weaning

Tube-free Stella: Days 9, 10 and 11

Posted on by amberhj

On a roll.

On a roll.

Stella is doing well. She is teething, however, which is throwing us all for a drool-covered loop. I can feel the bumps, the beginnings of teeth, in her gums. She cries with a bit more intensity and more often, gnaws on Sophie like she’s made of candy, and while she is still her usual energetic self, she seems to get cranky and tired more frequently.

Wednesday, Day 9, was fine. She ate seven times, we think, which is great. However, I began to feel worry rise up again for some reason. And a bit of anger. I figured it was because the reality of Stella losing weight was sinking in, and even though I’d been warned about it, the knowledge made me uneasy. Then I discovered another possible explanation. I realize that this is far too much information, but my period is back after a 15-month hiatus. Ouch. I have PMS. Stella is teething. There you go. Fun times for the Johnson family.

Thursday, Day 10, was better. Stella set a new record for the amount she took from the bottle, about 675 (not that we are keeping exact track–I swear we are not!). Cody made a big discovery. If you offer her the bottle an hour after she eats, she’ll usually take more. We clearly need to offer her the bottle more often–any time she is fussy. To at least give her the opportunity to take more. If she says no, that’s fine.

Today, Day 11, has been a ridiculous rollercoaster of emotions. Stella set yet another record for bottle intake–more than 700 mls! And the day ain’t over yet. However, we had an appointment with her pediatrician today, and let’s just say it was a “lowlight.” (It was for me, anyway–Cody didn’t think it was as horrible.) We were so happy to see that she gained one ounce since last Friday, because we’d been told by two expert sources that babies can lose a bit of weight when weaning. But my heart dropped when I saw that her doctor seemed concerned and eager to get her gaining more right away.

I really like Stella’s doctor. He’s pretty easygoing and I know he only wants what he believes is best for Stella’s health and development, but I have to say that today’s appointment really, really brought me down. As we told him, she’s been eating more and more. Making lots of progress. I told him, as I had before, that it was explained to us that she could lose a little weight then turn it around in three to four weeks as she adjusts. He just smiled and said nothing in response to this. My interpretation of that silence, besides the super awkwardness, was that he is clearly not in agreement. Clearly, he doesn’t have the faith in Stella that we do. In her ability to know what she needs. Her ability to pull through this and eat like a mo fo. I had this unshakable feeling that she was doing so well, but after today’s appointment my old nemesis worry had his hands pressed down on my chest and I had to stop and take more than a few deep breaths to shake him off.

To his credit, her doctor is very collaborative with us. After seeing her weight, he asked, “So what should we do?” I immediately answered, “Give her another week.” I thought it was obvious: give her more time and she’ll start gaining more weight. He had quite another opinion. (Remember, while on the tube and in general, he wanted her to gain an ounce a day.) After looking her over, he recommended that Stella try 30-calorie-per-ounce formula, a jump up from her 24-calorie-per-ounce formula. (Typically, breastmilk and formula have 20 calories per ounce.) Thankfully, he only suggested it as something to consider–he didn’t present it as any kind of mandate. I said that I’d like to hold off on any changes for at least the next week because I believe Stella can do this on her own.

After the appointment, I grew more and more upset about it. It didn’t make sense to me, right as her intake is climbing, to give her such a dense formula that could throw her off and discourage continued increase in her volume of intake. We need to let her learn how to eat more, to want to take in more calories, instead of sneaking them into her. On the other hand, I suppose it’s good to know that this calorie increase is an option that we can turn to if need be, rather than the tube. But deep down in my heart, soul, gallbladder and knee caps, I don’t think such measures are or will ever be necessary. I believe that she can do this. That she will, very soon, eat enough to drive perfectly acceptable, even exceptional!, growth. That she will even be able to transition to the standard 20-calorie-per-ounce formula concentration. Mark my words.

After Stella’s appointment, I spoke with her occupational therapist, and was definitely uplifted. She believes that Stella can do this, and that her progress is great. However, I did detect perhaps some doubt. Perhaps? I’m not sure. She says letting Stella go one more week makes sense. I wanted to hear more flexibility. More rock-solid belief.  “One more week” feels like a lot of pressure! Too much pressure. Too little time. It’s not fair to Stella, who has come so far. Besides, the Austrian doctor said that Stella should have up to four weeks without the tube before her weight stabilizes and starts to go up. I think that Stella should be granted four weeks by all parties involved, because, well, 1.) it seems only right to give her plenty of time to adjust to such a major change in biorhythms before pushing unnatural interventions upon her, 2.) At the five-month mark, she is in the 50th percentile for weight and height which is exactly where she was at birth, and 3.) most importantly, she is showing progress and we need to let her continue it. Luckily, the thing is this: I am her advocate and guardian. I AM STELLA’S MOTHER. So guess what? Stella will be given four weeks to show she can do this, even if I have to get second, third and fourth opinions–whatever it takes.

It makes me angry to think that interventions  like tubes are pushed on babies like Stella just because they aren’t gaining weight on a robot-like trajectory. Because they are not given the time to adjust and find their own rhythm. It reminds me of how interventions are pushed on women during their babies’ births, as if women don’t have millions of years of knowledge about birth built right into their bodies. I am guessing that there are babies out there who have become completely reliant on NG or even G tubes, their quality of life greatly diminished, only because they were never given the chance to prove that they could do it on their own. Never given the time to allow their little bodies to adapt. Yes, some babies and children absolutely need them for survival. But I get the strong feeling that there are also many who have them but do not truly need them. The thought infuriates me, and there is no way in hell Stella will be joining their ranks. Not on my watch. Especially not with this red-alert level of PMS. Watch out, naysayers. Duck and cover, non-believers. You’re about to get served.

P.S.  I can’t wait to say, “I told you so.”

P.P.S. I am so fired up that it took superhuman restraint to not riddle this post with curse words.

P.P.P.S. Screw it. Stella will turn this around within four weeks of the tube coming out and anyone who doesn’t believe that can kiss my ass. Stella can do this. Any other idea on the subject is bullshit. The end.

Tube-free Stella: Day 8

Posted on by amberhj

Stella finished four bottles today! I believe it was her best day, in terms of how much she ate, since the tube came out.

I weighed her today and it appears she’s lost three ounces since Friday, and weight loss isn’t something a new mom likes to see, but I am truly not worried. Her eating is improving and I have no doubt that she will get to where she needs to be, and soon. Actually, she is where she needs to be right now. It’s a period of transition. She is not used to feeling so much hunger, or driving her own intake. Stella is doing a fantastic job adjusting to a whole new paradigm!

Tube-free Stella: Days 6 and 7

Posted on by amberhj

Weaning continues to go well! It’s hard to believe that the tube has been gone for one week. Though I must say, we’ve quickly gotten used to life without it–even our old nemesis, worry, is fading a bit each day. We look at pictures of her with the tube and marvel at what we’ve all been through.

Stella is very vocal these days. Her hunger cues are becoming more clear, and somehow, more adorable. The main cue is a soft, high-pitched whimpering with a furrowed brow. Though, sometimes it’s loud, disgruntled yelling and angry, crunched eyebrows. I guess it depends on how hungry and/or tired she is.

Today, she polished off two bottles and was sucking on the empty nipple! Her other feedings went well overall. Sometimes she still shows a little resistance, but usually only when she’s tired. In those cases, we offer it to her, she refuses, so we put the bottle down, play or just hang out until she offers more cues, then offer the bottle again. At most of her feedings, she takes right to the bottle. And we were surprised, a couple of times, by how soon she wanted to eat again following a feeding. We see it as a very good sign!

She has been sleeping through the night, for a good nine to ten hours. Actually, she’s been doing this for a while. But now, without the tube, we don’t have to wake up every three hours to load up the pump. We get to enjoy it! My brain is slowly settling down, allowing me to fall asleep a bit easier. The wisdom and support I’ve been receiving from Robin and Marguerite has made a huge difference in terms of my ability to minimize and deal with worry about Stella’s intake. I had my first acupuncture treatment ever today, and I’m hoping that will also help calm my nerves and restore my body’s reserves–it’s still a bit depleted from feeding anxiety and childbirth.

Stella is thriving. She is a joy to be around. We just feel so incredibly lucky. I suppose this whole ordeal has somehow helped us appreciate her all the more.

Tube-free Stella: Days 4 and 5

Posted on by amberhj

Stella’s appointment with her pediatrician went well yesterday. She weighed in at 14 pounds, 13 ounces. He said that she looks good and will see her in a week. He is optimistic and doesn’t even think she will lose any weight.

Still, I confess that I have been worried. Stella has eaten “only” about 5 times and taken in 410 mls today. I’m not supposed to count but with the numbers right there on the bottle, it seems impossible to avoid keeping a mental tally. The solution, I suppose, is to place no importance on the numbers. They just aren’t important right now.

I am in the midst of a major internal struggle. And my state of mind affects Stella. So I sat down just now and asked myself, “How can I stop worrying? What can I tell myself to shut down my negative, fearful internal voice and pump up the positive, hopeful, joyful voice?”

Well…

  • Stella is happy, healthy and energetic. She smiles a lot. She’s rolling like crazy. She is giving me every indication that she is more than fine.
  • Dr. Devorah Steinecker, Dr. Numrych, Robin Glass, Barb Schlick (new to team Stella, she is a dietician) and Dr. Marguerite Dunitz-Scheer, all medical professionals and/or renowned experts in the area of baby/childhood feeding issues, are very confident that she will resume normal eating and recover from her aversion. Honestly, what more than that could I possibly need to squash this worrying?
  • Stella has already made so much progress in the eating department. She’s shown that she can do this.
  • I have been warned that her weight gain my stop for a while or that she may lose a little weight. So a day like today is to be expected in the weaning process.
  • She could eat a lot more tomorrow. She could down a bunch of mls in an hour. She will eat more when she is ready. And it will likely be soon.
  • Stella is smart and capable of knowing what she needs and telling me just that.
  • It’s only been a few days since the tube came out. The tube was in for two months, and her aversion took three months to develop before that. Stella has just undergone a huge change and needs time to adjust.
  • In my heart, I know that she does NOT need the tube.
  • I have done everything I can for her. There is no point to the worry that I have been feeling. It won’t help Stella, it won’t improve the situation, so why do it?
  • Miracles happen every day and positive thinking encourages them.
  • You attract what you focus on. So I can focus on her successes, and help her have more of them.

In closing, I’ll share something Marguerite told me via email from Austria:

“All seems very well from my distant little eye. Keep up and enjoy life. Sometimes parents have been worrying for so long and so much that they find it hard not to have a target for worrying anymore. In such cases I say: buy a neurotic goldfish and try to get tied up about feeding it. Please stop trying to feed Stella at all. Just provide food, have it around and let her decide what and when and how much she wants.”

I may, in fact, buy a goldfish. Stella would probably enjoy seeing him swim. And it may serve to remind me of the incredible bits of wisdom that have been given to me by Robin Glass, Marguerite and Devorah. They all believe in Stella. So do I.

Tube-free Stella: Day 3

Posted on by amberhj

Stella is aptly named.

Today we received an effusive outpouring of support. From a stranger with whom we’d never spoken but who’d seen Stella with the tube and couldn’t stop gushing about how happy she was to see her without it. From two shop clerks whose eyes brightened at the sight of her tube-free face. And from our beloved Dr. Devorah, who helped Stella get to where she is and who today showered me with hugs and Stella with kisses. Robin Glass, Stella’s occupational therapist and an absolutely huge source of support and wisdom, emailed to check in, even though she doesn’t work on Thursdays. Joy is everywhere.

I know we’re not in the clear yet, but Stella is doing well.  She is happier than ever. We can’t help but feel celebratory. Already. There is still work to do, but it simply feels right. The worry and fear that held me in its grip is retreating, scurrying back to the dark quarters of the universe.

Tomorrow, we have an appointment with Stella’s pediatrician. When we last spoke over the phone, on the day Stella took out her tube, he said two or three tube-free weeks would be fine, and we’ll only be on day four when we see him. Still, I’m a little nervous and hope that his assessment of Stella is in line with ours.

That tube is not going back in. Not if I have anything to do with it!

Tube-free Stella: Day 2

Posted on by amberhj

Can’t sleep so I thought I’d write a quick update. Weaning seems to be going well. Stella is happy and eating pretty often. As is expected over the course of her complete transition from the tube to the bottle, her volume will increase over time. I am struggling to let go of my obsession with counting every milliliter she takes, despite strong encouragement from several camps to do so. While I’m still working on that, I am successfully ignoring the clock, so that’s a good step. My job is to watch for Stella’s hunger cues and feed her when she wants to eat. And I’m embracing this role! She is in charge of her intake, as she should be.

I consider it a great sign that on several occasions, she’ll whine due to hunger. Then I’ll show her the bottle, and she’ll stop whining and even smile. If I put the bottle out of sight, the whining begins again. The girl totally gets that food is good stuff. She is coming around.

Today, I learned the secret to rolling success for Stella: let her be naked for a while after a diaper change. As soon as the clothes come off, the rolling begins. It’s amazing! She has completely mastered back-to-belly rolling but is still working on belly-to-back rolling. She is close–just figuring out what to do with her arms (as am I half the time). Adding a touch of suspense is the ever-present possibility that she could poop or pee all over the place at any moment. Cody and I find this all incredibly entertaining. Who needs TV when you’ve got Stella?

I talked to Stella’s occupational therapist on the phone today and it was very affirming! Based on my account of Stella’s first day and a half without the tube, she confirmed my feeling that things were going well and addressed the minor worries and questions that lingered in my mind. Tomorrow, we’ll see Dr. Devorah for another session of Cranial Osteopathy. On Friday, we’ll visit her pediatrician. Other than that, we’re taking our walks, rolling around, reading books, listening to music, playing and enjoying our days free from the hassles, worries and snag-potential of the tube!

Speaking of our walks, I had the growing suspicion that Stella was becoming “The Tube Baby of Wallingford,” an adorable but medicalized mascot for this Seattle neighborhood. We enjoy a stroll or two every day, with Stella facing out in the Baby Bjorn and taking in the world around her, and along the way we see a lot of the same neighbors, clerks, walkers, joggers and baristas. Many seem taken with Stella and I had the feeling that she received some extra looks from some curious people because of the tube. It felt so good to visit our usual shops and see that people share in our excitement about the tube being gone.

We remain very optimistic. Focused on the mission at hand, but having fun, too. 

Thanks for following her progress. It means a lot to us. Stay tuned.

Tube-free Stella: Day 1

Posted on by amberhj

Taken just after the tube came out.

Taken just after the tube came out.

Stella is off and running. I am so proud of her. In short, she is responding well and our confidence is growing. She can do this.

It is expected that she will lose a little bit of weight. I am on strict instructions to NOT WORRY about how much she eats or when. To NOT PANIC if she goes a few hours without eating. That is the challenge. I am simply to trust her to know when she’s hungry and how much she needs. To know that she will tell me in her own way that she is okay–or if she’s not. This simple trust is a bit harder than it sounds, due to our scary experiences of a couple months ago.  But we are beyond all that now. I am ready and so is Stella. Her intake will increase as she adjusts.

The only remaining concern is her reflux and how much of an impact it has on her desire to eat. It definitely still bothers her sometimes. But I think she is comfortable enough to pull through it. I don’t think it will stop her.

This morning, we ventured over to Seattle Children’s Hospital for Stella’s occupational therapy appointment with Robin, who was incredibly helpful and reassuring as always. She is pretty central to this process and to Stella’s progress thus far. I am to call her tomorrow to check in. I feel very supported in this proces–by Robin, Stella’s pediatrician, and the Austrian doctor as well, who has been keeping in close email contact. It’s funny–the Austrian clinic’s approach to weaning is almost identical to what I’m hearing from Robin. It’s all coming together.

This is huge. The tube weaning process is no cake walk, but we are feeling good. Stella seems happy–even more so than usual.

As so many of you have already said, “Go, Stella, go!”

The tube is out. I repeat: The tube is OUT.

Posted on by amberhj

And we are leaving it out.

This weekend, I sent Stella’s pediatrician and occupational therapist an email outlining my concerns about the tube and research to back up those concerns. Today, they agreed to a tube-free “trial.” Her doctor said two to three weeks without the tube would be “low risk” given how healthy she is.

We will meet with her occupational therapist tomorrow, and see her pediatrician on Friday. I have been in contact with the Austrian feeding clinic, wired them the registration fee, and they will offer weaning guidance via email as well.

I’d intended on leaving the tube in tonight, and taking it out in the morning. But she yanked it most of the way out tonight, so we went with it. And let me tell you… her tube-free face was a sight for sore, exhausted eyes.

The plan is really quite simple. Feed Stella when she is hungry. When she TELLS me she’s hungry (with her whining). Give her no more than she wants to take. Don’t panic if she doesn’t take much. Wait for her to tell me she’s hungry again, whenever that is, and repeat.

Stella, the feeding reigns are in your precious little hands. Show ’em what you got.

The stubborn determination of hope

Posted on by amberhj

Good news. Stella is back to taking in about half of her daily calories from the bottle, just as she did before the recent regression.

However.

My feeling is that the tube is preventing her from recovering completely. I believe that it exacerbates her reflux and makes swallowing more difficult. I found and paid for two medical research papers that support my beliefs. I hope that she proves me wrong, and soon, but I am unconvinced that our current mode of treatment will enable Stella to return to 100% normal bottle feeding. I am ready to take urgent action. I am questioning the medical establishment and ready to try something else.

I learned about and have been in touch with a renowned feeding clinic in Austria. Their cold-turkey approach to tube weaning is radically different that what is practiced here in the states. They believe that the baby or child must drive their own intake, rather than the tube. They share my belief that tubes, over time, worsen aversions and lead to tube dependency. They have studied the topic for over 15 years and have a success rate of 92-95%, depending on the age group. The doctor who runs the feeding clinic told me that Stella’s age is ideal for weaning and that we may be able to achieve it through email coaching, rather than having to go all the way to Austria–although I am eager and willing to go to Pluto if that’s what it takes.

The drawback to this method, what is called the “Graz” approach, is simple. The babies and children treated may not gain weight for a month or two. I believe that Stella would be on the shorter of those timeframes, since she already takes half of her formula orally and the clinic treats many children who are 100% tube fed. Stella will be hungry and not fed until she asks for food. This may seem harsh to some, but I believe it makes sense. I believe that Stella, if able to have more control over her eating and freed from the discomfort and difficulties of the tube, would respond very well. But she would need some time to pull through once the tube is removed. Most doctors here are not willing to let a baby have low or no weight gain for any period of time, so the tube stays in. They, of course, have the babies’ best interests in mind, but they seem beholden to the tube and unaware of, or too willing to overlook, its detrimental effects in the name of weight gain. I believe that any short term weight gain delay would be more than made up for with the restoration of a healthy relationship with food and the resulting appropriate, baby-driven weight gain that would follow.

Stella’s life was never in danger. The tube was placed for therapeutic purposes, not just to help her gain weight. The tube was helpful in allowing Stella to say “no” and be heard, instead of constantly being force-fed, which must’ve been very traumatic for her. The tube took the fight away from eating. The tube has enabled her to make progress. But I believe that we have reached a point at which the tube’s negatives outweigh the positives. And I am ready to take bold action in the face of a lot of opposition in order to do what I believe is best for her.

Cody and I are going to consult with her occupational therapist and pediatrician on this. We will continue to bring Stella to a cranial osteopath. We are going to do some research into the Graz method and the Austrian clinic. And then we are going to decide how to proceed. Of course, in the meantime, we would love to see Stella down bottles left and right, thereby eliminating the need for tough decisions or new approaches.

Even on gut-wrenching days when Stella resists the bottle like it’s full of toxic waste, there is an incredibly wishful part of me that looks to the next bottle as a possible turning point. There is a clump of raw hope that sits smoldering in my chest like an ember in the darkness. It’s always there. And it’s going to light the way to a tube-free Stella.

The road to a tube-free Stella.

Posted on by amberhj

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!