months pregnant. I thought about going on that teacup ride at the carnival. It wasn’t a fast ride…but??


You analyze every second because deep down you feel overwhelmed by the guilt. Because for you it’s not really what went wrong…it's what did you do wrong?




I never went into labor with Makayla. The doctor’s induced me at 40 weeks. Truthfully it had been a breeze of a pregnancy. I didn’t gain very much. I had some morning sickness, but nothing crippling. I worked right up until my due date. I felt good…I really did.


Day 1


The doctor kept the Pitocin coming...fun stuff, let me tell ya. I had contractions all day – but fairly mild ones. They actually sent me home that night because I wasn’t progressing. I dilated about 2 centimeters during the night. More fun times.


Day 2


Another day of contractions. Harder today. They let me take a long hot shower. It helped. But then the nurse put the fetal monitor in wrong. I was in SO much pain. I finally opted for an epidural in the afternoon. By that night I had still only dilated 3 centimeters. My doctor advised me that he’d have to deliver by C-Section. I wasn't sure how I felt about that. I wasn't against it by any means. I guess I was just afraid of the unknown. Afraid of any type of surgery.


So I was nervous as they wheeled me into the operating room. Very nervous. Makayla’s father and I weren't together. We had a really bad falling out right after I got pregnant. Six years down the drain. He had moved to another state by the time I went into labor so he was not in town for the birth. Thankfully my family  and friends were there. And my best friend Amanda was there. She actually went into the delivery room with me.


C-Sections are very sterile and cold. You feel tugging and pulling, but mostly I just felt numb from the drugs. Things were a bit foggy. And it seemed to go by very quickly.


I saw Amanda’s face when the doctor pulled Makayla out. Even though exhaustion and drugs were making me hazy – I saw the look. Something was wrong. That’s when the doctor said the word cleft. I had no idea what he was talking about. There was exchanges between the doctor and nurses. I heard "the palette is intake." I heard "bi-lateral cleft." It was like a foreign language. A language I would master before too long. 


Makayla was beautiful. She had jet black hair. A lot of hair. Her eyes were dark blue – a midnight blue. Of course they would change in time to a gorgeous dark brown. But the combination of dark hair and startling blue eyes was mesmerizing.


She was tiny. A skinny little thing. Didn’t have any fat on her at all. And she was very alert right from the start. Her eyes full of questions…like where the heck am I and who are you people? :)


But Makayla did have a bi-lateral cleft lip. Which at first was very shocking of course. It had not been picked up on any of her sonograms. I remember being wheeled back to recovery and I just lost it. Cried for a long time. Cried because I didn’t know what this meant…and I felt like I had failed somehow.


Cleft lip:


Noun


A congenital split in the upper lip on one or both sides of the center.




They finally took me up to my room. The nurses had to clean me up, and they took Makayla to the nursery. I passed out at some point and woke up a few hours later. It was after 2 in the morning…and I called the nurses’ station right away. I wanted my baby.


That first night with Makayla…that first night as a mother. There aren’t really words to explain it. You have to live it to understand. She and I set up all night. We watched Law & Order until dawn. She was wide awake most of the night. She loved to just look at me like she was figuring me out. I knew right then and there I had met my best friend. We were a team right from the start.




It’s funny how life works out. The next morning my nurse came in. Of course there had been a shift change, and I hadn’t met this nurse yet. But she knew who I was. She knew I had had a baby with a cleft lip. It turns out her son had been born with a cleft. He was all grown up by then – but she still remembered every moment. She talked to me for a long time. And I felt a little…better.


The next day my nurse came back. She had brought in pictures of her son before and after his lip repair surgery. She brought me tons of information and resources. Overnight it seemed I knew all about cleft lips. I felt better prepared to take on what may come.


Makayla and I left the hospital after 3 days. In almost every way she was a normal baby. But there were adjustments we had to make. Makayla couldn’t breast feed. She just couldn’t latch because of her lip. We had to use special bottles that we could squeeze in order for her to get enough formula. I hadn't made a decision about breast feeding...but life had made that decision for me. I don't think it took anything away from Makayla and I. We have such a strong bond. In some ways I think the cleft just brought us closer. Made me love her even more if that's possible. Made her stronger...made me stronger.


We also had to prepare…for surgery. That first surgery is done while your child is still very young. Usually around 3 months. So there was a whole lot more information coming my way. Makayla and I were starting a journey. Many days I just wished I could do it all for her. But all I could do was be there for her. Love her. Support her. Do whatever I could.

And so I did. 


I will see you all in Part 2 of this series. 


Until this please subscribe to my blog to be notified when the next part in this series is published.
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70 comments:

Tif said...

What a personal and touching story. I am fascinated, as I can relate to your feelings as a new mom, even though my son will be 9 in 2 weeks. I am curious to learn more, and to hear about how you deal with your own feelings as well as be supportive and positive for your daughter.
Tiffany

Mrs. April said...

Wow. This literally made me cry. I just had my first child eight months ago and some of our experiences were so similar. I also had to be induced, and even though my labor was only 12 hours, the Pitocin wasn't really working. His heart rate was dropping but I wasn't dilating so they almost had to do a C-Section. I was so nervous too! I completely hadn't expected it. But they pumped me with a bit more, watched his heart rate closely, and after an hour I was finally ready to push. I can only imagine how you felt, after such a difficult labor, dealing with the fear and anxiety of knowing that a surgery is coming. And that first night... THAT FIRST NIGHT! It's incredible. I can't even put it in to words. Your daughter is absolutely gorgeous, and your love for her is beautiful.

- April
mylifeasapril.com

Brandy said...

I have four children and this brings me back to the first night with each of them. When the wonder of the miracle I just brought in to the world far exceeds the need for sleep. I just stared at each of them and held them. What a wonderful feeling and bonding time. What a wonderful loving and supporting mom you are. Thank you for sharing your story and I am looking forward to part 2 of you Clef lip story!

Jenn Brockman said...

I have two girls. Both have invisible...... issues. I'm not sure what to call them when compared to something as visible as your daughter's cleft lip. We had a friend years ago who was an adult with a cleft lip that had never been repaired fully. I'm interested to learn what you learned and how it affected the two of you.

Anil Anvesh said...

Don't worry friend this has cure. A small surgery can correct it :)

~Kimberly said...

What a dollie! I have a niece and nephew born with cleft lip. They are grown now and beautiful, and living a normal life.

Your story is beautiful. Lots of emotion. I can't imagine going through that, but it's nice to hear that you and little miss are doing well! Best of luck to you on your journey!

Liz said...

She's so beautiful! I'm not a mom or anything, so I can't really relate to this in the fullest potential that the people before me could, but it's a really nice story. I can imagine it may have been emotional and possibly frustrating, especially to write this, but I admire how supportive you are. :3

George Wilks said...

This is a very touching story. I dont really know much about cleft lip but I feel everyone is born with something. There really is no "perfect" baby. Anyway, beauty is in the eye of the beholder, and you being mommy is the only one that counts.

Tatiana said...

She's beautiful! I also did not know I was pregnant for a while. I was having issues getting pregnant and had an irregular cycle, so I did not have a clue. I also had a few drinks and was basically concerned throughout, but I made sure I was healthy in every other way as soon as I found out. I'm glad you had support in the hospital from that nurse!

Felicias Red Door Life said...

She is beautiful. I can't imagine having to go through those doubts as a new mom. I love that your morning nurse was so familiar with cleft lips due to her own child, what a blessing that must have been.

Chrystal Mahan said...

Your story is touching, your daughter is beautiful. Thank you for sharing your story. Cleft lip, although can be traumatic as a new mom, is fixable. I've had so many friends who have had it, or their kids..and looking at them now you would never know.

Aimee Freeman said...

Thanks for the comment, Tif. My daughter Makayla is 7 now and I have 2 younger daughters as well. Last year Makayla had her 2nd surgery and we still have at least 1 more to go. I have wanted to write about her experiences and mine as well because cleft lip and/or palette is one of the most common birth defects. However I have never found as many personal stories, blogs, articles and so on as I would like to find. So I wanted to share our story in hopes that others will find comfort, understanding, resources and more through my blog. Thanks for reading!! :)

Aimee Freeman said...

Hi April. Thanks for commenting and for all your kind words.

That first night...I know. It's hard to explain it...but of course you know exactly how I feel.

Labor can be so scary because there is so much unknown. Even though I thought I was truly prepared...I wasn't. It rarely goes exactly the way we plan. But thank God the end result is a beautiful baby in your arms.

Thanks for reading :)!

Aimee Freeman said...

Hi Brandy. Thank you so much for your kind words! As hard as we try as parents, we always feels like we could be better. It really makes me feel good when someone says I am a good mom. We all just need to hear it sometimes.

Thank you reading :)!

Aimee Freeman said...

Hi Anil. Yes, Makayla is actually 7 now. She has had 2 surgeries, and still 1 more to go. But I wanted to start writing about her journey and my journey to share with others.

Thank you for commenting :)!

Aimee Freeman said...

Hi Jenn. You know I am not sure what's harder, the invisible problems or the more visible ones when it comes to children. I think it's just heartbreaking no matter what when your child is perceived as "different" in any way. I think that's why I wanted to blog about Makayla's journey and my own. I wanted to put a face and a name to birth defects. Even though I hate that word 'defect.'
I think as parents we need to talk openly and honestly with one another. There are no perfect parents or perfect children. Having a child with special needs in any way does not make us any less of a good parent or that child any less of a good child. We just face different situations than other parents may face. And that's okay...because it has certainly made me wiser, stronger and kinder.

Thanks so much for reading! :)

Kathryn said...

You are an amazing soul and have been blessed to have your daughter. I know a beautiful young women who has graduated high school and is in her way to college all with a cleft. Her life has been full and amazing as I am sure your daughters will be. I can't wait to read part 2!

MomMaven said...

Thank you for sharing your story. I know how difficult it can be. I have yet to share the story of my firstborn who only lived 2 days. Your daughter is beautiful and I can't wait to read the rest of her story.

Mrs. Stephens said...

Your daughter is beautiful. It's great that you are sharing this story and what's even better is that we live in a country that she can have surgery unlike other places that children live their whole lives without ever having any options. I can't wait to read more.

Kristin said...

Wow...your story is mesmerizing. I can't imagine all the emotions that are involved when you go through such an experience. It's kind of odd how people often joke about how they check the fingers and toes of a newborn and, as the saying goes, think everything is OK when they have 10 fingers and 10 toes. Having four children who didn't have any "visible" problems (one of my children was diagnosed with cancer at age 2) at birth kind of lulls you into this sense of how that's "normal," when it's not. Thanks so much for sharing...I can't wait to read the rest of the story.

Teresa Moody said...

I had a friend whose child was born with a cleft lip. She lives a happy life. Thanks for sharing your emotion journey. I can't wait to continue to read this story!

Aimee Freeman said...

Hi Kimberly. Thanks so much for commenting and for your kind words! :)

Aimee Freeman said...

Hi Liz. Yea, I have been wanting to start a writing series about this for a long time. It's not always an easy topic for me because there have definitely been some rough patches - and more are sure to come. But it has also been such a growing and enlightening time in my life. I am so better educated about so many different aspects of parenthood, birth defects, childhood surgery and more. God gave this to us because he knew that Makayla and I could get through it.

Aimee Freeman said...

Thanks George!

Aimee Freeman said...

Hi Felicia. Thanks for commenting. It really was a blessing to have a nurse who had gone through exactly what I was going through. I felt less alone, and I so very grateful.

Aimee Freeman said...

Thanks, Tatiana!

Aimee Freeman said...

Hi Chrystal. Thanks for commenting.

Makayla is actually 7 now, and we have been through 2 surgeries. A lot of ups and downs - and we still have a ways to go. That is why I wanted to share her story and my story. I hope that other parents who have children birth defects can take some comfort in knowing they are not alone.

Aimee Freeman said...

Hi Kathryn. Thank you so much for commenting. It is so nice to hear about the young women you know - it's really hard when something about your facial appearance is 'different.' There is no getting around it. It's right there for the whole world to see. It can either define you in a positive way or a negative way. For Makayla...she is definitely finding positive ways to be a person with a cleft. Sounds like the same for your friend. :)

April said...

Hi Aimee. Thank you so much for sharing this beautiful story! I was brought to tears at many moments. You described the circumstances, and your feelings throughout them, with such eloquence. I'm not a mom yet (my husband and I are in the process of adopting through foster care), and we have had to do quite a bit of research on birth defects, and special needs. I do hope you are able to find peace, and that you are relieved of any guilt about the possibility of this being from something you did. I don't believe that is the case. Makayla is such a beautiful little girl! Thank you for sharing your story.

Cindy Batchelor said...

What a wonderful story and thank you so much for sharing! It is truly inspiring!

Shashi Charles said...

Beautifully written story - I am so honored to have stuumbled on here through Blogelina. Your daughter is beautiful!

Jobi and Fisher said...

I think it is so wonderful you wrote your story. I can already see from these comments you have a lot of company and many new friends! I somehow think you feel a lot better for having gotten it all down on paper - well, not really paper, but you know what I mean. I am very excited for you and the path this will take on!

Rhonda Berlin said...

Thank you for being so open with your story. I was struck by the fact that you had a nurse who understood your challenge and was able to support you. It would seem to be that you are possibly sharing that same gift to someone else right now. Many blessings to you & your family.

Jean Wise said...

You are so brave to share your story. I know it will help others. As a nurse, I worked a short time at a children's hospital on the floor where we repaired these. One of the most rewarding aspects of the job was working with the ups and downs of the parents and helping them through this process. Blessings on your journey

Natasha Papousek said...

Thanks for sharing your incredible story. Makayla is blessed to have a brave and honest Mom who obviously loves her very much. All the best to you in this adventure!

momsabasketcase.blogspot.com said...

I know all too well the feelings of guilt; wondering if you did anything differently while you were pregnant, that they would be 'normal'. It really is a mourning process we go through as mothers...mourning the loss of the 'perfect' child. It's difficult for a lot of people to understand and though it never really goes away, it does ease after a time. I look forward to reading more of your journey.

Aimee Freeman said...

Thank you for reading. My heart clenched when I read your words. I can't imagine the experience you went through - I have had a few friends who have gone through it. I just an amazed by their strength and faith. And it reminds me how blessed I am for the healthy children in my life. And how we can't take one moment for granted.

You have an angel always watching down on you.

Aimee Freeman said...

Hi and thanks for commenting. Yes, I am so blessed to have gone through this here in America. Many children and parents are not as lucky to have the resources we have.

Aimee Freeman said...

Hi Kristin. I honestly always say...if this is the only thing my children ever have, then they are blessed and I am blessed. Having a cleft has been a struggle for Makayla in many ways. There are have been surgeries, recoveries, bullying and so on. But she is healthy and beautiful. I truly can't ask God for more than that.

What kind of cancer did your child have? Did everything turn out ok. I swear that is one of my biggest fears. I regularly donate to St. Jude's and I have read so much on childhood cancers. It's just heartbreaking what these kids go through - and amazing how strong they are.

Aimee Freeman said...

Hi Teresa. Thanks for commenting.

I am excited to share more of our story with you all :)

Aimee Freeman said...

Hi Cindy,

Thank you so much commenting!

Aimee Freeman said...

Thank you, Shashi!

Stacie Sayz So said...

Aw, what a sweet little pumpkin. Thanks for being vulnerable and sharing this. You have a beautiful daughter. Can't wait for part two!

Jane @ Devoted Sonriser said...

I haven't had any kids yet, but I hope to sometime soon--can't wait! :D I love how you refer to you and Makayla as a "team." Just beautiful. :)

Tamara Willis said...

I am sure your beautiful daughter will do just fine, sounds like you're both strong. Maybe your story will help others that may be going through the same thing or something similar.

Jennie Bryant said...

Thank you so much for sharing your story. I can't wait to read the second part. :]

Aimee Freeman said...

Hi and thanks for commenting. Yes, writing has always been very therapeutic for me :)

Aimee Freeman said...

Hi Rhonda. Thanks for commenting. I was definitely blessed to have a nurse who had gone through exactly what I was going through. I am amazed now how many people are unfamiliar with cleft lip and palette. That is a huge reason I am writing this series. Cleft lip is an extremely common birth defect - and people should know they are not alone on their journey.

Aimee Freeman said...

Hi Jean. Thank you so much for your sweet comment!

Aimee Freeman said...

Thank you, Natasha!

Aimee Freeman said...

You're right...it doesn't go away. I still wish sometimes that Makayla didn't have to go through all this. No matter what the scars are always there...literally and figuratively speaking. I hate that she ever feels different from other kids in any way. But she is truly one the strongest people I have ever met. She is wise beyond her years. And just a very nice and caring soul. I feel she is going to take on all the problems of the world some day...and she just might fix many of them. She really has that kind of spirit.

Aimee Freeman said...

Thanks, Stacie!

Aimee Freeman said...

Hi Jane. Thank you for comment! :)

Aimee Freeman said...

I hope it will, Tamra. Thanks for your comment :)

Aimee Freeman said...

Thanks, Jennie!

Charchar D. said...

Your baby is so beautiful! I had mine when I was 18. During the first month I admit that I too had a couple of beers, Jack Daniels, and all. Plus 3-5 cigarretes in my first month of pregnancy. I was in denial that time I learned I am pregnant. I can't accept that fact. I don't want to ruin my college studies. I don't know how to tell my parents. I even thought of going through an abortion because the biological father don't want to. I cried a lot, been depressed and all. But in the end, when I heard that first crying voice when she got out of my womb through CS. I was truly happy. She's fine.

This post is truly inspiring!

I had known relatives and friends who was also born with cleft lip and look at them now, they're doing all fine. Our country has also this project smile about children born with cleft lip and someday I want to celebrate my birthdays with these beautiful chilren.

You are a very strong woman! Your daughter is strong too. Go supergirls!!! I can wait for your part 2!

Love,
Charlotte Anne (http://charlotteanne.tk)

Jennifer Hughes said...

So many people don't understand that having a cleft lip is reconstructive surgery because it gets in the way of a child eating. It's not just about how a child may look. Thank you for talking about this (it often is not) and sharing your story.

Jennifer @ The Jenny Evolution
http://www.thejennyevolution.com

The Entwife said...

This is a very touching post. She looks like a sweet little one and I can understand how this might make you love her more. I hope she is doing well now.
Jennifer

Tiffany said...

I can relate to the feelings of guilt. My son has a language delay and I kept wondering what I could have done differently to prevent it. But now Ijust try to focus on getting him the help that he needs to move forward and loving him like crazy. The guilt hasn't completely subsided, but it's better.

Aimee Freeman said...

Hi April. Thank you so much for your comment. Your words really meant a lot to me.

And I I wish you all the luck in your adoption journey. I know that isn't an easy road - but it's a rewarding one once all is said and done.

Terra said...

I can really relate. I didn't have the perfect birth story either and when our son was born they took him away from us and after a bit decided to send him by ambulance to another hospital with a neonatal intensive care unit...and I couldn't be with him. Regardless of the challenges a child is born with, as a mother there's an intense urge to protect and care for him or her. It's any awful feeling to be separated even for a short while, isn't it?

Daou H. said...

Wondering story. I am not a father yet, but I really look to be one some day. You have shown us a side that we do not hear much about in our every day lives. Thank you for sharing, I look forward to hearing more about Part 2!

Carli Walker said...

Beautiful little girl you have! And such a touching story. Thank you for sharing. I feel like having that nurse there that went through the same thing must have been a blessing. I will be subscribing to hear part 2!

Jessica Ballard said...

Thanks for sharing your journey. No one has the perfect story, we all have our own journeys and we figure it out as we go. We all have LOVE and that is why your bond is so strong.

Val said...

Thank goodness for people like the nurse being put in your life at the right time. Right from the start you had a success story to hear :)

Molly Wagner said...

What a precious little girl you have! I seriously cried reading this. Your story, and especially the quote about your first night as a mother, beautiful. I love reading your story, your journey. It's never easy, that transition into parenthood. I'm glad that you had nurses there to help out, and I just know that everything will work out with your little girl, she's beautiful no matter what! Will be looking for part 2 of this story for sure.

flightsofdelight said...

Thank you for sharing your beautiful story. It must not have been easy, but what an encouragement to other mothers who may find themselves in a similar situation.

Lori said...

Wow - thank you for sharing such a personal story. A mother's love wins out so strongly against any "problems" our little ones have! This post has been and will minister to many others.

Karen Curtis said...

Thank you for being so open and candid. I am so glad that God sent that nurse at that moment to give you what you needed. You have a beautiful little girl! I can't wait to hear more about your journey!

-Karen
www.yourstylistkaren.com

Zan Turner said...

I so cannot continue to read this story...I got to the point where you talk about the nurse with the similar story talking to you, giving you resources, and showing you photos of her son. When I got to the part where you said your daughter could not breast freed....and all....then surgery...I could not read further to see the end of the story..My eyes are welling up with tears and I am sitting in my classroom...maybe I will read the rest when I am by myself to see the end...too emotional right now. Thanks for sharing.

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