Tag Archives: blind

Did You Make Her Blind?

9 Feb

“Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness immobilized by the gravity of my loss or I can choose to rise from the pain and treasure the most precious gift I have- life itself.” -Walter Anderson

We ended up not having to wait as long as was predicted to see the geneticist. It turned out that the nurse practitioner I worked with was able to pull some strings and get us in a few weeks after Oli’s second conformer appointment.

After visiting with the geneticist we actually began to ponder the absurd questions that she asked us. Questions that I’m sure have to be asked when a child is born with a birth defect.

“Was there any possibility that Seth and I were related? ”

Was there?

How silly, but in that moment we paused and had to wonder.

I was from Iowa and Seth’s father was from Iowa.

Was it possible?

After thinking about it for a second we realized how crazy that was. Of course we were not related.

“Is it possible that I contracted some sort of disease very early in my pregnancy?”

A few people at work in the NICU had also asked me this. Was it possible that I picked up a bug at work and it made Oli the way she was?

That was an awful question to be asked.

Did I somehow “make” her blind?

I honestly didn’t know. I didn’t think that I had unknowingly transported some kind of harmful virus to my unborn child, but I couldn’t be sure.

Was it my fault?

I was supposed to provide a nurturing environment for her to grow and develop properly. I had obviously failed to do this. Maybe it was my fault?

“Did we have any history of blindness or any other birth defects in our family?”

“No. Not really.”

“Not really? Can you please list everyone in your family who was born different in any way.”

We gave her our family history. Let me tell you, after Oli was born I was looking at everything and everyone as a possible explanation to what had gone wrong. We were listing absolutely everyone with any kind of odd feature, behavior, or characteristic. I was thinking about second cousins who I remembered chewed their food weird at the dinner table, or a distant uncle who talked just a little bit too loud for normal conversation.

My family has a history of bad eyesight. I actually had the thought,

Well, maybe my genes deteriorated to the point that her eyes were so bad they just couldn’t develop.
(Yeah, sometimes my mind went a little nuts.)

Family members also gave us their opinion as to what might have happened.

My step daughter, who was 9 when Oli was born, wondered if her eyes didn’t develop because she was born early. We assured her that wasn’t the reason.

My mother thought maybe it was because her family had decided not to donate my grandmothers corneas when she passed away.

Some people in my husband’s family wondered if it was because I had named her Oliana. Oliana is translated to “oleander” in Hawaiian.

Maybe I had destined her to be blind by naming her after a poisonous flower.

Of course, all of these theories were completely ridiculous. Everyone was just looking for an explanation. That’s what happens when tragedy strikes. People start questioning why?

Why did this happen?
Sometimes there are no answers.

In my heart I knew that I had not caused this. I knew that I hadn’t married a distant relative, contracted a disease, passed it on through bad eyesight, pissed off God, or destined her to blindness with a name.

I knew that it had just happened.

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Where do you look when someone doesn’t have eyes?

8 Feb

“what you need and what you want aren’t the same things,”

― Cherise Sinclair, The Dom’s Dungeon

Three weeks after we took Oli to LA to get her first pair of conformers we took her back to get her second pair. She was very fortunate because her right eye (the empty socket) actually stretched a considerable amount. The ocularist was able to fit her with a conformer twice the size of the first one. Sometimes conformer therapy just doesn’t work and kids are never able to wear them.

“So. . .Mr. Haddad, when are you going to lose the awful pegs and put flat painted conformers in? Next month? A couple of months at most, right?” I am incredibly impatient.

“No. It will actually be 2-3 more months before I can put a flat conformer in that right eye. It’s just too small. I wouldn’t be able to get it in or out of her eye without that peg. And she will probably be close to her first birthday before we put painted ones in that look like real eyes.” He explains quietly.

“Oh. That long huh? I guess that’s okay.” I almost start crying.

I was screaming inside my head,

No. No. No! That’s is absolutely not okay. I want to look into her eyes! Fake or not. I should be able to look into her eyes!

Where do you look when you are speaking to someone if you can’t look into their eyes?

To me, eye contact was very important. It showed people that I was paying attention, interested in what they were saying, and respectful. I could gauge their feelings and reactions to what I was saying when I looked into their eyes.

I had to learn with Oli that I could still do all of these things with her, in a different way.

I learned the delicate map of her facial expressions. The raise of her eyebrows and the little bit of furrow between them when she was listening. Her toothless smile, scrunched up nose and the turn of her head when she was happy.

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Her tightly pursed lips turned down at the corners when she was sad.

I learned to look at her whole face and body language to gauge her reactions and feelings. I learned to read her without making eye contact, but with the complete confidence that I knew her emotions.

I learned that I really didn’t need to see her eyes to make a connection with her.

I learned all of this. . .but it never changed the fact that I wanted her to have eyes. Real eyes, fake eyes, glass eyes, plastic eyes. I didn’t care. I wanted her to have them.

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Emergency items are required!

7 Feb

“Having a child is liking getting a tattoo…on your face. You better be committed.” ~ Eat Pray Love screenplay

When Oli was born I got a crash course in packing for a child with disabilities. And it wasn’t only the trips to LA that provided me with my learning experience. We still lived an hour away from Las Vegas at that time, which is where all of her regular doctors and specialists were located.

I have learned over the years that the amount of stuff Oli has to have to go anywhere has not decreased in proportion to her age as it usually does with children. If anything I think it has actually increased.

When she was a little baby I had to make sure to remember to pack diapers, bottles, the mommy torture device, er… I mean breast pump, and a couple changes of clothes for her AND me. She had really bad reflux and was prone to soaking both her and I with sour partially digested milk. On that note, I also had to remember to bring lots of wet wipes and never forget the bulb syringe. While driving I had to keep a close eye on her in the review mirror in case she had a particularly bad bout of reflux. The milk, and later her baby food, would come up and out her nose in which case I had to immediately pull over and perform the very precarious operation of baby nose sucking.

As an older baby she required diapers, wipes, food, clothes, toys and a good song on the radio.

As a toddler these same items were required and we added in a few extra things. The toys we had to bring got more interesting and had to be MacGyvered into our car and hung in a way that she could always find them and know where they were. Young blind children have no concept of item permanency. When a blind baby drops something it just magically disappears into space. Once it’s out of touch with their little hands, in their minds, it’s gone. Poof!

The binky. It was a major disaster if I forgot to bring the binky. I still find myself in a moment of panic when I realize that we are out and I did not bring the one item Oli needs to soothe herself. No binky could potentially ruin a car trip, a nice dinner out, a shopping trip, or any other function that requires my girl to sit nicely for longer than a few minutes.

Going out or on a road trip now forces me to do a medication check list. Has she had her seizure medication? Check. Her drooling medication? Check. Emergency seizure medication in the bag? Check. Prilosec been given for her reflux? Check. Are we staying over night? Then we need more seizure medication, more drooling medication, more Prilosec, and THE MOST IMPORTANT MEDICATION…..

the sleeping medicine. I absolutely CANNOT forget the sleeping medicine if we ever stay over night somewhere. This would be very very bad. Trust me.

She also needs her little potty seat. Even though she’s not fully potty trained I’ve been taking her to the bathroom since she was two. And my girl absolutely insists that I take her poop on the potty.

She needs little toys that I can stick in her bag. Things to entertain her in restaurants, waiting rooms, or in the grocery cart. Like dolls with yarn hair or small blankets that she can flap around. She loves this.

Snacks! My girl absolutely loses her mind when she is hungry! I mean sometimes I think she has been possessed by a demon. Her head starts spinning, she starts snarling and clawing. I’m thinking what is wrong with this child. People in close proximity to her are backing up and grabbing the cross hanging around their neck. And then I realize she hasn’t had a snack in two hours. I only have a two hour window between meals and snacks and then Oli apparently thinks she is starving to death and is convinced that I will never feed her again. Yes, snacks are very important.

Drinks. She has only a slightly more docile reaction to feeling thirsty.

Boogie wipes are also a necessity. She always has a runny nose and they are great for cleaning the bit of maka pia pia (eye sand) from the corner of her eye.

The stroller in case she comes down with a case of floppy spaghetti legs and refuses to walk.

Q-tips. Oh my gosh, I almost forgot to write about Q-tips. Not for her ears either. These are for her eyes. Sounds strange I know but, try fixing a rolled prosthetic eye with your big clumsy fingers. Impossible. Q-tips work perfectly and I am proud to say that I offer training opportunities frequently for Oli’s new teachers and therapists. I probably have personally funded vacations for the CEO’s of Uline with my frequent Q-tip purchases. Well, okay, maybe I haven’t bought that many boxes. But I have bought a lot!

I’m sure there are many things I am forgetting but it seems like I’ve covered the emergency items needed for a trip “to the outside world” with Oli.

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Memorizing the Cars Movie was not an aspiration of mine.

6 Feb

“Love doesn’t make the world go ’round. Love is what makes the ride worthwhile.” -Franklin P. Jones quotes (American Businessman, 1887-1929)

Our first trip to see the ocularist in LA was just a little traumatic…for me. Oh, you were worried about Oli? No, she was fine. I mean she cried a little bit when her ocularist Mr. Haddad first put her new conformers in but, it only took literally about 5 seconds for each eye. At least for her first set.

As her eyes stretched and the conformers got bigger sometimes it was hard to get them past her eye lids. She has only had a couple sets that were really difficult to get in. Once they are in they’re not painful.

Well, wait, I guess I don’t know that they’re not painful since she can’t tell me. I don’t think they are though because Oli doesn’t try to claw my eyes out or maim me in some way which is what she does when she is in pain.

The trips to see Mr. Haddad, and later his partner Beverly, were exhausting. We drove 6 hours (one way) to Hollywood, CA from Las Vegas every 3-4 weeks. We were usually gone about 14-16 hours total because of the time it took to snail through traffic in Los Angeles. We never stayed over night because it was just too expensive and usually one of us had to work the next day.

We took both children with us every single time. Kekoa was 19 months old when we went the first time and Oli was 2 months. To say that it was a little stressful sometimes would be an understatement. But that is what Oli needed so that is what we did.

Thank God for little portable TV’s you put in the car. However, if I never hear or see the movie Cars again it will be too soon. Kekoa watched that movie at least twice every time we went, for 2 years.

I’ll let you do the math.

Let me tell you, you get to know your spouse far more than you ever really wanted to cooped up in a small car with 2 crying children for that many hours. Driving that far so frequently was not without humor either.

I remember one night (actually the wee hours of the morning) we returned home after one of our trips. Seth got into the shower and then immediately laid down in bed and passed out. I was still awake reading when he shot up and out of bed in a panic 30 minutes later.

“Seth! What’s wrong? Are you okay?”

“I almost crashed the car Shannon! I almost crashed!”

“What?”

Apparently he was dreaming that he was still driving and thought he had fallen asleep at the wheel. It was HILARIOUS!

I know when he reads this he will give me his usual response to my rendition of this story.

“Shannon, it was NOT funny.”

It was.

I also want to dispel a common myth about Oli’s “glass eyes”.

They are not made out of glass any more, they are made out of acrylic. There, now you know. It bugs me when people say “glass eyes” I don’t know why, it’s silly. I know…I have issues.

Here is a little history about prosthetic eyes courtesy of Oli’s new ocularist Randy Trawnik.

A Brief History of Ocular Prostheses

The art of making artificial eyes has been practiced since ancient times. Egyptian priests made the first ocular prostheses, called Ectblepharons, as early as the fifth century BC. In those days, artificial eyes were made of enameled metal or painted clay and attached to cloth and worn outside the socket.”
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The first in-socket artificial eyes made in the 15th century were made of gold with colored enamel. In the latter part of the sixteenth century, the Venetian glass artisans discovered a formula that could be tolerated inside the eye socket. These early glass eyes were crude, uncomfortable to wear, and very fragile. Even so, the Venetian method was considered the finest in the world. They kept their methods and materials secret until the end of the eighteenth century.
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In the 17th century the center for artificial eye making shifted to Paris for a time. Improvements in techniques and materials followed. The French word oculariste was given to the makers of artificial eyes.

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In the mid-nineteenth century, glass artisans in Thuringia, a region in eastern Germany, developed a superior glass formula for the making of artificial eyes. Combined with their techniques of blowing hollow glass objects, the center for glass eye making moved to Germany. The methods of making hollow kryolite glass prosthesis are still used today in Germany and many parts of the world. Glass eye making was introduced in the United States in the mid 1800’s by immigrant German ocularists. Although the American Ocularists of this era continued to make glass prostheses, the kryolite glass material itself was exported from Germany.

The onset of World War II cut of the export of kryolite glass to the United States. With so many injured soldiers needing artificial eyes, the U.S. government searched for a replacement material. Almost immediately the new plastics industry came to the rescue. Medical plastics were already being used in the dental field before World War II. The Department of the Navy set up a crash course in applying plastics to the field of Ocularistry that lead to the development of medical grade acrylic plastic and its use in eye-making. Combined with the use of impressions in the design of the artificial eye, modern prostheses can be perfectly fit for each individual patient. The popularity of these methods has continued to increase over the years. Today the vast majority of patients all around the world wear ocular prostheses made of acrylic.

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OMG!! What Did You Stick In Her Eyes!!

5 Feb

“No one is more insufferable than he who lacks basic courtesy.”
― Bryant McGill

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Although talking with these moms helped me tremendously, no one could have prepared me for the calamities of conformer therapy. I described the evaluation as being “awful” so to find a word describing peg conformers is difficult.

Horrendous, horrific, saddening, a catastrophic emotional disaster for an already emotional mother walking a very fine line between a healthy dose of hope and normalicy and a very unhealthy obsession pretending what if…

Peg conformer therapy walked me through new trials and tribulations and reminded me frequently that I did not possess thick skin.

These conformers were not pretty.

It looked like I had shoved little glass sticks in my baby’s eyes.

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"What did you stick in her eyes?" I actually had someone say these words to me.

"OMG! What did you stick in her eyes? Poor baby!"

As she clutches her chest and looks at me like she is about to call child protective services.

“Nothing! Nothing. I didn't put those in her eyes. Well, technically I did I guess, but only to help her.”

I start spouting off unsolicited information about her eye condition. Letting this woman know that Oli was born without eyes and that I drive her to California every 3-4 weeks and actually pay a professional to put these ghastly things into her eyes.

I am giving her way too much information at this point and now she is looking at me like instead of calling CPS she is thinking of calling the local psych hospital.

Well, serves you right lady! Don't say things like that to me. I'm sensitive!

Who says things like that to people anyway? I would never…

I was taught very young "Do unto others as you would have others do unto you". Thank you Mr. Snell circa 1985-1990. He was my elementary school principle and always closed the morning announcements with that lesson. I frequently hear that phrase repeated in my head in Mr. Snell's deep friendly voice. More frequently now that Oli has been with me.

As for spouting off unsolicited information about Oli, I still do this.

I'm going to make her a T-shirt that says "I'm just fine, but my mommy has issues!"

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Growing up with Oli

4 Feb

IMG_1076“You are here in order to enable the world to live more amply, with greater vision, with a finer spirit of hope and achievement. You are here to enrich the world.”
― Woodrow Wilson

I have often wondered what it is like to be a sibling of a child with a disability. I know it’s an adjustment for any child when a new baby is brought into the house. But, what about the child whose life is forever changed beyond just having another little person to live with. It is so much more than parents now being more preoccupied with feeding routines, frequent diaper changes and crying episodes. And it’s more than just knowing that you now have to share mommy and daddy’s attention with a new sister when, well lets face it, you probably weren’t all that thrilled about her joining you. Especially since you were an only child up until now.

Your life changes because now life is riding in the car for hours and then sitting in little rooms with crappy toys and being told to “be quiet” while you try to wait patiently. It’s waiting in these rooms several times a week when all you really want to do is go back home and play with your toys and watch the Cars movie…again. It’s sensing the atmosphere change in your house and feeling the weight of a sadness that you don’t understand but, seems to have followed your sister home from the hospital. The weight that seems to intensify after waiting in another one of those little rooms.

As you get older you start to notice that your sister, who you have waited to play with since she was born, never seems to get old enough to play like you. She doesn’t sit up very well when she does learn to sit up and then she can’t see when you try to show her your newest Lightening McQueen car or your new Hot Wheels race track. Mommy tells you to put your toys in her hands to show her things, but frankly this doesn’t make sense either because then she only puts your new toy in her mouth and ruins it with slobber. She never learns to move around the house which means mommy has to carry her every where. The words “Oli just needs more help” are lost on you when you just want to be picked up and carried around like before. You love your sister but, just don’t understand her. You ask questions and want to know why she is so different than you but, mommy’s explanations that God made her different don’t make sense. Why can’t the doctors just make her better. She is obviously sick and this is what doctors do. Why doesn’t she ever get any better? Why do they keep taking her to the doctor if they don’t fix her?

As you grow and change, learn your letters, learn to count and tie you shoes you try to show your sister so she can learn too. But, your attempts are to no avail and she doesn’t seem to get it. She won’t talk to you and now you are drifting farther and farther apart. She starts to do strange things like flap her arms, hum loudly and shake her head. You try to play like her to connect with her in some way but, what seems to amuse her is just boring to you.

You never give up though. You never give up trying to form that connection with her.

She is your sister despite your differences. Mommy and Daddy have always taught you to love her and help her and that is exactly what you do. Not so much out of a feeling of obligation but, because that is just who you are.

Kekoa you are such a special little boy. I love that you just love her and even though it’s been 5 years since everything in your life changed, it has never dampened your spirit or your love of your family and life. Please keep your kind heart and don’t pay any attention to people who may try to lead you down a different path.

You, my son, are going to change the world.

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Oli is just a little quirky.

3 Feb

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“Sometimes you just need to look at life from a different perspective.” -Unknown

As the first few days of Oli’s life turned into the first few weeks, results began to trickle in from Oliana’s many tests. And I do mean trickle. Sometimes it seemed to take forever to hear anything back. I guess I can sum up what most of those tests found by saying, they were pretty normal, except… not completely.

My sweet Oli is just kind of quirky.

The cardiologist said that her echo was normal except for a few things. Oli’s first quirk. The right ventricle in her heart was a little larger than normal and there was a small hole in her heart that should have closed when she was born, except that it didn’t. It was very minor.

She had a repeat pelvic ultrasound to check her kidneys. They still had extra fluid in them and then the doctor threw in a bonus quirk. She had 2 uterus’s.

What? I’d never heard of that either.

I was starting to think that I should have paid more attention in nursing school.

Of course, as soon as I got home I Googled “two uteruses”.

Have I mentioned how much I love Google?

Apparently this is not all that uncommon.

Google told me that the there were two draw backs.

Sometimes when a woman with two uterus’s gets pregnant the baby can be born preterm because the uterus’s do not stretch to the size of one normal uterus. The baby runs out of room.

The second draw back was that it is possible for a woman to get pregnant at two different times and have pseudo twins. A baby in each uterus.

Well, Google. I’d say those are pretty big drawbacks!!!

A trip to the endocrinologist revealed that her pituitary labs were normal, except her pituitary gland did not look normal on the MRI. He said that her posterior pituitary gland was ectopic. Which just means that it wasn’t in the spot that it was supposed to be. Oli has had a few more MRI’s since then and I have heard many different opinions about how her pituitary looks.

Is it moving? Changing? Mutating? I have no idea.

I don’t think anyone really has a definitive answer as to what is wrong with the appearance of that gland.

I told you she was quirky.

The rest of the MRI results were normal except….(Yep. You guessed it) for a few things.

Apparently she did not have an optic chiasm or a pineal gland.

Are those important?

Here is what Google tells me about these VERY important pieces of her body.

1543,Visalius'OpticChiasma (2)
The optic chiasm or optic chiasma (Greek χίασμα, “crossing”, from the Greek χιάζω ‘to mark with an X’, after the Greek letter ‘Χ’, chi) is the part of the brain where the optic nerves (CN II) partially cross. The optic chiasm is located at the bottom of the brain immediately below the hypothalamus.

The images on the nasal sides of each retina cross over to the opposite side of the brain via the optic nerve at the optic chiasm. The temporal images, on the other hand, stay on the same side. This allows the images from either side of the field from both eyes to be transmitted to the appropriate side of the brain, combining the sides together. This allows for parts of both eyes that attend to the right visual field to be processed in the left visual system in the brain, and vice versa. This is linked to skin sensation which also reaches the opposite side of the body, after reaching the diencephalon (rear forebrain). This decussation (crossing) is an adaptive feature of frontally oriented eyes and therefore having binocular vision. (Some animals, with laterally positioned eyes, have little binocular vision, so there is a more complete crossover of visual signals.)

Beyond the optic chiasm, with crossed and uncrossed fibers, the optic nerves become optic tracts. The signals are passed on to the lateral geniculate body, in turn giving them to the occipital cortex (the outer matter of the rear brain).[2]

250px-Illu_pituitary_pineal_glandsThe pineal gland (also called the pineal body, epiphysis cerebri, epiphysis, conarium or the “third eye”) is a small endocrine gland in the vertebrate brain. It produces the serotonin derivative melatonin, a hormone that affects the modulation of wake/sleep patterns and seasonal functions.[1][2] Its shape resembles a tiny pine cone (hence its name), and it is located near the centre of the brain, between the two hemispheres, tucked in a groove where the two rounded thalamic bodies join.

The MRI also showed that her optic nerves are so extremely small that they can hardly be visualized. In a few years, they weren’t visualized at all.

And that folks is one reason why my girl does not see and a BIG reason why she does not sleep!

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I Need A Cocktail!

2 Feb

“Oh, my friend, it’s not what they take away from you that counts. It’s what you do with what you have left.” ~Hubert Humphrey

And so it began…

As awful as that first evaluation was, I knew that it was only the first of many. Countless interactions with doctors and specialists, listing endless possibilities of what could be wrong with her. I know that they were trying to help us but, I started to feel like I needed anti-anxiety medication or a stiff drink every time I walked through their doors.

What kind of syndrome, disease, or affliction hypothesis are they going to throw at me today?

Sometimes I knew right away as I rushed home to Google their current theory.

Okay, I know she doesn’t have that!!

Sometimes I came up with my own diagnosis.

Whoops! Cats out of the bag!

I still do that sometimes.

(Didn’t I mention that my special needs mother hat also came with a medical degree.)

I guess in a way I am lucky. I knew right away that something was wrong with Oli. I’ve never had to search out doctors and try to convince them that something is wrong with her.

Ahhh…the silver lining?

On the other hand, I have had to convince them of things that are not wrong with her.

Yes, I promise you she can hear.

Yes, she really can feed herself a little.

Yes, she really can repeat a few words.

Yes, she really can walk a few steps by herself.

Yes, I promise you she does smile and laugh.

You are just not warm and inviting enough to have earned her smile nor are you funny enough to have earned her laugh.

Poking at her probably doesn’t help.

Sorry but, your loss.

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Stop picking her apart!

1 Feb

“I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next.

Delicious Ambiguity.”

― Gilda Radner

Driving home from Dr. Hyun’s office that day my brain felt like it had shifted into overdrive. I was calling all of the doctor offices and the medical center trying to schedule Oli for her appointments, MRI and lab draw. Flipping through my appointment calendar I remembered that I also had to call Nevada Early Intervention Services and schedule an appointment with them. NEIS serves the special needs children in the Las Vegas and surrounding areas that are under the age of 3. After age 3 the children transition into the school district.

No one had recommended that I call NEIS. I just happened to remember referring some of my patients to them while reading off their discharge instructions.

I’m thankful that I knew of them and knew that they might be able to offer us some help. To be honest, I didn’t know exactly what they did. I just knew that when I had a patient going home that might have some developmental delays we told them to call NEIS.

A woman from the front office answered my call and set up an evaluation for the following week. She told me to bring Oliana to the appointment and they would look at her and decide which services she would benefit from.

I hung up the phone and was proud of myself for finally doing something for her instead of just worrying about all of the things that I couldn’t do.

Later that day a woman I worked with contacted me and offered to come out to my house to look at Oli. She was a neonatal nurse practitioner in the NICU I worked at and she also occasionally worked with the pediatric genetic doctor in Las Vegas. She told me that if she came out and did her own evaluation of Oli she might be able to submit it to the doctor and get her in earlier than the 6-9 months that we were told. I was more than happy to comply.

When she came out to the house she began the physical exam. She laid Oli down on a small flowered blanket and began measuring every inch of her body with a little fabric measuring tape. I was not prepared for the onslaught of abnormalities that were revealed to me during that evaluation.

Her little ears were too floppy.

Her eyes were too far apart.

Her eye brows were not level.

The bridge of her petite nose was too wide.

Her nipples were too far apart.

The space between her delicate fingers was too wide. (What? Why does that even matter?)

Her peach fuzz covered head was too small.

Her physical tone was too weak.

The list went on and on….

I just wanted to scream at her.

Stop! Stop! I don’t want to hear any more!

This is my child! My perfect little angel and you are picking her apart!

What child could possibly measure perfectly according to your standards?

Please, just stop!

Leave my baby alone!

But she didn’t stop because I couldn’t yell any of those things. I just let her continue until she was finished and I was completely defeated.

Then she got into her car and left and I picked Oli up and cried.

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The doctors opinion

1 Feb

“One person’s craziness is another person’s reality.”

― Tim Burton

Continuing on our scavenger hunt, the woman from the blind foundation gave us another name. A pediatricians name. Oli had already seen one since leaving the hospital, but we were not impressed.

The opthamologist told us to make sure that Oli’s pediatrician drew labs to check her pituitary gland. She told us that she knew kids with microphthalmia commonly had abnormal pituitary glands and that it was imperative to check the labs.

Her first pediatrician just blew me off with an annoyed look when I asked for the labs to be drawn. Apparently this was a common attitude with this particular group of pediatricians.

Don’t we need to check her pituitary labs to make sure she doesn’t need medication? Don’t we need to check her growth hormone?

No. We don’t need to check them right now. We’ll just watch her and see what happens.

Watch and see what happens? She’s not a science experiment or an action movie! I don’t want to just watch and see what happens! I want answers!

We will just wait until after you see the geneticist and see what she says. I’ll wait for her recommendations.

There was only one pediatric genetic doctor for the entire Las Vegas valley. The waiting list to see her was 6-9 months long.

Don’t you think we at least need to do an MRI to take a better look at her brain? Don’t you need to draw chromosomes? I’m sure the geneticist will want chromosomes drawn. What about her kidneys? The doctors at the hospital said that you should refer us to recheck her kidneys.

No. I’m not going to order any tests.

By this point she was really annoyed with me for questioning her. She knew, that I knew, that she was uncomfortable taking care of Oli. She had no idea what to do for her.

I left that appointment feeling frustrated and bewildered that a doctor wouldn’t want to look further into what was going on with my daughter. Why didn’t she want to help her? Now what?

Then we went to the open house at the blind foundation and received the name of the perfect pediatrician for us and for Oli.

Dr. Rosemary Hyun.

The day of Oli’s first appointment she came in the room and sat down.

How are you doing?

(You can guess my answer.)

I’m fine. Thank you.

I’m glad that you were able to meet another family with a child like Oliana.

Yes. The mother of the boy gave us your name. We weren’t very comfortable with Oli continuing to see the first pediatrician we scheduled.

I’m glad you’re here. Let me just take a quick look at her and then we will discuss what tests need to be ordered and if there are any additional things you want ordered.

She was asking my opinion? Really?

I was so surprised. This doctor was actually considering what we needed as her parents. She was thinking like a parent herself. What would she want to know if it was her child. I probably don’t even need to say this but, for a doctor, this quality is very rare.

After she looked over Oli carefully she began to write down a list of tests and labs to be ordered. She asked us if we needed anything else. Then she handed us the slip of paper detailing everything that she had ordered.

Cardiologist appointment for an echo.

Endocrinologist appointment for labs.

Urologist appointment for her kidneys.

MRI of her brain.

Lab appointment to draw her chromosomes.

A follow up appointment with her.

A referral for the geneticist.

It seemed like an overwhelming amount of appointments. Especially, since I was used to seeing the doctor only once every 3-6 months with my son.

But I needed answers.

As I walked out of her office a startling realization hit me.

Was this how the families of my patients in the NICU felt when I sent them home?

When I discharged them from the hospital with a list of appointments, doctor names, medications, medical equipment, and specific feeding times.

Was this how they felt when I carried their baby through the sliding glass doors of the hospital, handed them the car seat and 15 plastic hospital bags containing all of the things they needed to keep their child alive and said “Good luck”!

My experience with Oli began to give me a whole different perspective and a new found respect for the families of my NICU babies.

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