Tag Archives: infant

Confessions of a Cleft Palate Mama

As an active blogger and Social Media participant, I choose to live my life out loud. In choosing to live my life in this manner, I open myself and my life up for comments and questions. Sometimes, these comments and questions hurt. Sometimes they are meant to cut. Other times, they are not meant to hurt but are instead posed with the best of intentions. The latter often catch me off guard. Such a situation occurred this past week. Instead of dashing off a quick and angry response, I called a friend and nearly ended up in tears as I described the situation to him. I let it sit over night as I thought about the best way to respond. Then I took to Twitter to vent about the situation. Once I took to Twitter, I realized I was not alone in my very justified reaction to the inquiry. Instead of a private response, I choose to handle this in a public manner. There are many other mothers of children with birth defects in this world and all of us battle the same thing deep down inside. All of us are consumed by guilt.

The birth of my second daughter at 35 weeks and 5 days occurred 42 hours after my first contraction. I pushed twice and her screams filled the air of the delivery room instantly as she emerged into my nurse’s waiting arms. Placed on my chest, she continued to scream and writhe about as most newborns do. At first glance, she appeared healthy. All fingers, all toes, you know, the important stuff. When she screamed however, her mouth gaped at the top where her palate should have been. I blinked and tried to check but blamed it on exhaustion. I tried to latch her onto my breast to nurse but it didn’t work. After several tries, on and off, her screaming, me almost in tears, we requested the Lactation Consultant.

The Lactation consultant came in, slipped on gloves, and swiped our 30 minute old daughter’s mouth. “She’s got a cleft.” A swarm of activity buzzed about our room and suddenly there I was, alone, in bed, freshly delivered and still numb from the epidural. No one to talk to, no one to explain to me what was going on. The thoughts started. I knew of a cleft. I knew it meant something was missing. But I didn’t know the cause. I didn’t know why. Then I thought. I thought some more. What had I done wrong?

Early in my pregnancy, I was unable to take prenatal vitamins because they induced severe nausea. Forced to choose between taking the vitamins or not eating, I chose to not take the vitamins. I even tried taking them at night but it was a no go. My depression from the birth of our first daughter also played into the decision to not discuss this nausea at length with my OB. Nausea continued well into the 6th month of my pregnancies. By the 6th month, though, I still was not taking my prenatals. In my depression delusional mind, I even wondered if it would truly affect my growing child’s well-being.

At six months pregnant, however, even if I HAD taken my prenatals, it wouldn’t have mattered. Most clefts form between 4-6 weeks, well before a woman is even aware of her pregnancy. Many clefts are even impossible to link to a specific cause. Our daughter’s specific cleft, a bilateral complete cleft of both hard and soft palate (meaning essentially, she had NO PALATE whatsover), was associated with a condition called Pierre Robin Sequence (pronounced Pea-air Roh-ban). Her jaw was also recessed, her tiny tongue was floppy, and her airway was narrow. In the 1920′s, PRS babies had a slim chance of survival. Today, however, the rate of survival is very high and surgery is available to correct these issues.

I was asked, several times, by several doctors, if I had taken my prenatal vitamins. I lied. Yes, I know I shouldn’t have lied. I should have been honest. But between depression, PTSD, and the guilt now whirring around in my head, rational behaviour escaped me. My partner didn’t even know I hadn’t taken my prenatals until I confessed while in labor with our son. (Hell of a time to confess, huh?)

Bottom line: I BLAMED MYSELF FOR MY DAUGHTER’S CLEFT.

Yes, rationally I know now I am not to blame. There is no family history of cleft. No associated genetic syndrome along with her PRS. It formed well before I could have done anything about it and even Mothers who take folic acid religiously still have a risk of giving birth to a child with a cleft. I know clefts are nearly impossible to see on a standard u/s unless you are looking for them specifically. Intellectually, rationally, I know all of this. and yet, the guilt consumes me. She grew inside me. She grew imperfectly. Logically I am to blame. If she is imperfect, there is something wrong with me. I failed my daughter before she was even born. I failed at motherhood a second time before I even held her. I FAILED.

Mothers of children with birth defects, with special needs know what I am talking about. We feel this every day. We fight like hell to not let this guilt eat at us. We fight against stigma, misinformation, judgment, and ignorance. We live with the stares, with the internal guilt which threatens to rip us apart every second of the day. We ferociously fight for our children so they may have a chance to live a normal life. A life of which they are completely worthy.

My daughter is nearly 6 years old now. She is beautiful. She is intelligent. She is determined, obstinate, and full of perseverance. She is happy. She is thriving. She is PERFECT. She is LOVED.

It doesn’t matter what I did or didn’t do all those years ago. I cannot go back in time to change anything which happened. Even if I could, I would not want to go back in time to do so. Because if I did, I wouldn’t have a daughter who has taught me more than anyone else in my life about the importance of hanging in there, fighting for even the simplest things (like speech, breathing, and eating), or that the most important thing in life is to be happy and keep others laughing right along with you.

Don’t judge me

Last night, I asked my #PPDChat Mamas to chime in with suggestions for today’s chat. To the left is a suggestion I received this morning from Amber over at Beyond Postpartum. It got my wheels turning. Judgment, to me, is such a dirty dirty word. The following post is what spilled out as I thought more and more about her suggestion. Read. Share. Comment. Love one another, mamas. And daddies. Love. Don’t hate. Don’t judge. Love. It’s why we’re here.

Why do we judge one another, mamas?

Why?

Aren’t we all in this together?

Don’t we all have the same job when it comes down to it?

Do you know why that mama is giving a bottle?

Do you know why she’s chosen not to co-sleep?

Did you ask? Did you ask if she’s doing okay? Or did you glare? Did you judge? Did you sit on your throne and think better of yourself because you nurse your toddler, have your infant strapped to you 24/7, and only shop in the organic section of the grocery store never stepping foot in the formula or diaper aisle?

Shame on you. Shame on you for judging. For not stopping to ask if this mama is okay. If everything in her world is still right side up. Shame on you for tossing guilt onto her already full pile.

We are all parents. Most of us fight the same battles every day. A child who whines when it’s time to sleep. An infant who screams for hours on end because of digestive issues. A house in which laundry and dishes get laid and multiply more often than we do. We fight through this day in and day out through a fog of exhaustion. We make lifestyle choices based on what we can handle… based on what is best for our families.

Just because my infant isn’t super-glued to my boob doesn’t mean I’m less of a mother.

Just because my toddler stopped nursing before 2 doesn’t mean I love her any less. It doesn’t mean she loves me any less.

Two of my kids have had formula. I feared judgment. But I shouldn’t have been forced to worry about that. I fed my children. They thrived. I thrived. We all thrived. The end. The in between doesn’t matter.

My kids eat non-organic bananas too, by the way. And watch TV. Yes, they LOVE chocolate. And candy. And have eaten at McDonald’s.

I’ve ordered pizza because I didn’t want to cook. Popped open Chef Boyardee for the same reason.

Thank GOD.

Because frankly?

I’m not the kind of mom who can throw myself under the bus on purpose.

No, I’m the kind of mom who’s accidentally stepped in FRONT of the bus and been run over a couple of times.

There’s no full body cast for me but my brain’s a bit loopy still so excuse me if I’m not the Stepford parent I’m supposed to be at the moment. Excuse me if I look a bit more like Roseanne instead of June Cleaver. You see, I’ve been run over by Postpartum Mood Disorders and need to take care of myself in addition to my children because if I don’t, it can get fatal. Seriously. FATAL. As in I might lose my life FATAL. So excuse me while I indulge my child in some Enfamil and pop culture in order to maintain my sanity.

It’s OKAY.

My kids know they’re loved. They’re thriving. They’re using three and four syllable words by the time they hit three.

More importantly?

They already understand mental illness. They know it’s not anyone’s fault. That it just happens. And that it’s okay. Sure, right now they think tickling is an appropriate therapy (it really was in our house, by the way). My kids don’t jump to conclusions. They show compassion. They help. They offer support when someone is sad. They are empathic. They already know the importance of self-care. Our oldest is seven.

The next time you jump to conclusions about another parent in public, remember your children. They are watching you. They are learning from you. Before you even inhale sharply and bite that bottom lip because some mom whips out a bottle to feed her newborn, ask yourself why you’re judging. Ask yourself if it’s your place to judge. Instead of inhaling and glaring, go say hi. Ask that mom how she’s doing. Refrain from judging. Understand we’re all struggling on the same road but need different tools for our own journey.

If we could just show a bit more compassion to each other, the world would be a much better place. Don’t you want to be a part of that world? I know I do.

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@EllieAdorn shares: An email from inside PPD

The response to my post yesterday, “Seeking Guest Contributors,” has been absolutely astounding. So much love and generosity. Today’s post comes from Cristi Comes over at Motherhood Unadorned. You can find her on Twitter as @EllieAdorn. There are so many more guest posts to come – I can’t wait to share them with you!

Cristi Comes, Mom of 2, My 3rd Baby: EllieAdorn Mom Support Site focusing on often taboo issues such as mental health, postpartum mood disorders, suicide prevention, infertility, etc. and challenging parenting topics like breastfeeding and attachment parenting.”

Without further ado, here is the first part Christi’s post in her own words. You’ll have to go to her place to read the rest of it. Trust me, you want to read the rest of it.

Postpartum Depression (PPD) can happen to anyone, even someone like me who already has mental illness and is medicated and treated for depression. With my first child, I thought “I’m cool,” my meds will protect me from PPD, and I think for the most part they did. BUT I wasn’t so lucky when I had Ellie. Perhaps it was because I changed meds in between kids. Or maybe it was the stress of managing 2 children. I’m sure it was all of that and more.

I hate pregnancy, or more to the point I hate the way my body and brain feel during pregnancy. The aches, the pains, the anxiety. So having the baby is blissful relief to me. I get my body and stamina back. But the first few months with 2 kids was really really hard.

My son, who was just over 2, had been a completely attached child. Mommy and Daddy were his whole world and he was the center of the universe. Now the universe had two center points and one needed mommy 24/7 for breastfeeding and care. His jealousy was BAD. Our sweet little boy was acting out so terribly I was losing it. I felt like I was on the defense protecting Ellie every minute of every day…besides the typical lack of sleep and general stress of caring for a newborn.

PPD was creeping up and I didn’t even realize it. My husband had suspicions when I started talking about desperately needing to get a tattoo, like yesterday. I also decided I needed a hobby, and got to work finding one by buying up the fabric store and sketching a million clothing appliqué designs. And I don’t even own a seeing machine, much less know how to use one.

I finally hit a breaking point, and started to realize what was going on. I do have some experience in this are afterall. I’m surprised I didn’t see the signs sooner. I FINALLY wrote my husband the below email asking for help. Here is my voice from inside of PPD.

Head on over to Motherhood Unadorned to read the rest of this amazing post.

On the fifth day of Dismissmas: Five hours of sleep

On the fifth day of Dismissmas,

Postpartum sent to me

Five hours of sleep,

Four Just Snap out of Its,

Three perfect babies,

Two depressed parents,

And a wailing mess in a pear tree.

If she just gets some sleep, she’ll be fine. This will all go away. I’ll have my wife/sister/friend back. She’s just tired. Five hours should do it.

Yes, sleep helps alleviate some of the symptoms of a Postpartum Mood Disorder. But it’s only part of the recovery picture. The primary supports around mom should be focused on helping her rest, receive help from medical professionals, and regaining her sense of self with the added identity of mother.

If a new mother is struggling with a Postpartum Mood Disorder, she may need additional help beyond housework and infant or childcare assistance. She may need a team of medical professionals. If Mom is particularly fatigued, be sure to encourage her to get her Thyroid, Iron, and Vitamin D levels. Any discrepancies in these levels may cause some rest issues. Insomnia, exhaustion and extended sleeping, or sleeping yet not feeling rested are all symptoms which should not be ignored.

Rest when you can but if your sleep is not up to par with your normal pattern, (you know, beyond the whole infant every two or three hours thing), talk with a physician about how things are going. Lack of sleep can really throw anyone for an emotional loop!

On the Third day of Dismissmass: Three Healthy Babies

On the third day of Dismissmas,

Postpartum sent to me

Three perfect babies

Two depressed parents,

And a wailing mess in a pear tree.

 

How many of you have heard (or thought) this zinger: “But the baby’s perfectly healthy. Why on earth are you sad?”

As a mother of two children who were born perfectly healthy and one who was born with a cleft palate and needed major surgery at just 9 days old to help her breathe and eat, I know what it is like to be on both sides that statement.

Yes, having a child with additional needs is hard. But just because baby is perfectly healthy does not mean that Mama is going to be happy after giving birth. There are a whole host of reasons for mom not to be happy. Thyroid, Anemia, Vitamin D deficiency, history of personal or family psychiatric illness, perceived trauma during the childbirth experience, hormones that are now all out of whack and not shifting back into place properly, financial stress, moving, life decisions, etc.

Those who say things like “Baby’s healthy. You shouldn’t be sad” have never been depressed after the birth of a child. It happens. It’s real. And it is absolutely not yours OR the baby’s fault.

The next time someone says that to you – respond with this: “You’re healthy too. Why aren’t you helping me get healthy too?”

Then snap a picture. Trust me. It’ll be a Kodak moment for sure.

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