Tag Archives: march of Dimes

On being a preemie mama

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I’ve never felt like the mother of a preemie.

Our second daughter was born just 5 weeks earlier than her expected arrival. Well, 5 weeks and a few days.

She was healthy. For the most part.

Sure, her palate was missing. All of it. Soft and hard. Both sides.

But she was healthy. Breathing. Not in immediate danger of losing her grip on her new life.

We had feeding challenges. Her O2 sats were monitored constantly.

Diagnosed with Pierre Robin Sequence, she underwent two surgeries in the first 21 days of her life. One major, the other to place a PEG feeding tube so she could go home.

We decided on a PEG feeding tube because to take her home with an NG tube (a feeding tube which goes in through the nose) would be impossible. If it came out, two people were required to replace it. At the time, her father worked as a restaurant manager. We had a toddler. Two dogs. I pumped exclusively. A PEG was infinitely easier.

At least I thought a PEG would be easier. The first night home, I slept in her room. The Kangaroo pump kept alarming. I didn’t sleep well. She didn’t eat well. We were both very grumpy. But eventually we got the hang of it and I became an expert at everything she needed. I once wrote up instructions for my former in-laws on her care. JUST the pump. Two entire pages. To write up her care for a full day would have been nothing short of a novel, I’m sure.

I remember those days. Blurry as they were, I remember them. Pumping. Setting up her feed. Cleaning pump supplies. Chocolate. Cuddling with my toddler. Waiting for the pump to beep. Stopping the beep. Pumping. Glaring at the dogs because NOW they need to go out. Taking them out. Setting up her feed. Cleaning pump supplies. Chocolate. Cuddling with my toddler. Waiting for the pump to beep. Stopping the beep. Pumping… you get the idea.

But not once did I feel as if I fit in at a preemie community. Most preemie moms I ran into had babies born at 27 weeks or earlier. With SERIOUS health problems. I didn’t belong. So I didn’t use them for support.

Shame on me.

Our reason for being a preemie mama may be different. Our babies may face different health challenges. But we? We ALL face the same fears. The same frustration. The same thoughts of “This? IS NOT WHAT I SIGNED UP FOR but I’m doing it anyway.”

I remember breaking down in the dining room one night. I wanted to never go back to the hospital. I wanted to leave her there. I was DONE.

But the next morning? I got up and went. Because that was my baby girl. And nothing would keep me from her.

One morning I even sprained my ankle just getting up from pumping. Know what I did? Wrapped it up. Packed a ton of Tylenol and Ibuprofen. Told her father that if things got really bad, there was a “grown up hospital across the street.”

Preemie mamas are by far the toughest damn women on the planet. Before becoming one, I never knew if I could do it. But I did. And I’m stronger for it. So are you. You may not feel as if you can relate to another preemie mama but I promise you, she is feeling exactly like you. She is scared. She is riddled with anxiety. But she’s doing it anyway. So are you. Reach out. Talk. Be a companion. Don’t ever go it alone.

An Exercise Program Selling Point: Not losing baby weight leads to Postpartum Depression

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I happened across a website for a Mom and Baby fitness routine yesterday. As I scrolled down the page, I got angry. And then I got pissed off.

Here’s one of their selling points from about 2/3 of the way down the page:

If you need help getting back in shape after baby, if you have postpartum depresssion, if you need creative ways to bond with baby, if you need to lose the baby weight —

Okay, so yes, exercise helps with Postpartum Depression. In fact, some studies have proven that exercise has an almost anti-depressant effect.

But do you need THEIR product to achieve that effect? No. All you need is yourself, some clothes, decent shoes, and somewhere to walk or run. Bam.

What got me really pissed off was the sidebar section. I took a screen-shot of the most offensive section to share with you. I have blacked out the company’s name as I sure as hell am not advertising for them. You also will not find a link to them here either.

Clearly, these folks know something about Postpartum Mood Disorders I have never heard:

“Gaining pregnancy weight and struggling to get back in shape after birth can lead to post pardum depression and difficulties bonding with baby.”

First of all, you are SUPPOSED to gain weight during pregnancy. Here’s a breakdown of weight gain expectations as found at the March of Dimes website:

If you began pregnancy at a healthy weight
You should gain 25–35 pounds over the nine months. Assuming you gain between 1 and about 4 ½ pounds in the first trimester, you should put on about one pound every week in the second and third trimesters

If you began pregnancy underweight
You should probably gain a little more than women who are at a healthy weight. That’s because underweight women are more likely to have small babies. A 28- to 40-pound gain is usually best. Assuming you gain between 1 and about 4 ½ pounds in the first trimester, try to gain slightly over a pound a week in the second and third trimesters.

If you began pregnancy overweight
You should gain only 15–25 pounds over the nine months. Assuming you gain between 1 and about 4 ½ pounds in the first trimester, you should put on slightly over ½ pound every week in the second and third trimesters. While you don’t want to gain too much weight, you should never try to lose weight during pregnancy because that could harm your baby.

If you were obese at the start of your pregnancy
You should gain only 11–20 pounds over the nine months. Assuming you gain between 1 and about 4 ½ pounds in the first trimester, aim for gaining slightly under ½ pound every week in the second and third trimesters.

If you’re expecting twins
You should probably gain between 37-54 pounds over the nine months if you began pregnancy at a healthy weight. If you began pregnancy overweight, aim for gaining a total of 31-50 pounds. If you were obese at the start of your pregnancy, you should gain between 25-42 pounds over the nine months. (That means gaining about 1 ½ pounds a week in the last two trimesters.

Another important thing to note here is that if you have a history of eating disorders, you are at a higher risk for developing a Postpartum Mood Disorder.

It’s also important to know that Thyroid issues may also be at the heart of abnormal weight loss or weight gain.

That population is exactly who this spam page is targeting. Get thin. Be happy. Avoid Postpartum Depression. Stay perfect.

Want to know something interesting?

This company has a spammy blog to go along with their website. Postpartum Depression is nowhere to be found when a quick search was done for the term at their blog.

For this company, Postpartum Depression is merely an SEO term they tossed onto their page in order to garner more hits and target an entire at-risk population.

Companies like this make me absolutely sick.

They pray on women who are at their most vulnerable. Granted, this particular company’s product is not insanely priced, but price is not the issue here. The issue is that they are insinuating that their product, not exercise in general, will help you fight off depression. You NEED their product to avoid Postpartum Depression and bond with your baby. Truth be told? You don’t.

Here are the things you may need to battle Postpartum Depression:

  • Professional support
  • Personal/peer support
  • Family support
  • Exercise (any kind will do)
  • Therapy/medication/supplements – IF prescribed and or/approved by your Professional support

Things you do NOT need to battle Postpartum Depression:

  • Products which promise to cure or ward off Postpartum Depression
  • Negative People/Support
  • Sparkly Unicorns (although they are awesome)
  • Leprachauns
  • Wizards
  • The Trix Bunny

Depression happens. There’s a right way to go about getting help and a wrong way. Ending up on a page like the one I have just blogged abut is the wrong way. Unfortunately, many, many people prey on at-risk populations so that they will spend money they don’t have on products they do not need. So how do you tell the difference between a good, solid, and helpful website vs. a bad, for profit, grubby website? Educate yourself starting with these two posts:

The reprehensible spammification of PPD

Tips on Identifying Reliable Health Information on the Internet

Then make sure to involve a medical professional in your Postpartum Mood Disorder care to help keep you safe and well as you travel toward recovery.

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Prematurity Awareness Day: Remembering to Breathe

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[youtube=http://www.youtube.com/watch?v=jPz3YaIJkjQ&fs=1&hl=en_US&rel=0]

“2 AM and she calls me ’cause I’m still awake”

~Anna Nalick, Breathe~

I couldn’t sleep. It was time to pump again. If I did not pump, I stood to lose the precious supply of breastmilk I struggled to establish. Every three hours I hooked myself up to a yellow hospital grade Medela pump. The plastic horns were cold. Hard. Definitely not the warm natural manner in which I expected to be providing milk to my new baby girl. Never-mind she was in Atlanta about an hour away.

I sat on the couch, in the dark, hooked up to a whirring machine via tubes. 70+ miles away, my daughter was doing the same thing, hooked up to machines, whirring and straining to keep her alive.

‘Cause you can’t jump the track, we’re like cars on a cable
And life’s like an hourglass, glued to the table
No one can find the rewind button, girl.
So cradle your head in your hands
And breathe… just breathe,
Oh breathe, just breathe

~Anna Nalick, Breathe~

She was a little over 4 weeks early, my second daughter. A late-term preemie but a preemie none the less.

We had no idea she had a cleft palate. Or a recessed jaw. Or a compromised airway. Or a floppy tongue.

No idea she would be in an ambulance less than 24 hours after birth heading toward a NICU in the nearest large city.

No idea we were about to get a crash course in medically fragile infant care.

No idea of the plan to take our lives and turn everything completely upside down.

The plan was to have a baby. Go to the hospital, give birth to a healthy baby, nurse, go home.

Our plan failed. I failed. I wailed. I cleaned. I screamed. I cried. I wanted to leave her at the hospital. She was not mine. The hospital had made a mistake. They could keep her. I could not do this. I couldn’t. I just… I…. I was delusional. In shock. Processing but yet…. not.

Detached. Clinging to a series of routines. Clean, brush, wash, change, pump, meds, yell, scream, argue, repeat.

Stuck at home.

What I wouldn’t have given to have had her stay inside for a few more weeks.

To have known before we had her of the issues we would face.

But we did not.

I do not know if knowing would have changed a damn thing. I think it would have sometimes. But then I realize I cannot change what has been. Only what will be.

There’s a light at each end of this tunnel,
You shout ’cause you’re just as far in as you’ll ever be out
And these mistakes you’ve made, you’ll just make them again
If you only try turning around.

~Anna Nalick, Breathe~

The day we were to learn how to place an NG tube, I sprained my ankle as I got up from pumping on the couch. My husband freaked out along with me. Then I instructed him to bring me an ankle brace and ace bandage, bag up some ibuprofen and tylenol, and grab an ice pack. There was a grown up hospital across from Children’s. If things got worse, I would go, I promised. I never went. The nurses asked why I was limping. When I told them, they chided me. I did not care. I had limped around since arrival. 42 hours of labor wracked my body. I had the shakes, fever, signs of trauma. I kept going. I burned and re-tore. I should have slowed down. Rested. But I could not. My daughter needed me so I threw myself gleefully under the bus, a Cindy Crawford Pepsi ad smile glued to my face.

Why?

Because this is what a Mother does. Right? Right?

Everyone told us just get through the first year. The first year is the worst.

What they didn’t mention was the follow up appointments. The speech therapy. The potential for behavioral disorders. Allergies. Orthodontia. Additional surgeries. Ear Tubes. Feeding Tubes. Depression. Developmental delays. Hell.

They also did not mention the joy we would feel when our daughter, at four years old, finally blew out candles on her birthday cake all by herself. I cried.

Or the joy when she finally started talking and could TELL us in her voice instead of with her hands how much she loved us.

Or how much joy would spread across her face as she blew up a balloon after surgery #6 which created a pharyngeal flap to close off excess nasal emission of air previously preventing her from blowing up a balloon.

Or her giggles when she first blew bubbles.

Or how big we would grin as we listened to her teach her 2 year old brother talk.

How good it would feel to as she finally made progress.

How good it would feel to understand 80-95% of her speech instead of 25-50% of her speech.

How good it felt as we both recovered from depression and felt the sun’s warmth on our faces and in our hearts.

How grateful we would eventually be to God for carrying us through such a huge storm.

2 AM and I’m still awake, writing a song
If I get it all down on paper, it’s no longer inside of me,
Threatening the life it belongs to
And I feel like I’m naked in front of the crowd
Cause these words are my diary, screaming out loud
And I know that you’ll use them, however you want to

~Anna Nalick, Breathe~

When I became pregnant with her brother, I began to blog here. Not so much for others at first, but for me. I needed the support. I needed to vent. I needed to know I was not alone. Writing became a solace for me.

I know I am not alone.

You are not alone.

We are together.

There are thousands of us scattered across the world, just as scared as the next one. But we are not alone. We are not alone.

But you can’t jump the track, we’re like cars on a cable,
And life’s like an hourglass, glued to the table
No one can find the rewind button now
Sing it if you understand.
and breathe, just breathe
woah breathe, just breathe,
Oh breathe, just breathe,
Oh breathe, just breathe.

~Anna Nalick, Breathe~

Today I breathe. In. Out. Just as before.

But everything around me, in me,  has changed.

I have changed. For the better, I think.

Today I am stronger. I am braver. I am not stuck in that moment. I move forward. Not because I have to but because I want to do so. Because I choose to do so.

I am far from perfect. Far from June Cleaver.

I am me. Unapologetically me and unapologetically me as a mom. I do not worry about what I am doing right or wrong according to others. I don’t worry about what she says or she says or she says. What she says does not matter. All that matters is if my daughter has laughed with me today. Has she felt loved? Has she been hugged? Is she warm? Clothed? Fed?

Our house is a wreck. My kids watch TV. My kids eat junk food occasionally. I do too. We are imperfectly perfectly us.

And for that?

I am grateful.

So I breathe. I exhale. I move forward as an empowered unapologetically me.

The day I gave birth to my daughter four and a half weeks early was the same day I gave birth to a stronger me.

It just took me nearly five years to really figure that part out.

(This post is part of the March of Dimes Blogger’s Unite to Fight for Preemies event. You can learn more about Prematurity Awareness at the March of Dimes website.)

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My Premature Gift

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Today, November 17th, is National Premature Birth Awareness Day.

Hello, my name is Lauren. I am the mother of a prematurely born child.

(Hello, Lauren – that’s your line. C’mon – all together now. Hello, Lauren!)

Our second daughter was born three and a half weeks early after 42 grueling hours of labor. I was not on medication during my pregnancy with her. 30 minutes after birth, the lactation consultant discovered she had a cleft palate. Within 24 hours, she was an hour away at a Children’s Hospital in the NICU while I recovered for another 48. Within 9 days, she had her first major surgery. Within 21 days, she had undergone two more surgical procedures. The first five months of her life saw a grand total of six surgeries. Since then she’s had two more. Our daughter will be four in March and has already had eight surgical procedures.

She drank from a special bottle when she was not being tube fed. I pumped exclusively for seven grueling months stopping only because my mental health depended on me making a very difficult decision. While she does not struggle with basic needs as much as she did, it still takes her longer than usual to chew because her bite is lopsided. You see, her teeth only meet when she grits them together at one pivotal side – the right side. Her speech is garbled. I can only understand 50 – 75% of my own daughter’s speech. (Ok, cue the tears) Do you hear what I am saying? Out of everything my daughter excitedly tries to share with me, I miss up to half of it most of the time.

This past spring she had additional surgery to fix her pharyngeal flap. This flap closes off the airway between her nose and throat. Speech ordered the surgery to help with her nasal emissions. It’s helped some but it’s still an uphill battle given her poorly aligned jaw and all the air it allows through when she attempts certain sounds. And she’s trained her vocal chords to compensate for the lack of a pharyngeal flap. But you know what? She can say “s” now. Perfectly. I can tell it apart from an “F.” And she can blow up a balloon, blow bubbles, and clearly say “Please Push me mommy!” Most importantly, she can now clearly tell me I am STILL her best friend.

While in the NICU she underwent genetic testing to locate a potential cause or additional factors for her isolated bilateral complete soft and hard palate (that means there was NO palate up there on either side, hard or soft. Hard is when you put your tongue straight up. Soft is when you slide it back towards your throat.) But there was no additional genetic reason. She was diagnosed with isolated Pierre Robin Sequence. This more often than not occurs in boys, not girls. We hit the jackpot.

Despite all of her hardships, all of her struggles, all of the things she will face as she grows and has to overcome new challenges and issues, Charlotte is one of the happiest people I have ever met. Her goal in life? To make us smile and laugh. All the time. For real (to steal a phrase from her).

I went through hell with her. Emotionally, physically, every kind of -ally you can think of. I was there. Gripped on for dear life. Looking back, I know I was depressed during my pregnancy with her. Weighed down with an unresolved postpartum depression from my first pregnancy. Cleft defects often happen within the first 6-8 weeks of pregnancy. Before I even knew I was pregnant our angel was already awaiting us with a huge surprise all her own.

Where am I going with all of this?

I’m filling you in on how hard it is to be a NICU parent of a premature baby. What kind of challenges we face. How it doesn’t all end when we step out of the sterile nursery where our children spent their first days, months, or possibly year. We worry when things come up – anything – about it being related to something that happened at birth – is this because of such and such? She’s got a cold. How will this affect her airway? Should I let her sleep on her back if she’s so congested? What if she stops breathing? And so the monster is fed.

But on the flip side I am truly amazed at how often I manage to deny the monster his food. How often I am able to keep a cool head and maneuver my way around the big issues. I remember time B.C. (Before Charlotte). I would watch shows filled with parents of special needs kids. Amazed I would wonder where on earth they found the emotional stamina to wake up in the morning and face another day knowing the challenges that lay in store. But they did and I do. I look forward to her giggles. I look forward to her playful eyes, her hugs, her kisses, her tantrums, her excited babbling when her bus is about to arrive. And sometimes I want to cry. But mostly I want to rejoice. God has gifted me a perfect Angel and one day, in HIS time, I will understand her perfectly.