Ten Fingers, Ten Toes, and a Congenital Defect. (Part One)

Ten Fingers, Ten Toes, and a Congenital Defect. (Part One)

Ten little fingers1 in every 33 babies is born with a birth defect.

Every 4 1/2 minutes, a baby is born with a birth defect.

From March of Dimes…

“If your baby is born with a birth defect or other health condition, he may need special care at birth and later in life.

You may be worried and have lots of questions. It’s OK to feel this way.

Birth defects are health conditions that are present at birth. They change the shape or function of one or more parts of the body. Birth defects can cause problems in overall health, how the body develops or how the body works”

DEFECT is such an ugly word: a shortcoming, an imperfection, a deficiency.

A congenital disorder.

In other words, NOT perfect.

I failed as a mom, even before my baby was born.

Or at least that’s how I felt when I discovered that my son suffered from a Meckel’s diverticulum.

I didn’t learn this when I was pregnant during a regular office visit or ultrasound; he was thirty-three years-old and being rolled into emergency surgery all the way across the country when the surgeon revealed the reason why my son was writhing in such horrific pain that morphine couldn’t dull and why his belly was distended.

At first they thought it was appendicitis, but it wasn’t.

It was far worse and if we had not had such an amazing surgeon; there’s a strong possibility that he would not be here now, having his own baby boy.

Apparently he had been born with Meckel’s diverticulum, a true congenital diverticulum, which is a slight bulge in the small intestine present at birth and a vestigial remnant of the omphalomesenteric duct (also called the vitelline duct or yolk stalk).

Meckel’s diverticulum is the most common congenital abnormality of the small intestine; it is caused by an incomplete obliteration of the vitelline duct (ie, omphalomesenteric duct). Although originally described by Fabricius Hildanus in 1598, it is named after Johann Friedrich Meckel, who established its embryonic origin in 1809.

In 1981, there was nothing like the sort of sophisticated diagnostic tools we have today. I think I had a doppler to hear the heartbeat and that’s it. There was no need to subject me or my baby to amniocentesis and I was all about natural and organic, so the less invasive, the better.

Even now, despite being one of the most common congenital anomalies of the gastrointestinal tract, Meckel diverticulum has rarely been diagnosed in utero, although there is the potential to see it if it exists at the end of the third trimester.

What I learned from the doctors is that it either causes no problem at all or it causes a problem when the child is about two years old, or it causes the kind of complications my son endured as an adult, which can be life threatening.

Which it was.

If this condition is left untreated, it leads to strangulation and ischemic necrosis of the wall of the bowel loop.

  • Most patients with intestinal obstruction present with abdominal pain, bilious vomiting, abdominal tenderness, distention, and hyperactive bowel sounds upon examination.
  • Patients may develop a palpable abdominal mass.

From the moment my DIL brought my son to the emergency room and called us at 3 a.m.,  the whirlwind that brought me and tugboat man rushing from SoCal to the east coast — his intestines were dying and had become so necrotic that two feet (24 inches!) of small intestine would be resected, along with the removal of the inflamed and burst Meckel’s diverticulum, his appendix, eight inches of ascending colon, and various other bits and pieces that were also affected and infected.

I can’t even describe the fear and guilt that washed over me in waves while I didn’t leave his side for the two weeks he was in the hospital.

Why didn’t I know?

What could I have done to have prevented it?

How could I be such a horrible mother?

How come my baby wasn’t perfect?

What if…he didn’t survive?

I know those are the kind of irrational thoughts that have no basis in reality, but a mother’s heart is so fierce, I would have died for him.

And with him.

I’m so grateful to the surgeon and the great nursing care at Rhode Island Hospital; because of them, my Angel Boy is here today.

Here’s the complete story of that almost tragedy on my other blog, Enchanted Seashells, Confessions of a Tugboat Captain’s Wife:

POSTS ABOUT THE SURGERY:

1. That Dreaded Call at 3:00 A.M.

https://enchantedseashells.com/2014/05/01/that-dreaded-call-at-300-a-m/

2. Time To Exhale
https://enchantedseashells.com/2014/05/06/time-to-exhale-hospital-update/

3. Full Circle From Hell to Happiness
https://enchantedseashells.com/2014/05/10/full-circle-from-hell-to-happiness/

4. What Does a Cosmo, the Trauma, Unit, and Mother’s Day Have in Common
https://enchantedseashells.com/2014/05/11/what-does-a-cosmo-the-trauma-unit-and-mothers-day-have-in-common/

Lentil Cookies v2

My son-2Even though TECHNICALLY I’m defined as an “empty nester” because my son is on his own, married, and no longer resides at Casa de Enchanted Seashells, I don’t believe he’s ever further away than my heart.

I woke up on Saturday to read this email from my Angel Boy, which is the reason why I baked cookies early this morning and sent a package off to him while they were still warm:

angelboyemail

Not ALL is perpetually enchanted in the life of Princess Rosebud; It’s still difficult to think about or talk about my son’s recent emergency life-saving surgery  — I can’t even GO there to that place of “what if” — BUT the worst diid NOT occur and he’s making a full recovery.

Briefly, here’s what happened.

He had an obstruction due to a congenital defect we never knew he had, Meckel’s diverticulum. During his surgery, 24 inches of small intestines were removed because they were necrotic, along with 8 inches of ascending colon, his appendix, and lots of other small valves and little parts.

It all came about with no warning. Crazy, right?

Here’s that “if” again. IF my DIL had not fought the ER and been his best assertive advocate to insist they take a more proactive approach to diagnosis his pain (she just would NOT GIVE UP) and IF we had not had such an amazing surgical team led by Dr. Todd Stafford  –  well, let’s just say that we are all very grateful that he had such a dedicated team of doctors. Nuff said.

He lost about twenty pounds during his ordeal, and at six feet and 160 pounds on a GOOD day, that much weight loss made this normally fit and healthy young man look emaciated.

During his post-surgical recovery, his diet was limited to low fiber and low residue foods; a lot of Cream of Wheat, mashed potatoes, and chicken noodle soup. No vegetables, no fruit, nothing that would interfere with the healing of multiple incisions and re-joining of internal organs.

I’m happy to report that three months after the surgery, he’s defied the odds and is back to eating pretty much everything he wants, with only minor digestive upsets.

He went back to work, teaching a summer course at Yale, and I’ve been sending him healthy cookies and high protein bars on a weekly basis —  and as requested, he’ll receive the lentil cookies on Wednesday, and that should keep him supplied until he’s here next week for a short visit. Yay!

You can be sure that I’ll be cooking and baking nonstop. I’m so HAPPY to have my Angel Boy here, surfing with tugboat man and best of all, close enough to touch and hug and play Scrabble and Bananagrams.

Every minute of every day, I’m grateful to be one of the luckiest moms in the world.

To read all about Angel Boy’s surgery, click on the following links: 

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A while back, I posted Alton Brown’s Lentil Cookie recipe that I discovered on Food Network’s website.

This time, I experimented and created a version that’s a bit more intensely nutritious.

LENTIL COOKIESAngel Boy’s Lentil Cookies

They are quite dense, full of protein and energy,  and would make a great snack for hiking.

  •  2 cups whole wheat flour
  • 1 cup rolled oats
  • 1/4 cup protein powder
  • 1/4 cup ground flaxseed
  • 1/2 cup smooth unsalted peanut butter
  • 1 teaspoon baking powder
  • 1 teaspoon salt
  • 1 1/2 teaspoons ground cinnamon
  • 1/2 teaspoon ground allspice
  • 1 cup brown sugar (If you use honey/agave, adjust the flour to accommodate the additional liquid)
  • 1/2 cup oil
  • 1 egg (or not if vegan)
  • 2 teaspoons vanilla extract
  • 2 tablespoons to 1/4 cup plain yogurt
  • 1 1/2 cups lentil puree, recipe follows
  • 1 cup dried fruit, I used a mixture of blueberries, strawberries, cherries, cranberries, raisins, apricots.

Preheat the oven to 375 degrees F.

In a medium bowl, combine egg, oil, vanilla, yogurt, brown sugar. Whisk briefly to incorporate. Add peanut butter and lentil puree and mix thoroughly. In a large bowl, combine the flour, oats, protein powder, ground flaxseed, baking powder, salt, cinnamon and allspice.  Add the flour mixture. Use a wooden spoon or a hand mixer to combine. use hands to mix. Stir in dried fruit. If it seems a little dry, add yogurt. Form the dough into balls about 2 teaspoons in size and place on a baking sheet with parchment paper Bake for 13 to 17 minutes, depending on your oven’s personality.

Lentil Puree:

  • 1 cup lentils, rinsed
  • 2 1/2 cups water

In a small pot over medium heat, combine the lentils and the water. Bring to a simmer, cover, and simmer for 30 to 40 minutes, or until lentils are tender. Remove from the heat and puree. If using immediately, let cool.


 

Time to Exhale: Hospital Update

Hospital-BedThank you, thank you, thank you!  Thank you all for your words of encouragement, support, and compassion. It was super appreciated and really helped to cheer me up when things seemed a little touch and go, if you know what I mean.

Staying in a hospital for more than a few days is UNREAL.

You can’t help but be drawn into the complex interpersonal dramas on the floor  —  with staff AND the rest of the patients.

We have been here 24/7. My DIL and I took turns spending the night with my son so that he’d never be alone. We stayed in a hotel that was close to the hospital, a place to take showers and catch a few hours of sleep.

My son recovered from surgery on the trauma floor. Motorcycle crashes, auto accidents, thyroidectomies, as well as those injured performers from the circus. You prob saw it on TV, right? The human chandelier circus performers who fell forty feet in Providence, Rhode Island? They’re here, being treated for some really horrific injuries.

It was a total media frenzy scene that caused the hospital to go CRAZY. News vans were EVERYWHERE — Fox, CNN, all the big names plus local news.

And then there was the doozy of a roomie — you will NOT believe this is for real, but I swear it’s the truth.

A guy we’ve named “One Tooth Tommy” (for obvious reasons) was the victim of a horrific car crash. He was in the passenger seat, but the driver was running from the police — and ran smack into a telephone pole. The driver escaped unharmed, but his passenger ended up with two smashed legs, two smashed hips, a cracked pelvis, broken arm, broken ribs, and a rod in his back.

It became painfully obvious to us that Tommy’s own long standing personal relationship with drugs made it impossible for a normal amount of morphine to have any effect on his pain. He was only twenty-six years old yet he looked not a day younger than forty.

So…in addition to selling drugs from the hospital room, his girlfriend decided to take matters into her own hands and reduce the pain all by herself by giving him Xanax and probably a cocktail of other things — and almost ended him, too.

I walked by his bed and noticed that he appeared comatose, and not that I wasn’t grateful for the cessation of his swearing and screaming for more drugs, but his “self-medication” seemed to have potentially become PERMANENT, if you know what I mean.

I flew out of the room and flagged down his RN. She rushed in, attempted to rouse him and couldn’t, but she tried asking him all kinds of questions; “what’s your name”, “do you know where you are”…basic stuff that we all need to know, I guess. Right?

When her attempts failed, she flagged down a doctor who was able to rouse him and again attempted to ascertain any lucidity and level of compos mentis. He didn’t know his name or where he was, which caused another level of response to the situation.

The doc immediately shut-off all IV pain medication and he slowly started to become more alert; well, as alert at One Tooth Tommy probably ever is…if ya know where I’m going with THAT.

The nurse had a stern “chat” with the girlfriend about how it wasn’t a good idea to take matters into her own hands because it was unsafe for her boyfriend and it could have killed him.

We’re not sure how much she comprehended, as she had also medicated herself quite liberally, and was slurring her words and weaving up and down the hallway.

You would be absolutely correct if you figured that my son was removed from that room faster than the speed of light.

The room he moved to was shared with an ex-Marine who was a welcome and awesome change — a real gentleman as well as a hero. His reason for being in the hospital? He was stabbed several times in his back and liver because he tried to intervene and break up a fight at a restaurant. A real-life hero.

I’ve got a zillion bizarre stories like this; I should write a screenplay for sure.

But for now, I’m just happy that hell week is drawing to a close and we’ll be going home tomorrow. I can finally breathe. Yay! Pop the bubbly!

 

That Dreaded Call at 3:00 A.M.

free_wallpaper_of_baby_a_cute_baby_holding_a_teddy_bearThey are always our babies, no matter their age, ya know?

Right now, things have calmed down a bit. Fingers crossed, we’ve avoided a crisis of nightmare proportions…

…Monday 3:00 a.m., the incessant ringing of my cell jolts me awake.

I can’t find the damn phone and it stops ringing only to start again.

This time I found it buried under a pile of clean laundry.

When I saw my daughter-in-law’s name on the screen, I almost didn’t want to answer it.

Nothing good comes from a phone call at 3:00 a.m.

Nothing.

And not this time, either.

With a bad connection and dropped words, trying to hear/not wanting to hear, she told me that my son, Angel Boy, was taken to an ER in Rhode Island because of excruciating stomach pains and vomiting.

“What?” That’s all I could say. She had to repeat herself a few times and talk slowly. I wasn’t comprehending.

The pain was worsening and his belly had become distended and was filling with fluid.

The first thing you think of is appendicitis or even a burst appendix, but the tests were inconclusive.

There were other diagnoses floating around but none of the tests pointed to a specific diagnosis: gastritis, diverticulitis, colitis…

The pain was overwhelming and not responsive to morphine.

There seemed to be no other alternative than to admit him and prepare for more invasive testing.

A surgical team was hastily thrown together as exploratory surgery seemed to be the only option.

We’re in California. I’s 3:00 a.m. What do we do?

My tugboat man and I were able to get a direct flight out first thing in the morning and we arrived at the hospital in time to discuss Angel Boy’s medical condition.

Whatever it was, was serious, and needed immediate intervention.

Or. Or I won’t say, but you get the picture. OR is NOT good.

Because his belly was continuing to distend as it filled with fluid and the pain was increasing, there seemed no alternative than a laparascopy with a camera.

The head surgeon speculated about what he might find: a possible bowel obstruction AND something with his appendix.

We gave him the go ahead to fix what he saw, no matter what he found.

We all kissed him goodbye as the first pre-op drugs entered his body and the surgery commenced at 8:00 p.m.

At 10:30 the surgeon came out with a smile.

Apparently, my son had a congenital defect we were never aware of — because up until then it had never caused a problem.

An abnormal sac or pouch that develops at a weak point in the intestines is known as a diverticulum. In some instances, people are born with a diverticulum in their intestines. This condition is called Meckel’s diverticulum.

Meckel’s diverticulum develops between the 5th and 7th weeks of fetal growth.

Because the condition is present at birth, it is classified as a congenital health issue. Although it generally remains silent, life threatening complications may arise.

And they did.

It was a perfect storm of a worst case scenario.

He had a massive bowel obstruction; intestines were strangulated and all knotted up. By the time the surgery started, two feet (24 inches!!!) of intestine had lost blood supply and died, all within a time span of twelve hours. The surgeon removed the necrotic part, did a resection, including eight inches of colon and removal of his appendix.

Without this life-saving surgery, there is no doubt that this Mother’s Day would not have been. It’s anticipated that he’ll have a rapid recovery — he’s already walking around around due in large part to his overall good health and fitness level.

Now, as soon as he’s released and we can fly him back to SoCal, my Mother’s Day will be spent caring for my Angel Boy and nursing him back to health.

His future is as bright as it ever was; this was just a brief course change in a life full of joy and adventure.

My tugboat man and Angel Boy have plans to surf the south swell in SoCal this summer and that’s the best Mother’s Day gift I could ever imagine.

P.S. The surgical team at Rhode Island Hospital were/are AMAZING. We lucked out with a guy who clearly enjoys what he does, who knew his way around this type of surgery, and explained it all to us with intelligence and humor.