Posts Filed Under Prematurity


posted by Momo Fali on December 29, 2014

“Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body.” – Elizabeth Stone

That Elizabeth Stone was a smart cookie.

How else can you describe the feeling of creating and carrying a child; protecting and nurturing her before she can even breathe on her own, then slowly, over the course of time, allow her to become her own being? She is a part of you. Yet, not at all.

There are times when it seems she won’t ever be self-sufficient, like when she was a tiny preemie who didn’t grasp the concept of eating and breathing at the same time.

Or, the 13 months of rocking her to sleep for every nap and bed time. At the time, all you think about is how much you want her to slumber without assistance. Sixteen years later, all you think about is what you wouldn’t do to have the chance to hold her in your arms like that again.


Now there are moments when you feel like she is soaring to terrifying heights as you stand with your feet firmly planted on the ground, doing your best to stand beneath her in case she falls, but knowing there won’t always be soft landings.

There are still so many milestones to hit, but gone are the days of walking and talking. Now, you see things looming like a driver’s license and graduations. There will be firsts; a car, an apartment and probably, most unfortunately, heartbreak.

There will be triumphs and mistakes and though they will affect you more than any you have ever experienced, they will not be your own. Your heart will beat, but you can not contain it.

This is what it’s like to see your child turn sixteen. Unbelievable pride and love combined with disbelief at the swift passage of time. It’s happiness and excitement for the future and an aching and longing for the past.

But, more than anything, it’s pure joy in seeing a kind, funny, smart, beautiful soul come into her own. It’s years of your life which have exceeded all expectations. She has exceeded all expectations. And, now she’s sixteen.


Happy birthday, Goose. I love you.

A First Time for Everything

posted by Momo Fali on October 21, 2014

This post was inspired by Netflix. Come see what we’re watching.

My kids, both born premature, started their life journeys by consistently missing milestones. Crawling, walking, talking (though, I can attest they have both caught up markedly in that regard), running, jumping – pretty much every chart in their baby books was left untouched until months after a child would typically have it filled.

Needless to say, these breakthroughs have been a huge deal around here. A daughter who didn’t crawl until her first birthday or a son who didn’t speak until he was nearly four years old was cause for long-awaited celebration. They weren’t (and in some cases, still aren’t) just milestones; they are rather enormous landmarks. I’ve been tempted to erect monuments.

Now that they’re 12 and 15, the milestones are less about their existence and more about fun. For instance, my son was recently able to join us on the 93 mph Millennium Force roller coaster at Cedar Point. His next goal is to be tall enough to ride Top Thrill Dragster which goes 120 mph and launches you 420 feet in the air. Don’t judge me because I verified with his cardiologist, TWICE, that it was okay for him to ride them. They are  intense, but we love them and when he was finally 48″ at age 12, he loved some of the big coasters too.

With Halloween on the horizon, we’ve started enjoying the experience of watching scary movies with our daughter. Poltergeist didn’t faze her. Probably because she only knows Craig T. Nelson from “Parenthood” and she doesn’t have any concept of The National Anthem playing on the television at 1:30am, then going static for the  night. *shudder* The TV always had to be turned off before the static started! Always!

Of course, the milestone I’m most looking forward to is when my daughter will do the dishes without being told, or when my son learns to keep the shower curtain liner inside the bathtub. Those moments will be GREAT! Some I’m less than thrilled about, like my daughter going off to college. Gulp. That one is going to be rough. Like sandpaper on a rug-burn rough.

One thing is for certain, these are the things that make memories. You don’t remember the fifth time your kid rode a bike, but you’ll never forget the first.

Lessons from DVT – Call Your Doctor

posted by Momo Fali on May 30, 2014

I’ve thought about this post for a week. It’s one part health story, one part important lesson, and one part me bragging about being in touch with my body. I honestly don’t know where to start without sounding pompous. There’s a chance, though, that it could save someone’s life. So obviously, in addition to sounding somewhat arrogant, there will also be overly dramatic statements.

Fifteen years ago, I saved my daughter’s life. I was five months pregnant and wasn’t far enough along to be concerned with fetal movement, but when I noticed her kicking had decreased over a two-week period, I told my doctor. I stressed the change. I told her I felt like it wasn’t right. I told her there was a big difference in what I had felt to what I was feeling. She wasn’t worried, but scheduled an ultrasound. Four weeks after I first noticed a change, I had the ultrasound and my daughter was born via emergency c-section shortly after. The doctor told us that if we had waited just a week or two more, she would have been stillborn.


If she wasn’t around, who would harass him?

Fast forward to three months ago. I started taking hormones to control post-surgical pain on my girly parts. Okay, I’ll say it. My uterus. One of the side effects of the medication is blood clots, but I discussed it with my doctor and because I don’t smoke, the risk was low. Two weeks ago, delightfully pain-free, I flew to Miami for work. The day after I arrived I developed severe calf pain. Did you know that flying can case blood clots? It can.

I chalked it up to my new shoes, took some Ibuprofen and dealt with the pain off and on for the next week. I felt the aching at odd times (sometimes when standing, sometimes when in bed) and that’s what made me call my doctor. I wasn’t doing anything to trigger it. I gave it a week, so I knew it wasn’t my shoes. There was no redness, no swelling, the pain wasn’t bad and went away with a couple of Ibuprofen, but it just felt odd to me. Something wasn’t right.

I ended up in the ER a couple of hours after seeing my doctor and started taking blood thinners for Deep Vein Thrombosis the next day. If you have the good fortune of not knowing how dangerous DVT can be, let me just tell you that it can kill you. The blood clot can break off and go to your lungs and you have virtually no chance at surviving.

Needless to say, I’m no longer taking those hormones. I am, however, taking a blood thinner for the next 90 days. I can’t do my beloved workouts; at least not at the level I was. I am limited to upper body strength training, nothing too strenuous and working my calf is forbidden. My uterine pain is back with a vengeance and I can’t have a hysterectomy until I’m off the blood thinners. Catch 22, anyone? Oh, and I CAN’T DRINK ALL SUMMER LONG. But, I’m alive and so very thankful.

Long story, long – KNOW your body. If something doesn’t feel right, get it checked out. Trust me, I know going to the doctor is inconvenient and there is a really good chance that it’s nothing, but there’s also a chance that it isn’t.

Don’t chalk it up to new shoes. Call your doctor. Your body will thank you for it.

Reality Check

posted by Momo Fali on January 16, 2014

Today was our annual reality check.

Before autism, eye surgeries, infections and hospitalizations; before kidney problems, hearing aids, choking and vomiting; before speech, occupational, physical and behavioral therapy. Before it all, there was his heart.

I was six months pregnant when he got his first echocardiogram. I waddled down the halls of our local Children’s Hospital, then laid upon a table while a doctor looked at the right ventricle of his heart. It couldn’t have been much bigger than a peanut. I was decidedly bigger than one.

When his rare heart condition worsened two months later, they took him from my belly and whisked him away to that same Children’s Hospital in an ambulance while I, again, laid upon a table. This time I was miles away and I didn’t get to see him until two days later when they let me leave the hospital for a few hours. It was Mother’s Day. It was fitting, but gut-wrenching.

They told us he would be sedated until he reached five pounds and then he would need open heart surgery. They were wrong. He came home three weeks later without that surgery. Almost 12 years later, though, it’s still looming over our heads.

So each year we trek back to those same halls and now it’s my boy who climbs onto the table. We are all stronger than we once were. He is 52 pounds of unstoppable energy. We are not. But, when we spy parents wearing “CARDIOLOGY” badges we smile, nod, and give each other mental fist bumps.


He still needs open heart surgery at some point, but we’re waiting. Stalling, if you will. Hoping, praying, and prodding the doctors to improve their technology so they won’t have to cut his chest open, spread his ribs apart and cut into his heart with a knife.

He had a heart catheterization when he was 13 months old and it was one of the easier surgeries he’s had. This is what we hope for. This is why we’re glad he’s small and grows slowly, so that his heart can keep up and each year that passes we know the doctors get closer to fixing this in a less invasive way. Today I chanted, “We want a heart cath! We want a heart cath!” If only my cheerleading could be enough to make it happen.

For today, though, he is stable and that’s really all we can ask for. That, and one more year until we have to walk those halls again.