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What Do I Know? I’m Only Her Mother.

18 Feb

“Sweater, n.: garment worn by child when its mother is feeling chilly.” ― Ambrose Bierce, The Devil’s Dictionary

After Oli settled down it was time to transfer her to a room on the pediatric floor for an overnight stay. As they wheeled her upstairs I am staring down at my daughter’s beautiful face. My mom calls her a china doll because that’s what her face looks like. Especially when she was a baby and sleeping. Her face was so peaceful. Chubby cheeks, little porcelain nose and a perfectly round head.

The nurse notices me staring at Oli as she settles her into her new room and comments on how beautiful she is.

I know that she is beautiful but I’m a little taken aback by a stranger saying it. I just wasn’t that used to it. She was very beautiful, but because of her eyes most people just didn’t say anything.

“Thank you.” I tell the nurse.

“Let me know if she wakes up and seems like she is in pain. She has some medication ordered for her, but I don’t want to give it unless she absolutely needs it.” the nurse finishes up and leaves the room.

I was thinking “Oh good. This nurse won’t make her wait forever when she is hurting.” I breathed a sigh of relief and settled onto the chair to watch TV.

A little while later Oli wakes up crying. I pushed the nurse call button and tried to comfort her as I waited. The doctor had warned me that she might be a little more uncomfortable because he didn’t put in a G-tube so there was no way for gas to escape. Because the top part of her stomach was now wrapped around the bottom part of her esophagus (a fundoplication) she could no longer throw up, but she also could no longer burp. The doctor told me that if the pain the reflux was causing her was worse than the gas pain then it wouldn’t be too bad for her and she would adjust quickly.

Looking down at her now, I started questioning my decision not to put in a G-tube.

The nurse finally comes back into the room and has to raise her voice above Oli’s wailing. “Yes?”

“Yeah, I think she needs some of that magic juice ordered for her. I think she is in pain.”

“Oh I think she’s okay. She’s probably just hungry.”

I stare at her incredulously. Ummmm, no. I think I know her. First of all I have taken care of this little person while she lived INSIDE my body for 9 months and second of all I have taken care of her OUTSIDE my body for 7 months. That is 16 months 17 days 10 hours and 15 minutes longer than you have taken care of her. Besides, I think by now I know the difference between a cry of pain and one of hunger.

“No. She’s not okay. You need to give her some medicine.”

The nurse gives me a disproving look and then leaves to get the medication.

I couldn’t believe that she was actually going to argue with me!

She came back in the room and gave her the medication. Throughout Oli’s 2 day stay this was an ongoing fight with this nurse. I’m not sure what the problem was?

By the next morning Oli was much better and didn’t seem to be in pain at all. I got to feed her Pedialyte first which she inhaled (as much as I would let her. I had to be careful that she didn’t suck in too much air). Then once she was tolerating her formula we took her home.

The surgery was a success and I was so happy that Oli was feeling better. The doctor was right. The gas pains didn’t seem to bother her at all. The only downside is when she gets the flu she isn’t able to throw up unless the pressure is very great. So instead of feeling crappy and just barfing everywhere and feeling better she dry heaves for hours. It’s no fun for her.

As for the nurses I’m not sure what the problem was. They really should learn to trust parents and understand that they know their children. I didn’t want my baby doped up either but I knew that she was hurting and isn’t that what the medication is for?

Somehow being just a parent is equivalent to being stupid in some doctor and nurses eyes despite your credentials. What do I know? I am just her mother.

Even though I have not eaten, slept, or breathed, unless she has first, from the moment she was born. I can’t possibly know more than someone who has met her. . .once. . .for 15 minutes. . .and can’t remember if she is a boy or a girl. . .

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Getting Rid Of The Reflux

14 Feb

“While we try to teach our children all about life, our children teach us what life is all about.”

― Angela Schwindt

Finally when Oli was 7 months old we made the decision to surgically fix her GI reflux.

I could no longer watch her struggle to keep her food down. Despite thickening her formula, a strict regimen of reflux medication and eating baby food, the reflux was not improving.

We had to wait several months before making this decision because she didn’t fit into her GI doctors normal category of surgical patients. She was still gaining weight, growing, was at that time still sleeping, and was not screaming most hours of the day. The exact opposite of most of his patients.

He kept putting off the idea of surgical intervention until one day when I brought Oli in for her monthly check up.

“How is she doing?” He asks quietly. He was a tall, gentle, soft spoken man with an awkward personality.

“Well not to good. This cannot be normal.” I tell him. Frustrated with her lack of response to his treatments, my goal today is to show him how miserable it was for her. I laid Oli face down on the crisp, white exam paper.

“Now just watch.” I say as I encourage Oli to lift her head. This was an ongoing struggle for her because of her lack of visual motivation,. But also because every time she exerted any abdominal force whatever was in her stomach seemed to become pressurized and shot out her nose. As he is looking down at Oli she performs right on cue. A thick stream of chunky old milk, tinted green from her lunch comes out her nose.

“This happens every single time I put her on her tummy. You have to do something.”

“Yes okay. I guess it’s time to look into surgery.” He relents.

“Great. I know a pediatric general surgeon who I’m comfortable with. I’d like him to perform the surgery because I know he won’t put in a G-tube unless she absolutely needs it. I don’t think she needs one and he agrees.”

A few weeks later Oli had the surgery. She did not need the G-tube. I was happy that I had found a doctor willing to listen to me and not just put one in, as was the general practice.

One week after the surgery she began sitting up and was finally comfortable lying on her tummy.

This One’s Broken

10 Feb

“The world breaks everyone, and afterward, some are strong at the broken places.” -Ernest Hemingway

The geneticist we saw was a large, friendly woman with a warm smile and a gentle nature. I was not quite as nervous when she asked if she could now perform a physical examination of Oli. I thought, “This woman is so nice she can’t possibly give me any more bad news.”

She started examining every inch of Oli’s little body and then offering phrases to her assistant. I was listening intently as she rattled off terminology to describe my Oli for her chart. Terminology that I was familiar with. I was starting to think that this woman wasn’t so nice.

“Extremely small eye sockets characteristic of microphthalmia and anophthalmia, hypotonia exhibited in all major muscles, microcephaly, congenital mid line defect, dysmorphic facial features.”

These words cut me to my core and left a painful gaping hole in my heart.

Dysmorphic facial features.

What? Are you trying to hurt my feelings?

I felt like someone had punched me in the stomach. How could she describe my beautiful daughter as dysmorphic?

Hypotonia in all major muscles.

So what if she was a little weaker than other babies? She could still catch up and get stronger.

Congenital mid line defect.

Mid line defect refers to the abnormalities associated with the fact that the neural tube failed to close properly when the baby was developing during the first trimester of pregnancy.

I hate that term. Mid line defect. I guess because it has the word defect in it and in turn implies that my girl was born defective. Like some sort of toy or kitchen gadget that fails to work properly when you plug it in. I couldn’t just return my girl to the factory and demand a refund. I couldn’t look at God and say “Sorry. This one’s broken. Send me a new one.”

Satisfaction is not guaranteed with children and I refuse to view my daughter as defective.

I told you I was sensitive.

Microcephaly.

She has an unusually small head. I pointed out to the doctor that I seem to also have a small head. I told her that I was able to wear my 9 year old step daughter’s bike helmet. Although, my husband has a huge melon (sorry honey) and I would think that between the two of us it would have balanced her out genetically.

She explained that while Oli was probably prone to having a smaller head because of me, it was more than that. Oli’s head measured below the 5th percentile on the growth chart.

“What does that mean in terms of her development?” I asked quietly.

“It can mean any number of things. She could develop normally or it could mean some mental retardation. Usually with microcephaly we tend to see some form of MR.” She replied honestly with sympathy in her voice.

That was when the fear for Oli’s future really took hold. I was already terrified of her facing the world without any sight but, now I had to think about her learning capacities as well.

Combined with all of the other things we had learned about her, it was starting to look like my girl was not just 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.

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.

Searching for the end of the rainbow

29 Jan

“Remember, an easy question can have an easy answer. But a hard question must have a hard answer. And for the hardest questions of all, there may be no answer -except faith.” -Charles Sheffield, Brother to Dragons

We went to the opthamologist appointment 3 days after I took Oli home. This is the doctor that the hospital had recommended to us. Since this is the only suggestion we had received so far, we went.

Her name was Dr. Shin.

She was sweet and sympathetic, but she told us that she was not familiar treating microphthalmic children. She could only tell us what we already knew. Oli’s eyes were extremely small and she probably would be totally blind.

She did lead us a few more steps into the beginning of our journey by giving us two names.

One was the name of a family who also had a son with microphthalmia. This family had started a foundation called the Nevada Blind Children’s Foundation.
She told us that the foundation was having an open house in a couple of days and we should go and meet this family.

Finally! We were going to be able to talk with someone who knew what we were going through.

The other was the name of a colleague she went to school with. He was another opthamologist but, had treated kids with microphthalmia before. He was located in Los Angeles which was about 6 hours away.

I still did not know what all these people were going to do for my daughter and my head was swimming with too much information. I thought that the doctor in L.A. was going to fit my daughter with her first pair of conformers. I found out 2 months later, when we saw him, that he was just more of an expert on her eye condition. I’m still not completely sure why we needed to see him. He told us the same information that we had heard since she was born. That her eyes were extremely small. We did finally get the name of an ocularist though.

I felt like I was on a scavenger hunt. Each person we met would lead us to another person and they in turn would lead us to another. Each clue was supposed to be leading me closer to an answer.

But I never received the answer I was looking for.

A way to make her better.

I may as well have been searching for the end of the rainbow.

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