This isn’t healthy.

I should’ve been asleep an hour ago. Instead of taking care of myself, I spent a bunch of this Friday evening, when Cody and I are supposed to be relaxing and celebrating our wedding anniversary, scouring photos of Stella from the time before her patch, and shots from more recent times. You see, I read somewhere that the little white reflection of the camera’s flash that appears in each eye have identical placement if the eyes are aligned. If the eyes are not aligned, those little bright spots won’t appear in symmetrical fashion. Thus my mission tonight has been to use photographic evidence to determine precisely when her brain started to favor her right eye–or prove that perhaps it never did. Just writing that sentence made my brain deflate like an impaled beach ball.

Underneath it all, I’m scared. During Stella’s feeding aversion and tube days, mistakes were made at Seattle Children’s Hospital. Even before we got there, I had to fight like hell and come to the brink of a nervous breakdown before anyone would help us. I’m terrified that Stella’s vision, and all the many, varied areas of her life that it affects, will suffer greatly if I don’t catch the missteps that seem sure to happen, if they haven’t already. I fear that without my total vigilance, pertinent information will fall through the cracks, bringing her eyesight and quality of life along with it.

Questions about amblyopia, stereovision, and all the other details pertaining to Stella’s eye issues poke at my brain and wrench my heart. I feel helpless because we’re taking steps to address a complex problem I don’t fully understand. I don’t feel confident. I’m not able to trust doctors so easily anymore. Even really good ones like Stella’s current developmental ophthalmologist. Maybe I’m a pain in the ass. Maybe I am crazy. Maybe I shouldn’t question everything.

But I just can’t help it. My love for Stella–it’s so big it makes me clumsy sometimes. Hopefully, I can find the strength to achieve better balance. On one hand there is a relatively objective quest for truly excellent care and solutions based on accurate testing and conclusions, the latest research and best practices from around the world. On the other, a ferocious protectiveness that emerges out of not only my vast love for her, but old trauma and new fears.

Sadly, our past experience taught me that at the end of the appointment-filled day, it’s all on my shoulders. If I’m lucky, there will be supportive voice or two, but no one who can help Stella without me there to champion her cause. No, I was taught that Stella’s outcome can’t be left for others to devise. Can’t be put in the hands of those who don’t see the nuances of her day-to-day visual reality, those who see Stella as another patient or chart and not the owner of the cutest toes ever to touch the surface of this planet.

I’m her mom. I look into her big eyes, the color of blue ocean made softer by partly cloudy skies, a hundred times a day to tell her “no screaming!” “good job!”, “you did it!”, “take turns!” and most often, “I love you!” I’m having a hard time letting go. I’ll never be an expert or an ophthalmologist, but I need more answers and education about Stella’s particular situation. Is it too much to ask to get a solid understanding? I don’t think so. I hope I can go about getting it in a way that builds bridges rather than creates tension with the wonderful people who can help my sweet Stella. And surely after that, with some work, I can let go and simply follow the path laid out for us. Not viewed through a lens of fear, but simply a watchful, hopeful, and much less exhausted eye.

P.S. Today, Stella and I did a good job with our daily home vision therapy exercises. We even had fun. I got an email from the vision therapist in response to my questions that was kind, helpful and with promise of more answers to come from the doctor.

No acute abnormalities.

This is part of a new segment I’m calling “Eye on Stella: Strabismus Watch 2010.” Sorry. I just thought that was kind of funny. And I’m running with any humor I can find these days.

The ER, whose job it is to save lives and not provide conclusive diagnoses, called Stella’s condition “convergence spasms.” A quick google search on this term terrified me (apparently, in some cases it’s brought on by hysteria–Stella’s tantrums aren’t THAT bad), and thankfully led me in another direction. After some research, and due to the nature of what actually happens to Stella’s eyes on occasion, I’m convinced that they’re incorrect. My theory is that Stella has the treatable, relatively common condition known as intermittent strabmismus, known to flare up during times of stress, fatigue, or illness. Of course, last time I checked I was a stay-at-home mom and copywriter–not an ophthalmologist. Though, I did diagnose my husband with photography-induced crazy-eye. Nailed that one.

So, last Friday. It was:

The culmination of a week during which Stella barely ate and lost a whole pound of weight (at least), due to a bastard of a cold entailing massive congestion and a cough that could drown out a chainsaw.

The day Stella may have bumped her head on the window sill in the kitchen. I was making lunch, heard a scream, and only saw what happened out of the corner of my eye.

When her eyes rolled in severely, a total of ten times by 11pm for two to ten minutes per spell. When this happened, she couldn’t see remotely straight.

The evening we headed to her doctor’s office having snagged the last appointment of the day, waited as they paged neurology at Children’s, then headed to the ER, where they awaited our arrival and Stella was not allowed to eat or drink for several hours and underwent a head CT scan that showed “no acute abnormalities.”

Since that day, I’ve been carrying around a feeling that threatens to burst my chest. It ebbs and flows. It makes me cry, sometimes. It makes me think about what-if’s and the meaning of life. It makes me wonder, once again, if I’m strong enough to survive parenthood. But I can’t quite pinpoint it. It’s too vague and all-encompassing to grasp. So I keep wondering what it is. I don’t think it’s as simple as “anxiety” or “fear.” It’s something to do with those. But more do to with love. It is absolutely huge and it is always there, probably in every parent, but right now it’s much too close to the surface. Which makes it hard to function.

On the other hand, after unthinkable tumors and lesions and brain bleeding were ruled out, I am obviously extremely relieved that the issue appears to be isolated to her eyes–or more specifically the muscles that control her eyes. If I’m right and it’s strabismus, early intervention ensures an excellent prognosis, ideally achieved through vision therapy (eye exercises) and maybe a patch to strengthen the weaker eye (which seems to be her right one). But I’m having a hard time as we navigate the two weeks that separate us from her ophthalmology appointment at Children’s Hospital. Every time she cries or screams in frustration or stares off into space or rubs her eye or refuses to nap or has a tantrum, I feel a contained form of panic rise up and I’m gripped by a question that is more of an all-encompassing mentality: What is wrong? This is a terrible way to live, really. A mode of existence encouraged by the worst-case-scenario culture of the internet, where I spend too much time. It’s a way of being that I am familiar with, as a worrywart by nature and having gone through Stella’s feeding aversion with her, but it’s currently heightened. Maybe there’s a touch of PTSD-like trauma from our tube days. Following Friday’s scare, I jump too quickly to the idea of wrongness. But! There are also times in which I see more clearly and with more appreciation everything that is right. The contrast between the two is sharp. It makes me ache.

I sometimes wonder what is wrong with me, and the way I see–the world and myself. Why is this all so hard for me? Why am I so jumpy around Stella since Friday? Why does it sometimes feel as if I walk on eggshells through life and motherhood?

As I sit here, I’m afraid of the radiation of her CT scan (ugh, do I remember correctly that they had to run it twice? why didn’t they work with us to keep her still in order to get it right on the first try?) and of an admittedly imagined potential for vision loss (could this nebulous eye issue make life harder for Stella?). Since Friday, I’ve seen her right eye drift in very briefly a couple times, and it jolts my entire nervous system like an electrical current. I’m disturbed when I see her eyes misaligned, not because she is any less beautiful or sweet for it, but because it’s a signal that something is likely amiss with my baby–something I don’t understand. What’s causing it? What does it mean? How will it affect her? My mind fills in the blanks, creating scenarios and possibilities with whatever is lying around: fear, anxiety, hope, and love so strong I can hardly bear it sometimes.

Back when Stella wouldn’t eat, I always felt 100% convinced that in the end, she would be just fine. Beneath all the panic was a kernel of certainty. It’s still there.

The road to a tube-free Stella.

At long last, we see GI!

Yesterday, after waiting for weeks, we met with Gastroenterology (GI) at Seattle Children’s Hospital. They adjusted and increased Stella’s meds, since reflux still seems to be causing some pain and preventing her from eating more. We will also meet regularly with a GI nutritionist who can help us figure out how to wean Stella off the tube. I am so excited to have this extra help, to speed along the process of achieving a tube-free Stella.

They also recommended that we cut back from two to one tube feeding at night. That way, she should be more hungry during the day, and hopefully we’ll see her bottle intake rise. We THRILLED because it’s a step toward ending our reliance on the tube, and because we’ll only have to wake up once during the night! Being better rested should help our ability to cope with any ups and downs, and hopefully any improvements in our wellbeing and attitude will rub off on Stella.

Our hospital experience

We have benefited tremendously from the experts at Children’s, mainly on an outpatient basis, and I am so very thankful that we live so close to one of the best children’s hospitals in the world. On the other hand, as I mentioned in an earlier post, mistakes were made, during our four-day hospital stay in November, that diminished the value of our time there. I was recently reminded that I promised to explain what happened, and so far haven’t followed up. So here goes…

The decision was made to admit Stella to Children’s because her weight gain was slow and because she had such a strong, intense aversion to eating that it was requiring superhuman, beyond stressful, round-the-clock efforts to feed her. And even after my weekly, monumental feeding campaigns, she’d only gain two to four ounces per week at the MOST, when at her age she was expected to gain around an ounce per day. And she’d gained well until early October, around the time of her ER visit due to an incidence of vomiting and bloody diarrhea, when her rate of weight gain slowed to a near halt. Something was very wrong and it was clear that we needed more hands-on help.

During the check-in procedure during which they asked us all kinds of questions about Stella, while crying and watching a smiling Stella squirm on the oval, crib-like, hospital bed, I wondered aloud to the nurse, “She looks so happy. Why we are here?”

The nurse replied, with empathy in her voice, “We see babies like Stella all the time.” Somehow, this was reassuring. Besides, I absolutely knew that we could not continue living as we had been. It was becoming unbearable.

Blunder number 1

As you know by now, Stella’s course of treatment entailed placement of the NG tube and a switch from breastmilk to hypoallergenic formula. We had to feed her every three hours, trying by bottle first, then giving her via tube whatever she didn’t take (we basically still do this). The hospital’s first mistake was prescribing a level of formula intake that was insufficient for proper growth. In fact, they weren’t giving her much more than I’d been able to force her to take at home! I discovered this upon meeting with the nutritionist, who shook her head when she saw the level of intake that Stella had been given up to that point in her hospital stay.

No wonder Stella had been screaming in hunger a half an hour before the bottle was due. And even more upsetting was that her bottles were often delivered to our room late. I had to go out and remind them that it was time for Stella to eat. We were there because she wasn’t eating enough, and at times, she was more hungry than ever.

Blunder number 2

I detected the second unfortunate error during rounds. Before attending rounds that morning, when a flock of doctors gathered outside our room to review and discuss Stella’s status and progress, I’d asked one of the residents to bring her growth chart so that I could take a look. I’d heard three different doctors/residents cite three different growth percentiles for Stella, and I’d had enough. I wanted to know where she stood. Period. So I examined the chart after grilling the doctors during rounds, and immediately noticed that while Stella was not yet three months old, her weights had been plotted as if she were FOUR months old. Therefore, her growth curve looked like it had totally flat-lined, when, in fact, it had not.

They were taken aback by my discovery and tripped over themselves in the rush to reassure me about her course of treatment, reminding me that she needed to be there because “it shouldn’t be this hard to feed your child.” You think? I knew this, of course, but was alarmed upon realizing that the decision-making about my sweet Stella’s care had been driven by incorrect data. She hadn’t dropped, percentile-wise, in the drastic fashion they’d believed. And to make matters more mind-bendingly frustrating, I’d actually been purposefully proactive about preventing just such a misunderstanding. Soon after setting up camp in her hospital room, I wrote on the white board by her bed all of Stella’s recorded weights, listed in sequential order with all dates provided. There were at least a dozen weights listed, painting a damned clear picture of her growth for all to see.

During our initial meeting with the resident assigned to be our point-person, I showed him her weight history, scrawled on the wall in smelly marker. He glanced at it and said, “Oh yeah, thanks, that’ll be so helpful.” I don’t think he or anyone else ever looked at it despite my pointing it out to several people, making sure they knew it was there. If they’d given this information just a moment or two of real attention, as they said they would, the misunderstanding about her weight gain and percentile drop would’ve been avoided.

To this day, I can’t help but wonder if a more appropriate course of treatment would’ve been to both try hypoallergenic formula and give the reflux meds a chance to kick in before resorting to an NG tube.  I wonder, if they’d realized that her weight was just a bit low and not in some perceived “danger zone,” would they have treated her differently? I try not to think about this too much. I try to focus on how great Stella’s growth has been and applaud the progress she’s made in drinking from the bottle, despite the presence of the tube. But on tough days, after a feeding where she takes only half a bottle, doubt creeps in where hope should be.

Blunder number 3

The final mistake was perhaps most upsetting. Upon our arrival, stool, blood and urine samples were collected and a mind-boggling array of tests were run in order to get a baseline of how she was doing before the switch the formula. We were shocked when the resident told us that no lactose was detected in her stool, which meant that there was no reason to suspect lactose intolerance. One week earlier, stool testing had shown high levels of lactose in her stool. It wasn’t being broken down, suggesting lactose intolerance, or more specifically, that damage to her intestines had inhibited her ability to break down lactose (this would be temporary lactose intolerance that goes away when the intestinal walls are allowed to heal). I asked him and the head doctor during rounds and on at least two other occasions, “So she’s not lactose intolerant? Are you SURE?” I just found it hard to believe. But they kept telling us that the test was indeed negative so, while they couldn’t be 100% sure, they had no reason to believe she was lactose intolerant.

Because of this, we didn’t see a gastroenterologist during our stay, even though one of the main motivations for being admitted was to speed up the process of meeting with GI and getting to the bottom of whatever was bothering Stella.

You can probably guess what happened next. A few hours before we checked out of the hospital, we met with a very attentive doctor, Lindsay Fox, who ruly seemed to empathize with us and care about Stella. We shared with her all our concerns and points of confusion, and she actually listened. I mean, you could tell. You could feel in your heart that she really LISTENED. And then, because she actually heard what we had to say, she took decisive and thoughtful action.

After our talk, she reviewed all of Stella’s test results and discovered that her stool testing did indeed show a high reading for lactose, suggesting lactose intolerance! The computer program usually highlights abnormal values, but for some reason, failed to do so with Stella’s results. The normal reading for this test was .5, and Stella’s reading was .75. The doctor confirmed this when she called to talk to a GI doctor about Stella. The doctors had relied solely on the computer to interpret the results of her tests. This is perhaps not surprising or offputting. And hindsight is 20/20. However, when a specific result comes back and is surprising in some way or conflicts with another recent test result, and when the patient’s parents constantly question you about the result, it probably makes sense to take a closer look.

When the round of results came back, in addition to getting the surprising news that lactose intolerance was not an issue, we were told that the only abnormal reading was the presence of fatty acids, which meant that Stella had not broken them down. This had been mentioned to us, but then completely dismissed as if of little to no importance, mainly because there were no other red flags (as they’d missed the abnormal lactose  or “reducing substances” reading). They didn’t know why fatty acids were passing through, and didn’t suggest any further action. Thankfully, Dr. Fox thought about how we could investigate this further. So right before we left, she ordered blood testing to look at certain vitamin levels. I don’t understand the full details, but low levels of specific vitamins would give us some insight into whether fatty acids were being absorbed adequately. Dr. Fox also wrote an order for follow-up stool sampling, so that we could see if the switch to Elecare had helped address the malabsorption issues (answer: yes, it did).

I can’t tell you how much it meant to get this type of attention and follow-through. It’s no excuse, but my theory is that because Stella looked and acted pretty happy and healthy, she wasn’t a high priority. I did the best I could in being an advocate for her, but looking back, I wish I had pushed people even more. It didn’t help that we were so exhausted, waking up every three hours to try and feed her by bottle and then, when she didn’t take enough, to have to wait for someone to come in and help us give her the rest via the tube.

Children’s called their mode of operation “team medicine,” as if it were a positive, collaborative approach. But what it really meant, in our actual, hour-to-hour experience, was that you rarely see the same doctors or residents twice. Rarely was anyone on the same page. If they were truly a team, every new doctor or nurse that we saw would’ve been totally up to speed on Stella’s story and they wouldn’t have contradicted each other constantly. I would’ve have had to explain the same concerns or ask the same questions over and over. It was maddening at times. There we were, our precious baby girl now with a tube up her nose based on our trust that they knew what they were doing, and they were undermining that trust at just about every turn. I think that our experience in the hospital helps explain why to this day we remain fearful and skeptical of the tube. There’s a part of us that wonders if it was really the right thing to do.

The hospital stay is in the past, of course. We are moving forward! Stella is having a bit of a rough day but we know she will turn it around again. We’ll see her pediatrician tomorrow, and hopefully we’ll have another round of cranial osteopathy on Saturday. Stella has a huge team of talented doctors and other practitioners behind her. With their help, we will reach the tube-free promiseland. And soon!

A memory from our hospital stay

During our stay at Children’s, blood, stool and urine samples were taken and tested for literally dozens and dozens of things. Dr. Lindsay Fox was kind enough to review the findings with us, and she couldn’t help but wonder aloud about one of the results.

With a gentle but quizzical look on her face, Dr. Fox said, “I’m not sure why, and it’s really nothing to worry about at this point, but Stella’s triglycerides are pretty high.”

I was quite surprised and said something like, “Wow, that’s so strange! Why on earth would that be?”

Cody raised his eyebrows at me and asked, “Really? You don’t know why?”

I just stared at him with a perplexed and expectant expression, as he’d obviously figured it out and couldn’t wait to tell me why her triglycerides were high.

“It’s all the bacon you’ve been eating!”

Dr. Fox gave me a sympathetic look. “Well she has to be able to eat something!”

Cody was right. Because I’d been off dairy, I’d turned to bacon for solace. Cody had been frying it up for me in a desperate attempt to get me to eat. (He’d also fry eggs in the bacon fat and try to get me to eat those too.) As I explained previously, anxiety took my appetite away almost completely. Bacon and Kettle Chips were the only foods I could swallow without gagging.

Of course, Stella is now on formula and not breastmilk. I’m guessing her arteries are quite relieved.