The child they said would never eat

Once all Mishayla's surgeries (with the except of the heart surgery) were completed, it was just a waiting game.  Make sure she doesn't have infection, make sure everything is working as best as it can be. 

The days stretched out before me, all the same.  I would get up in the morning and leave my house in the high desert at about 8am in the morning and drive to UCLA arriving about 10 am in the morning.  With the assistance of the nurses, I would sit and hold her, and sing to her, and talk to her. She would open her eyes and look up at me, but mostly she would sleep.

One morning I was watching one of the NICU nurses feeding her.  They would bring a one ounce bottle filled with formula to her, open up her feeding tube, or G-tube, and pour it down.

I had desperately wanted to be able to nurse her, but of course that was impossible.  Then I figured I would pump and bring the milk, but that didn't work either.  My milk never did come in. I had only just a drop of colostrum, and that was it.  We tried hot showers, we tried using a pump, which left me screaming in pain. So Mishayla was left with formula.  They claim this was due to the stress I was under from everything that was happening, I had no "letting down."

I was beginning to wonder when they were going to try feeding her by mouth.  I mean, her esophagus was repaired, it sort of seemed a pity not to use it. I figured the gastrostomy would be closed up before I took her home, and she would be eating. 

That same day, before I went home, the nurse said to me " you need to start learning how to use the tube."
I just stared at her, "Oh, I said, "I didn't think I would need to do that."

She looked at me, questioning, "well, you do want to take your baby home soon, don't you?

Well, what a stupid question.  Of course I wanted to take the baby home.

"Of course I want to take her home, I said.  but I assumed that G-tube would be removed before she went home."

She looked astonished "Oh, no, no," she replied.  "She will more than likely need this the rest of her life."

I felt a sick feeling in my stomach, a ringing in my ears.  "but her esophagus was fixed," I replied.  "Why would she continue to need the tube?"

She realized she was backed into a corner. "I suggest you talk to the doctors."                 

When I did talk to the surgeon, I was somewhat reassured.  "There is truly no way of knowing how she will do; that is why the tube must remain indefinitely.  The esophagus is a muscle, and right now, it is very weak.  It could take a very long time to work properly.  Some children need the g-tube their entire lives, some only use it for a while. There is no way of  knowing at this point what your daughter's needs will be.

But in my mind, how would they know if she could eat through her mouth at all if they didn't even try.

"Can we at least try to give her something by mouth?" I asked.

"Yes," he said, "but you will find she is not able to take very much.   It is going to be slow.  And you are going to have to use the tube."

At the moment, Mishayla literally had a tube hanging out of her side.  I was told when she grew a bit, they were going to put in what they called "a button," which was literally like a small cap, that you open to insert the feeding tube. 

But I decided, since the doctor said it was okay, to try and start feeding her.  The problem was she was extremely weak.  Eating is the hardest work a baby does, and for a sick, premature infant, it is a monumentus task.  I would sit with her, and she would suckle for a minute, and then she would become bradycardic.

This means she quit breathing.  It is like an apnea.  Since she was hooked up to monitors, I could see, after she ate, the oxygen monitors going off, and her oxygen saturation numbers starting to drop.  She could potentially die.

The nurses would take her back, give her oxygen, and in a few minutes, her numbers would go back up to normal. 

I would feel like the most horrible mother in the world.  Was it so important that she eat normally if it was going to jeopardize her life?  Maybe I should just say the hell with it.  It wasn't worth pushing her.  I felt like I was killing my own child.

I would get in my car for the long drive back to the desert.  It was my time, there on the San Diego Freeway. I screamed, I cussed at everything (mostly God; I really hated him), and cried to the point where I would have to pull over and puke on the side of the road.  I felt a helplessness so profound it was unfathomable.  My child was suffering; there was little I could do.

But each day, I would go back, and I would only give her a few sips from the bottle, and put the rest down the tube.  I kept just giving her a little taste, hoping maybe when she was stronger, she would eat. After about six weeks, I was so exhausted from driving nearly 100 miles per day, I was falling apart.  The doctors finally decided Mishayla could move back to the NICU unit of the hospital in Lancaster where she born. Here, she would stay for another two weeks, making her hospital stay a full two months long.  She was born August 3, and came home October 4.

When I got her home, I continued to give her just little bits of formula. The doctors had put her on a special formula called Pregestimil, which was a  predigested formula so the stomach literally does no work to break the food down.  It was by prescription only.  We took the prescription to the local pharmacy.  We order four cans to start with.

"That will be $200.00, please," said the clerk.

Tony and I looked at each other.  We didn't have the money.  Tony pulled out his credit card.  We had no idea it would be this expensive, no one told us.  I fought like a maniac, and finally got the insurance company to pay for it.  But dealing with insurance companies is another whole blog post!!

I got as far as 1/10 of an ounce one day, but she would either have an episode of bradycardia (we had to take a monitor home with us for that reason) or throw it up.  The doctors had her on a drug called Reglin for reflux disease, which was supposed to help, but as the weeks went by, she was not improving.

I called my pediatrician.  He recommended a doctor in the San Fernando Valley named Said Dallazdeh.  He was a pediatric gastroenterologist.  "This guy is amazing," the nurse said.

So I packed up my baby, with oxygen tanks and monitors and the whole deal, and went to see this doctor.  He was a tall, skinny man in his forties, with a thick accent, which turned out to be Iranian.  He came off as arrogant and unapproachable.  He told me  "I care about babies, and for babies to do well, they have to have good parents who understand what is going on with them.  Do you understand  about your  daughter's surgeries?

Terrific, I thought.  He was pissing me off. "Of course, I understand." I proceeded to explain in detail what had been done to Mishayla.

Of course through this whole antagonist interchange, Mishayla, for some reason, is screaming.  The doctor's anger rose "What is the matter with that child," he admonished me. "That child is uncomfortable.  Find out what is wrong with her."

Well, I had no clue what was wrong with her.  I was on the verge of tears, but I figured crying would not be such a good idea with this drill sergeant of a doctor.

He took her from me, and soothed her.  She quieted down.  "First she needs x-rays," he said.

The next day Tony and I were at Northridge Hospital, where the x-rays of our daughter's esophagus were taken.

When he showed us the pictures, we were shocked.  Her esophagus looked like an hour glass.  It was almost completely closed off.  No wonder the kid couldn't eat.

The doctor explained Mishayla needed to have her esophagus dilated.  He was patient, and explained the procedure in detail.  He would insert a balloon like device into her esophagus to attempt to stretch it out and open it.

But there were no guarantees.  "Sometimes, it works, sometimes it doesn't," he said.  "Sometimes it takes one dilation, and it opens up.  Sometimes it takes 20."

What were our options?  If we didn't try, what had been the point of going through all we went through to have her esophagus connected?

So about every two weeks, we started coming to Northridge Hospital, where Mishayla was admitted and prepped for the procedure.  Every time they would take her away, I would feel that same fear.  The fear she would never come back. 

But each time she did, and each time, the doctor was optimistic.  He turned out to be a very personable, caring doctor. 

"People are afraid of me when the meet me, " he said once. "But I'm really a nice guy," he once joked.

Gee, no kidding, I thought.

He was a doctor that would take a poor child, and help them for no money at all.  These kids had no insurance, no nothing.  Some were so ill they were near death. He would tell us because we had decent insurance, and could pay, we were helping him be able to work on these poor children.   He was a doctor that had a passion for children, and healing them, like I have never seen, and have yet to see again.

The last dilatation was on New Year's Eve day, 1999.  The new millennium was to begin.  The whole world was in the process of a massive celebration. Since we didn't want to stay overnight, we came home with Mishayla. I remember Tony had gone to bed, and Mishayla was asleep.  I put the TV on right around 11:45.  I remember the fireworks, the cheering, the big sign that said "2000" lighting up at midnight. 

And that was about all I remember. I never made it to the bed.  I was out, right there on the sofa.  I was exhausted.

But in a few days, Dr. D (this is what he told everyone to call him, since no one could ever say "Dallazdah" (it is pronounced DA-LA-ZA-DAY, nothing all that hard, really) called with the great news.  Mishayla's esophagus was open.  No more dilatations.  They were able to fully open it in four procedures. 

A month or so later, Dr. D. connected Mishayla's "button," which capped off the g-tube.  This made life much easier than to have to haul around a child with a long tube hanging out of her side. 

Mishayla at about 6 months; with her "button"



Not that this made the eating process miraculously fall into place.  Still, she would spit up, and tire easily. But Dr. D. said to feed her, that I should know by now what she could tolerate.  

Little by little, she was able to take more by mouth as time went by. I remember the first time she consumed an entire ounce of  formula at one sitting.  She was probably about 6 months old. 

Small "baby steps" that paid off.  She was eating fully, including solid food, by about 18 months. 

Is there a moral to this story? It would be a cliche to say "don't give up" or "perseverance pays off," because it's really not that simple. 

Why did it matter so much to me, whether she ate with a tube, or a fork? In retrospect, all these years later, that is hard to answer.  Maybe I was more worried about my own ego than I should have been; having a kid that never ate food by mouth.  Maybe I found it a little repugnant, or I was a little embarrassed.  All those things are hard to admit.

But they are also human.  I wanted her to eat, and I didn't give up.  She deserved to have one of the most endearing pleasures of being a human being, that is, to put a piece of food in her mouth, move it around, feel its texture, its taste. To take pleasure in a Happy-Meal, or Halloween Candy, or a piece of birthday cake. I wanted this for her more than I wanted my own life.

Those who know me the best know I am infamous for my stubbornness.  Taurus the bull, that's me.  When I want something I get it. 

But I also, with this experience, had to learn patience.  That my daughter was her own being, and would do what she needed to do in her own time.  I had to get into my daughter's rhythms, and take myself out of my own.  In the end, she was leading me, not the other way around. 

This is something that every parent of a child with a disability has to learn.  You take your cues from them.  And they will teach you. And it's hard as hell to do, but it comes after a while.

It's an experience, and a love, like no other.

Why did those in the medical profession tell me "she would never eat?" I can only surmise that they are        taught to give parents the "worse case scenario" so if the child does better, fine, and if not, there is no disappointment.

Which is crazy, because no parent ever, ever, no matter how bad things get, gives up on their child. It is as natural as breathing to hope for the best for our children.  It's been engrained in parents since the beginning of time. 

And that was it; I hoped for the best.  And by great luck, and a little failth, I got it.  Not to mention one cranky, curt, brilliant, wonderful doctor.

Thanks, Dr. D!!!

Mishayla enjoying her toast!!!