Appointments

At six months, a weight is lifted.

Posted on by amberhj

Welcome to the ERP (Experience Rice cereal Project).

Welcome to the ERP (Experience Rice cereal Project).

Stella has been weighed dozens and dozens and dozens of times during her six months here on earth. More times than the average Orange County housewife–nevermind the average baby. Many more times than a parent can reasonably expect to endure while maintaining his or her sanity. For close to three months, we went to the pediatrician’s office weekly for official weigh-ins. She was weighed every three hours during our four-day stay at Children’s Hospital in November. I’ve weighed her at home, before and after nursing her, on a fancy rented scale that I turned to out of desperation in the the time before the tube when I was trying to figure out how much milk she was getting from me and what the hek was bothering her so much. Lately, every few days, I’ve popped her onto the cheap baby scale I bought when the tube came out. I suppose, technically, she was also weighed before birth, when I stepped on the scale at the start of each prenatal check-up.

At this rate, Stella and I will wind up with a majorly problematic focus on her weight for years to come. (“Stella, what did I tell you? Put down the broccoli and have a cupcake!”) And a weight obsession of any kind is just about the LAST THING I want for my precious girl.

So, it is with much relief and joy-bulation that I announce the good news: Stella Weigh-In Mania (SWIM) is officially over. Today, at Stella’s six-month “well child” check-up, after a full six weeks without the NG tube, she proved that we don’t need to worry anymore. No more weekly weight checks. Our only future appointment is for her nine-month “well child” visit. Hallelujah!

Things are looking up.

Things are looking up.

Needless to say, the appointment went VERY WELL. There was no stand-off between me and Dr. Numrych, as I’d feared might happen if the scale didn’t tip in our favor. She gained more weight than we expected. She’s growing longer (taller?) at a quick clip. And her head is more gigantic than ever. The subject matter at today’s check-up didn’t involve tubes or high-density formulas or other craziness aimed at helping her gain weight. It was refreshingly normal. Topics of discussion revolved around spoon feeding and baby-proofing. Here are her stats, including the dreaded percentiles:

  • 16 pounds, 8.5 ounces (between 50th  and 75th %)
  • 26.5 inches long (75th %)
  • 45.3 cm head circumference (+97th %)

After all we’ve been through, these numbers are worth celebrating. Even the god damned percentiles. Though, I hope that I can think about percentiles as often as I think about, say, checking my car’s oil (every couple of years–sorry, dad, I’ll get on that).

Necessary but not cause for celebration were Stella’s shots. And there were many. She handled FOUR SHOTS (plus an oral rota virus vaccine) like a champ. One was an optional flu shot. Scores of people in my “circles” have been dropped like bad habits by the flu. Otherwise I probably wouldn’t have allowed her to receive so many shots at once. Right after the nurse gave her the three standard shots, Cody realized that they’d forgotten the flu shot. So they had to go tromp through the halls to retrieve it, then come back and inject her again, after she’d calmed down (with the help of a pacifier) from the initial three. Well, oddly enough, when stuck for the fourth time, she didn’t cry. In fact, I am not even sure she noticed the shot at all. Perhaps her chubby little thighs were in shock.

All dressed up in her Wednesday best.

All dressed up in her Wednesday best.

I think Cody and I were in shock upon seeing the number on that scale. We’re always a bit quiet and tense right before a weigh-in. In that moment, I cease breathing and put all emotions on hold. Because it always feels like there’s so much riding on it. Upon entering the doctor’s office, I am mute and/or annoyed until I see or hear that number. Cody and I practically did chest bumps and high fives when we heard “sixteen p0unds eight and a half ounces” announced with appropriate enthusiasm by the nurse. I honestly wanted to bust out with a rendition of Public Enemy’s “Bring the Noise”–something Cody and I do quite well. “Black is back, all in, we’re gonna win, check it out, yeah y’all c’mon, here we go again, turn it up! Bring the noise!” I think Stella would’ve enjoyed it. Maybe next time.

A freakout. A rant. And endless gratitude.

Posted on by amberhj

Don't worry, it's just prunes.

Don't worry, it's just prunes.

Early this afternoon, Stella got upset and took only 100 mls from the bottle. It was really weird. All my fears and worries came rushing back.

Granted, she took around 180 before and after that. But what a scare. I was so upset, I yelled at Cody like a maniac. He was holding her because he wanted to try feeding her again, after I told him what had happened and how she didn’t seem to want to eat and was getting fussy about it, but all she did was cry and cry so finally I screamed from the other room, “JUST GIVE HER THE PACIFIER!!!” The idea of trying to feed her when she clearly did not want to sent up an army of angry red flags. Forcing it never works–it makes her want to eat less. Not that he was really forcing it, but he was nearing that old territory in my mind and I could not handle it.

It will take a while for me to really accept that she will not always take what I expect and that this is okay.

In the background, I am feeling nervous about her six-month “well child” visit with her pediatrician. He hasn’t seemed to have fully understood how well she is doing. How huge it was for her to start enjoying eating and to not only not lose weight but to start to gain a decent amount after just three weeks without the tube. I mean, it doesn’t really matter what he thinks. And there is no chance of Stella the Tube Girl II showing in theaters–ever. That sequel will never be made. But still. The last couple of times I’ve left his office feeling pretty crestfallen. Like the feeling of letdown when you go on a great first date, then have a terrible second date. You just feel so deflated. The neurotic me (well, maybe that just is me) is afraid that if Stella doesn’t gain an insane amount of weight, he’ll act all concerned and I’ll get all riled up and strongly disagree with him and stand my ground but then secretly, after we leave, I will worry about everything he said and fall apart and it will be unpleasant for all.

So I weighed her today. It was totally unnecessary and probably counter-productive. But I just had to. She weighed in at 15 pounds, 14.5 ounces. So by our count, she’s gained about 8 ounces in ten days. It’s great! Of course, I hear the doctor’s voice in the background saying how he likes to see an ounce a day. But from what I understand, around this age, the rate of gain slows down naturally. And really, she’s happy and healthy and clearly gaining an appropriate amount of weight so who cares!

She’s a week away from her 6-month birthday and when she hits 16 pounds, and clearly she will surpass it by several ounces, she will be above the 50th percentile curve, I think. She was in the 50th when she was born. I will remind the good doctor of this if need be. Have I told you how much I hate percentiles? They drive me nuts. I think that unless a baby is in trouble, no parent should even know the percentile. What’s the point? There are chubba-butt babies that are completely off the charts and their parents know they are big babies. There are babies that are petite–I have a feeling their parents know they are small having looked at them every moment of every day–and very content in the 3rd percentile. And the vast majority of these babies, all over the spectrum, are healthy. So what’s with the percentile obsession? The growth percentile calculator on BabyCenter says, “See how your child’s growth compares.” So there we go, comparing our babies with their peers right out of the womb based on some number that, for the most part, means nothing. I doubt my parents knew what height/weight percentile my sisters and I were in. And I KNOW they didn’t chart our head circumferences! They just knew we were eating, pooping, sleeping and, overall, happy and healthy. That was enough! And it should be for today’s parents. Rant over.

Yesterday’s occupational therapy appointment went very well. Stella ate beforehand, so Robin didn’t get to see how fabulously she eats, but we were able to discuss her amazing progress, affirm the whole journey, and get some questions answered. We got some great tips on how to encourage her to get more comfortable on her tummy and with rolling and sitting up. We learned that we should definitely proceed with spoon feeding full steam ahead and not worry about it adversely affecting bottle feeding. We have some other decisions to make–like when to switch to 20-calorie-per-ounce formula and whether we want to see if the baby food in the bottle really is making it more appealing or if it was just coincidence. I think Cody and I are reticent to switch anything up just yet, but we probably will at least switch her to 20-calorie-per-ounce concentration, as it is the standard for breast milk and formula and may better allow Stella to regulate her intake.

I gave Robin a “thank you” card and photo to remember Stella by–one in which she is clutching a bottle the way Gollum held the ring. I remember our first meeting with her well. We were so thrilled to be there. To finally be getting the help we needed, from the best of the best. (Robin is a renowned feeding specialist.) I’d been trying so hard to get Stella to eat for at least a month at that point and I was falling apart. No one had been able to figure out what was wrong, and they didn’t see the daily struggle and didn’t have the sense of urgency that was needed to move things forward. I felt so alone and hopeless and worn down. During that appointment Robin said with such confidence, “I’m going to see you through this.” And she did. As I reminded her in the card, she listened to me cry and rant. She calmed me down, educated me and backed me up. I am forever grateful.

And that reminds me of all of the incredible people who helped us weather the storm…

Barbara Hescock, my mother, who stayed with us for almost three whole weeks and spent Thanksgiving cooking for three, two of them severely depressed, in our crappy kitchen instead of her new wonderful one with a crowd of eager company as she’d planned long before… she arrived during our stay at Children’s and got me through the worst days of my life, helped me rise to the challenge of dealing with the difficulties of the tube while feeding me (everything made from SCRATCH–even tomato sauce–with so much love) so I didn’t disappear just as she so graciously did during Stella’s first weeks–she was the hands behind my hands, just what every new mom truly needs–and who even tolerated me snapping at her a couple times without holding it against me

Robin Glass, MS, OTR, IBCLC, occupational therapist, who, as I just mentioned, was our rock and provider of wisdom, sanity and hope!

Devorah Steinecker, MD, cranial osteopath who treated Stella about a dozen times and helped to greatly decrease Stella’s reflux and aversion, who was 100% confident that Stella would get better and became one of our biggest supporters when we removed the tube, a time when we really needed positive voices around us

Sarah Tyack, RN, lactation consultant with whom I met several times who helped identify Stella’s reflux, a major breakthrough, and who saw me at my worst and instead of judging me, connected me with the help I needed to cope and the help Stella needed to recover

Janet Whalley, RN, co-author of Pregnancy, Childbirth, and the Newborn: The Complete Guide and lactation consultant that I met with several times who became a mentor and person to call when I got worried, who was always so understanding and concerned about us and provided any and all ideas and information she had

Ann Keppler, RN, co-author of Pregnancy, Childbirth, and the Newborn: The Complete Guide and very well known in Seattle for her mindblowingly helpful First Weeks seminars, she sent me the most amazingly supportive and helpful email in response to my random, frantic email to her

Judy Herrigel, RN, founder of First Weeks and longtime lactaction consultant to whom I reached and talked to about Stella’s issues and who expressed much compassion and understanding

Dr. Trish Raymer, one of Seattle’s VERY BEST family practitioners–my doctor and was Stella’s doctor until we switched to Numrych who had instant access to all of Stella’s lab results, appointment info, etc. at Children’s Hospital which made our lives easier–who got Stella in to see Robin and who admitted us to Children’s when she saw that we needed urgent help, and who was always so delighted to see Stella that it warmed my heart even on my soul’s coldest days

Dr. Thomas Numrych, Stella’s current pediatrician, who returns my emails and calls and spent a lot of time talking to me during our toughest days… I have been complaining about him a bit,sure, but I think he’s a good person and good doctor

Dr. Marguerite Dunitz-Scheer, director of the tube weaning clinic in Graz, Austria who always knew that Stella could do this and who helped convince me to let go of at least some of my fear

Kathleen Kendall-Tackett, Ph.D., IBCLC, a breastfeeding expert—whom I’d heard talk about postpartum depression and breastfeeding issues in a podcast and emailed out of the blue–who talked to me for quite a while on the phone trying to troubleshoot our issues and provide encouragement

Dr. Jessica Bloom, cousin who just so happens to be a pediatrician, who talked me down from ledges and watched Stella for a whole day (after all, if you can’t let a relative who is a pediatrician watch your child, then you are hopeless!), when I was really low and about to starve to death from anxiety

Barbara Reilly, a wonderful, funny, compassionate friend who provided much needed food on multiple occasions and insisted on watching Stella, allowing us to get dressed up and go out for five whole hours!

Susie Estok, a fellow writer and kick-ass friend who watched Stella while I got my hair cut then spent the day with us, making me feel a lot less lonely and lot more hopeful

Maureen Devine, a friend and co-worker with the most amazing heart who stepped up to provide nourishment and support

Rocio Carballo, a mom who was in the same boat with the same fears who contacted me through the blog… we were able to relate and helped pick each other up when we were down and I’m so happy to say that her precious Diego is also tube-free and eating like a champ!

Dr. Stephanie Farrell, an engineer and professor that I don’t know at all and emailed out of the blue about her experiences with tube weaning her own daughter and who sent me the most supportive, wonderful reply

Trish Norton, a mom (to whom I was connected through Robin Glass) who went through very similar struggles with her daughter Libby and who took time to talk to me, a complete stranger, honestly and openly about her experiences and how she got through it, making me feel so much more normal and less crazy and alone

I will always think of these people with such fondness and gratitude. When Stella was not gaining weight, before we had any idea of what was bothering her, that growth percentile curve felt like a cliff. We were careening around a narrow corner and about to fall into a deep, dark abyss when one by one, Team Stella stepped into our lives, and gently but firmly pulled us away from the edge.

Yes, these people are Team Stella, forever!

Thank you.

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 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 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!

Hold please.

Posted on by amberhj

Stella finds her thumb.

Stella finds her thumb.

This was a day when we didn’t fall behind, or get ahead. For the most part, we were simply on hold. And that was okay. Stella did have a first, and she was delightful company as usual.

Stella’s first appointment, with our occupational therapist, was cancelled. I was not disappointed to miss it,  as we’ve been seeing progress and therefore want to continue with the strategies that are working. I received another cancellation call from Dr. Devorah’s office. The news that Stella’s cranial osteopathy appointment will need to be moved from tomorrow to next week left me feeling a bit crestfallen. My hope is that they will fit us in on Monday, or as soon as possible.

Her ultrasound appointment was not cancelled and went smoothly. Somewhat concerning to me was how well she handled several hours without eating–we were given strict instructions to ensure that she had an empty stomach. She’s definitely come along in the hunger department. Having self-limited her own intake for weeks, before the tube, she’d happily go for long stretches of time without eating (despite my best efforts). These days, she usually does get hungry every three to four hours. So I’m trying not to worry about it.

While in the Radiology waiting area at Children’s, a woman struck up a conversation with me. She remarked on Stella’s cuteness, and politely inquired about why Stella has a tube. I explained the whole situation, and she nodded knowingly. Her son had severe reflux that wasn’t treated until he was nine months old! He only weighed ten pounds at that age, and therefore required a tube for a long time. Another woman, sitting across the room, piped in, “That’s exactly what’s happening with my son!” He is four months old and his doctor only just recently diagnosed and began treating his reflux. She described the enormous struggle involved with feeding him, and it was as if she were telling Stella’s story. He was a lot smaller than Stella. He did not have a tube. Though I did wonder about how they were treating his aversion, I didn’t pry. We simply discussed our shared frustrations and took comfort in talking to someone who really “got it.” Both women said they were impressed with how healthy and big Stella looked, which made me feel great.

All in all, Stella did okay with the bottle today. Just okay. She ate with less enthusiasm. In fact, she seemed a bit bored, which made me wonder if I’d made the formula too thick and therefore too slow. On the bright side, she wasn’t upset about eating. She was relaxed. And she took about half a bottle while we were at Children’s–the most she’s taken away from home–even though she kept getting distracted by her surroundings. She stopped eating a couple of times, then continued, which is always encouraging. But her head swiveled as she ate and I had to move the bottle in an attempt to keep the feeding going. I could almost hear her thoughts unfolding one right after the other: “Whoa, what was that noise? Who’s that funny-looking guy? What’s that shiny thing in the corner? They call that a gift shop?”

While the ultrasound technician stepped out of the room, Stella did something with much enthusiasm, for the first time that I’ve seen. She sucked her thumb! That’s right. Stella has discovered her thumb and she loves it. Her Dad was a thumbsucker (if there was a hall of fame, he’d be in it) and it looks like she’ll be following in his footsteps. I captured this milestone on my cell phone camera. As happens so many times with Stella, I couldn’t stop smiling. Can’t wait to see what she does tomorrow.

Lucky 14?

Posted on by amberhj

Stella takes a step forward...

Stella takes a step forward...

It’s great that my appetite is back. Because I have some words to eat. In my last post, regarding Friday’s doctor appointment and weigh-in, I stated, “I’m certain that she won’t have gained the ounce per day that the doctor would prefer to see.” Over the two previous weeks, she’d gained ten ounces total, or five ounces a week. So I expected more of the same, since we’d only increased her intake by about 20 mls a day. It had been exactly one week since her last appointment, so a good gain would’ve been seven ounces. Well, Stella somehow managed to gain 11 ounces! She now weighs 14 pounds! We were amazed and encouraged.

Her doctor said that this type of weight gain suggests that there’s no obstruction or other structural problem. The food is passing through her system and being digested and utilized for growth. (Though, Stella will still have an abdominal ultrasound on Wednesday, just to be sure.) As her reflux and cow’s milk protein intolerance have been treated, the good doctor believes that this is now strictly a feeding issue that will resolve in time.

Friday’s second appointment, our foray into Cranial Osteopathy, was fascinating and uplifting. We are now seeing Dr. Devorah Steinecker, a holistic pediatrician–an M.D. with additional training in neurology, developmental pediatrics and pediatric osteopathy.  She was incredibly optimistic about Stella’s condition and totally confident in her ability to resolve Stella’s feeding issue.

I learned so much at this appointment, about an area of medicine I didn’t even know existed until a few days ago. My understanding is very limited, but in a nutshell, Dr. Steinecker believes that Stella’s issues were caused or exacerbated by compression to the skull that occurred during birth. An intense, 32-hour labor and the transverse (sideways)  positioning of Stella’s head put a ton of extra stress on her skull, focused mainly on the the occipital (rear) bone (which is composed of four parts in newborns), where the nerves controlling swallowing, appetite and digestion are located. The plates of the skull are designed to move and compress during birth, but Stella was subjected to an extreme amount of pressure, resulting in more compression of the bones and nerves in that area. Through gentle, hands-on manipulation, Dr. Steinecker can make tiny adjustments to the bones’ positioning, restoring balance, relieving tension, and freeing those nerves to function properly. That’s just my basic, quasi-ignorant understanding. If you have a question, please leave it in a comment and I’ll do my best!

We went back to Dr. Steinecker for a second appointment the next day, on Saturday evening, to speed things along. I’m almost afraid to say this, but we may already be seeing improvement. On the way home from yesterday’s appointment, Stella seemed hungry so I offered her the bottle. She took 50 mls while in her carseat, as we were driving. She didn’t fight the bottle, and gulped it down quickly and comfortably. This is pretty much unheard of. To feed Stella, I have to hold her in my right arm while standing and performing deep squats to provide her with a calming, steady bouncing motion while facing Christmas lights or another mesmerizing visual distraction. Later that evening, she took 100 mls, easily. As you may recall, her first bottle of the day is “always the worst” (more words to eat?). But this morning, she took an entire 115-milliliter bottle in five minutes. At her second bottle, she took 85. Holy crap.

Of course, other efforts may help explain this apparent upswing in bottle feeding. The new ratio of formula to thickener (one packet of Simply Thick to eight ounces of formula) along use of a number three Dr. Brown’s brand nipple (instead of a number two) seems to be a great combination for Stella. We don’t want to get ahead of ourselves, and we anticipate more ups and downs, but we are seeing progress!

Last night, it snowed in Seattle. The first flakes fell as we left her appointment with Dr. Steinecker. Snow always sparks excitement in me, probably due to giddy memories of sledding and snow days, crucial parts of any east coast upbringing. At the same time, snow makes the world seem more peaceful. At that moment, as we walked outside and admired the flurry illuminated in the street light, all seemed right in the world. Tube and all. There was, and is, a sense that the tube will be gone soon. When Stella is ready.

Fuel

Posted on by amberhj

Tough day.

The tube came out AGAIN. While replacing the initial, temporary tape job, the tube was jostled quite a bit and Stella had the worst screaming fit ever. It was heartbreaking. I have to dig deep to unearth any positives at the moment. But they are there. Here goes…

I’m thankful that Stella and I were able to fit in our daily walk to Fuel Coffee. As usual, Stella watched intently as Noah made my tall hazelnut latte. I got my glazed Mighty O donut to go with it. We were able to enjoy some fresh air and even, believe it or not, a bit of sunshine. 

Stella took almost twice as much from the bottle today as she did yesterday. Granted, yesterday saw a very low total, but we can be glad that she rebounded. Hopefully, her intake will continue climbing.

While Stella did complain quite a bit at the beginning of her bottle feedings, she did get through it, relax and accept the bottle. I put thickened formula in all but one of her bottles. We’re going to give it at least one more day to see how it goes before we judge whether thickening is the way to go.

As usual, Stella was a very happy girl for the vast majority of the day. A total delight. She really only got cranky or upset today for obvious reasons: tiredness, hunger, and the disaster with the tape job on the tube during which we ALL lost our cool.

And the bottom line, when I’m really desperate to find some glimmer of hope? She is still eating from the bottle. It may not be as much as we would like, but she IS eating. And we can build on that.

I’ll try to make a habit of taking inventory of any and all positives. It’s the fuel that keeps us going on days like today. (Note the attempt to tie in “fuel” again as the theme of the post. I’m trying, people.)

Tomorrow, we have her weekly doctor’s appointment. Mainly, it’s a weigh-in. I’m certain that she won’t have gained the ounce per day that the doctor would prefer to see. We’re finding it so hard to fit in eight feedings. We like to give her a chance to be hungry instead of solely using the clock as our guide and feeding her every three hours. And because we’re so exhausted at night, sometimes we wake up late for a feeding and that puts us behind before the day even starts. We may add a third nighttime pump feeding to get her more calories. We’ll see what the doctor says about her weight.

That’s not her only appointment for tomorrow. I’m excited to report that we will also see a doctor specializing in Cranial Osteopathy. Apparently, this doctor has successfully treated many babies for feeding issues. I’m eager to see what she can do for Stella!

Tomorrow is a new day. Here’s to all the positives and progress to come!