Posts Filed Under Prematurity

Time Stand Still

posted by Momo Fali on December 29, 2008

At this moment, ten years ago today, I was lying in a hospital room with a monitor around my belly watching pitocin slowly drip into my vein. I had less than five contractions before the doctor made them stop. He then proceeded to tell me that I would be having my baby very soon. Literally. Ten weeks too soon, to be exact.

My firstborn was delivered weighing 2 lbs. 9 oz. and she lost two of those ounces in the first day of her life. Her legs were the diameter of a highlighter, her ears the size of a thumbnail. If you’ve seen a preemie as small as mine, you know that her skin was so thin you could see her veins, and some parts of her body hadn’t even developed yet.

The first time I saw my baby, she had a breathing tube down her throat, an IV in her belly button, and wires covering her tiny frame. She was so, so small and I was absolutely terrified.

But today, on her 10th birthday, she is happy and healthy. She overcame a whole lot of obstacles to get here, but you would never know that her father once held her entire body in one hand. Happy Birthday, sweet girl.

Now I’m faced with the knowledge that in three years I’ll have a teenager, and I find myself absolutely terrified all over again.

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That Sounds Like a Personal Problem

posted by Momo Fali on December 12, 2008

My six year old son has always suffered from a pretty nasty case of reflux. When he was an infant, this resulted in constant shifts in medication, a lot of crying by him and me, and more than our fair share of projectile vomiting.

During an endoscopy a few years ago, his gastroenterologist noted that the ring of muscles around his lower esophagus, which is supposed to keep his stomach contents in his stomach, didn’t function properly. Actually, not at all. His ring simply doesn’t contract when it should, allowing half-digested food to freely flow up from whence it came.

We refer to these moments as “yucky burps”. We’ve all had them, right? Those bile-flavored, liquid belches. Mmmmmm. Delicious!

At his last GI visit, his doctor suggested that he was old enough for us to try to wean him off some of his medications. Considering one of them costs $261.00 a month, we were all for it.

But, my boy doesn’t like to make things easy. When we discontinued the medicine, the yucky burps increased, and some of them weren’t just burps. He has been throwing up a lot too. Does anyone have $261.00 I could borrow?

Yesterday in school, he was goofing off with a straw in his mouth and it hit him in just the wrong spot. He gagged, and that gag brought up breakfast, snack, and my personal favorite, regurgitated milk.

His quick-thinking teacher, who is fully aware of the reflux situation, jumped in and cleaned up the mess, then told all the kids in the kindergarten class about my boy’s esophageal “flap”. She told them that their flaps stay closed and keep food where it should be, but that his flap doesn’t work and sometimes that means his food comes back up.

But I didn’t know the extent of her conversation. Which would explain why I was at a complete loss last night when my son exclaimed, “Mom! My flap hurts!”

He Gets an A+ in Art

posted by Momo Fali on December 4, 2008

My son has his annual appointment with his cardiologist this afternoon. Yesterday, when I told him we would be seeing his heart doctor he got a little nervous.

I reassured him, “There won’t be any needles. They’re just going to put some stickers on your belly (an EKG) and then they’ll put some goo on your chest and use a wand to take some pictures (an echocardiogram). It won’t hurt at all.”

Of course, because he’s a boy he then asked, “What kind of goo?”

“Well, it’s kind of like clear jelly, but it’s not sticky. You’ll be able to see your heart on TV and sometimes they add color and you can see your red and blue blood mixing because of the hole in your heart. It’s pretty cool, buddy.”

He asked, “My red blood mixes with my blue blood?”

“Yes, it does.”

He scrunched up his face and said, “Maybe that makes my blood purple.”

Giving Thanks for Good Doctors…and Beer

posted by Momo Fali on November 26, 2008

On the day before Thanksgiving, four years ago, I received a dreaded call from my son’s doctor. He had been very sick and a nurse phoned to give us the result of some blood tests.

My son had a strep pneumo infection. Not always a big deal, unless you’re a kid with heart defects like my boy. And, because my kid likes to be different, it wasn’t the strain for which you get immunized, it was an antibiotic-resistant version.

They gave us two options. A seven-day, no expenses paid trip to the hospital for IV antibiotics, or a $300.00 bottle of a new, oral medicine that had an 85% chance of working. Because hospital stays turn our lives upside down, and because it was the day before Thanksgiving, we decided to try the oral meds.

The only problem? No one warned us that the medicine tasted like wet steel. One drop of it on my son’s tongue made him gag and vomit, which really isn’t good when you’re trying to get life-saving medicine down his throat.

We tried diluting it in juice, we tried chasing one drop with an entire Reese’s Cup, but nothing worked. We knew a week in the hospital was imminent.

I called the pediatrician on Thanksgiving morning to let her know, and she agreed that we had no other choice.

But then she said, “Well, there is one other thing we could do…”

She went on to tell a very anxious me, that she would agree to put in a Heplock (the short hub that sticks out of an IV catheter and can be capped off). But alas, she didn’t have a nurse who could do something like that on Thanksgiving Day.

I nearly screamed, “I have a nurse!!”

My sister-in-law is a pediatric nurse at a local hospital and I knew she would do it.

So the pediatrician agreed to meet us at her office later that afternoon…after she fed 20 people dinner at her house.

Now tell me, how many doctors do you know who would make Thanksgiving dinner, then go and open their office for ONE patient, and let a strange nurse come in and do a procedure? Oh, that’s right. You don’t know ANY doctors who would do that.

And then, after my sister-in-law got the Heplock in, as if there was a shred of doubt that we’d keep that pediatrician forever…she went ahead and sealed the deal when she offered me a beer out of her office refrigerator.