Posts Filed Under Prematurity

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.

Echo

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.

Just For Today

posted by Momo Fali on August 21, 2013

When I define myself I don’t ever say I’m a mommy-blogger. I’m a mom, but I’m also a wife, daughter, niece, cousin, employee and a whole lot of other things which don’t, individually, make me who I am or this blog what it is. I’m more of a hodge-podge blogger. Look at that! I just created a niche!

But, today this little girl started high school and I am feeling 100% mommy.

FirstDayFirstGrade

First day of first grade.

You hear it all the time; enjoy it when they’re little, they grow up so fast, time flies, blink and they’re grown. I’m here to tell you that it’s all true. In four years – God willing – she’ll be off to college and I don’t how my heart will stand it.

1st day hs

First day of high school. I won’t even comment about the socks because that’s how they wear them these days. Kids!

So just for today, go ahead and call me a mommy-blogger. Just for today, I only want to talk about my daughter and how wonderful, smart, and funny she is, and how amazing it has been to watch her grow from the 2 lb. 9 oz. preemie who fit in her father’s hand.

Just for today, you can call me whatever you want as long as I get to be her mommy a little while longer.

When my son was young, he was very sick, not only because of his congenital heart disease, allergies, and kidney disorder, but with near-constant, chronic, bacterial infections. A bacterial infection is nothing to mess around with, but when you have a heart condition, you need to be extra careful. We faced what seemed like a never-ending battle against these bugs in order to keep his ticker, well, ticking.

He had strep many times. One case was so severe, and antibiotic resistant, that it nearly killed him. Have you ever heard of a mastoid infection? I hadn’t, until my son got one. It’s a bacterial infection in the bone behind the ear, which is not to be confused with adenitis, which made him look like he had swallowed a golf ball. Oh, and there was that UTI that he got before he was even one week old.

More than anything, though, my boy suffered from sinus infections. From October to May, his little head was crammed with crud and mucus so thick that he could barely breathe. We filled prescription after prescription of antibiotics to keep the bacteria from traveling to his heart. He spent, roughly, two out of his first nine years on Penicillin.

During this same time, when we were pumping him full of medicine, we tried natural remedies too. We even had the air quality tested in our house to see if there was mold hiding somewhere. I knew that all of the antibiotics were keeping him alive, but I also knew that they were killing the good bacteria right along with the bad, and I worried that someday they simply wouldn’t work anymore.

Then, on television one day I saw someone talking about neti pots. Something told me that this was what would help him. I had a talk with his pediatrician and she thought it was worth a try, though she suggested a sinus flush instead of a neti pot, something that would force the water up instead of just letting gravity have its way with his nasal passage.

I bought purified water and a sinus rinse kit, positioned my kid over the kitchen sink, and promptly made him vomit. We tried again the next day, and the next, and the day after that, until my son became a nasal irrigation pro! Now he can even tell me which side needs to “go first” in order to clear his sinuses quicker.

I would love to say that he hasn’t had to take any antibiotics since we started this all-natural solution, but I can say that he’s gone from needing medication about three months out of the year, to about two weeks. He rarely has sinus infections anymore, when he used to live with them perpetually.

He’s had three sets of tubes to help with ear infections, he had his tonsils removed to cut down on strep, and I’m happy to say that sinus infections are, mostly, a thing of the past. I’m glad I made him stick with it and keep trying. I’m pretty sure that’s exactly what we parents are supposed to do.

This post is part of BlogHer’s My ‘I’m a Mom’ Moment editorial series, made possible by Seventh Generation.

The Tooth Fairy Needs to Bring Me a Drink

posted by Momo Fali on February 19, 2013

Yesterday afternoon, my 10 year old son had six teeth pulled. Because my kid is special, this had to be done by the Chief of Dentistry at our local pediatric hospital. When I say, “special” I mean that my son has bigger medical bills than your son.

Thanks to anxiety, gagging, reflux and a heart condition, this meant general anesthesia for the eighth time. I have always said that watching him get wheeled away to surgery is the hardest part. I was wrong.

Yesterday, the hospital staff gave me the option of joining my son in the operating room until he was asleep. I had never done it before and I was one part happy to be there to comfort him and one part curious about what he has experienced many times while his dad and I have been down the hall drinking waiting room coffee.

I donned something akin to the bunny suit from A Christmas Story, only it was blue and didn’t have ears, and followed the gurney through the heavy OR doors. What happened next is something I will never forget. Hint: It wasn’t a Red Ryder BB Gun.

Once transferred to the operating table, my son began to shake and cry and FLAT OUT refused to breathe the laughing gas coming through his strawberry scented mask. I knew this wasn’t going to go down as planned and when the nurse told me to show him how easy it was, and whispered for me to pretend to breathe into the tube, I would be lying if I didn’t think about taking a gigantic whiff.

Instead I tried to calm my son as four people held him to the table and forced the mask to his face. I placed my head directly in front of his and held his hands tight as I kept repeating, “You’re okay. You’re doing a great job. Good boy.” Over and over and over, for the eternity it took to get him to sleep.

His eyes had fear in them that I hope no parent ever has to see in the eyes of their child and as he tried to yell, “Mommy!” from under the mask, my heart broke into a million pieces. I calmly continued, “It’s okay. I’m right here. You’re doing a great job.” It was like watching a death scene in a movie, only it was real life and I was letting these people suffocate my son.

In less than 30 seconds, his grip on my fingers loosened and they laid him back gently. I picked up the Matchbox car he had thrown across the room and found his glasses that I was sure would be crumpled and smashed, but were actually intact. Then I went to the other side of the OR doors and took off my bunny suit and promptly began crying. I didn’t stop until the doctor came to talk to us.

Today my boy is playing, eating Jell-o like it’s his business, and marveling that the Tooth Fairy left him $20 and let him keep his bag o’ teeth.

But mostly, he’s just getting annoyed at how often I keep grabbing him for extra tight hugs.