Dark day
Stella is refusing to eat again. We don’t know why. I will probably not post again until this changes. Please pray for her. Thank you.
NG tube
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!
How will we play this hand?
In between feedings and worrying about feedings, I was flipping around the airwaves when I briefly paused on a news show. I caught the end of a remembrance montage that honored some of the incredible people we lost in 2008. Randy Pausch was one of them.
If you haven’t seen his famous “Last Lecture,” I command you to go watch it RIGHT NOW. Whether you catch the long version he presented at Carnegie Mellon University, where he was a professor, or the short version that he shared on Oprah, you’ll be changed by it. I was.
Randy Pausch, a very loving husband and father of three little ones, was diagnosed with pancreatic cancer and given only months to live. With this lecture, which absolutely overflows with fatherly wisdom, humor, honesty, insight and an astoundingly positive attitude, he gives us all a great gift. Although it was initially presented under the title, “Really Achieving Your Childhood Dreams,” it’s truly a guide to living well, and not just that, but living joyfully in the face of obstacles and even gut-wrenching misfortune. I first saw his talk many months ago, and watched it again today. In light of the situation with Stella, his words had a whole new meaning. He gave me a good smack on the forehead, actually.
He reminded me that I must choose to be a Tigger instead of an Eeyore. To allow Stella to paint rockets and elevator doors and whatever else she want on the walls of her room, if someday she wants to. And to see brick walls merely as opportunities to show just how much I care about and want something.
“We can not change the hand we are dealt, just how we play the hand.” There are so many more amazing quotes from Randy’s lecture, but to me, that one pretty much says it all. When I scale this massive bit of wisdom down, it applies to every aspect of what we are going through. From our overall attitude as parents, to our view of Stella’s feeding aversion, to how we respond to an individual feeding that doesn’t go well.
Randy’s grace in the face of what amounts to a death sentence left me in awe, and allowed me to put our situation into perspective. The tube and Stella’s feeding issue are unexpected twists in our story. A bit scary at times, sure. But it’s nothing we can’t handle. The tube can’t stop us from having fun, being silly, reading Goodnight Moon until it’s seared in our brains, going on long, lovely walks, and loving and enjoying each other’s company like crazy. It’s just a brick wall that we are going to smash down. Then we’ll dance on the debris.
(Thank you, Randy.)
Fear
Stella took a step back today. But I keep telling myself that it’s okay. That it’s to be expected. Just part of the process. And her total bottle intake today, on a decidedly so-so day, is higher than what we saw on an average day just a few weeks ago.
Of course, we can’t help but feel let down and look eagerly toward her next upswing.
At her first feeding, the nipple clogged four times (the thickener is likely to blame). She wanted to eat, but only had so much patience. The fact that she went back to the bottle three times in one feeding (after three nipple changes) is encouraging. In the afternoon, I think her reflux was a major factor. I heard the telltale gurgles and gulping several times during the feeding, but she still managed to take 80 mls, which isn’t bad at all. This evening, after a very, very long nap, she “should” have been quite hungry but was fussy and only took 50 mls. We decided to skip the pump and try again with the bottle an hour later, at which time she took another 55, somewhat begrudgingly. After that, we had to give a bunch by pump as she’d fallen behind in terms of her caloric intake for the day.
It’s so perplexing to us how she can go from taking 135 mls in one feeding yesterday, to taking just 50 in one feeding today. While the overall trend is upward, it still feels like she’s all over the place, and the highs and lows are emotionally exhausting. I wanted to hurl the bottle across the room with all my might again this evening, but I didn’t. I guess I deserve a lame-ass pat on the back for that bit of restraint. *Overly dramatic sigh.*
Underneath all the pep talks and tears and thrown bottles and every other reaction and coping mechanism under our family’s sun is big fat ugly old FEAR. In just a couple of weeks, she’ll have had the NG tube for two whole calendar months. There’s a little voice inside my head, a tiny neurotic bastard, who keeps asking undermining questions and making incredibly stupid statements such as,”Shouldn’t she be further along by now?” “Wow, she really doesn’t want to eat this morning. We’re screwed.” “What if she never takes enough by bottle and has to have one of those surgically inserted tubes that goes right into your stomach?” “Is the NG tube making her reflux and swallowing worse and will it eventually ruin everything?” “That feeding didn’t go well at all–maybe she’s finally had it!”
The truth is that when I really stop and think about her feeding issue, I get very, very scared. So afraid that, at times, I can barely stand it. It’s physically uncomfortable. It takes the form of that deep pain in the pit of my stomach during some feedings and a stubbornly low appetite, which is so not me.
When I was pregnant with Stella, fear completely overtook me on more than one occasion. I worried that something I’d eaten or applied to my skin would hurt her. I also fell down our icy front steps one morning and proceeded to bawl my eyes out during a meeting at work. Yup. The shred of a thought of an inkling of a possibility of harm coming to her (combined with all the hormones) was too much to handle. Too many times, I became very concerned because I had not felt her kick in what felt like a reasonable time. But I swear to you that whenever I became really, really worried about not having felt her move, I would tell Cody about it, and at that very moment she would dance on my kidneys. It was absolutely uncanny. With her incredibly timely kicks, she was telling me to chill the hell out. I got the feeling that she could sense my worry and wanted to ease it.
In a way, she does the same thing these days. Just when we’re feeling sickenly worried and downright discouraged about her eating, she’ll go and polish off an entire bottle. And voila! All hope is renewed and there is light and justice and peace in the world. Birds and angels sing, rainbows appear, and for at least a little while, I am neither scared nor worried. I am free of all that heaviness, and we dance lightly around the house like the silly fools we are.
We set ’em up. Stella knocks ’em down.
Another triumphant feeding! Daddy and Stella celebrate after Stella takes 135 mls from the bottle!
Cody, Stella and I had a relaxing holiday weekend. I’m sad that it’s over and that Cody will have to return to work tomorrow. He’s been working a lot, which has been tough. Just having him around makes me feel better, and Stella loves it, too.
When I get down, he helps pick me up, and vice versa. Of course, when feeding doesn’t go well, we both feel discouraged and can sometimes work together to find the positives and pull ourselves up together.
This weekend, we realized that our standards had really risen in regards to Stella’s eating. We found ourselves feeling bummed when she took “only” 70 to 80 mls. We had to step back and remind ourselves that not long ago, that was considered a good feeding!
Today is an interesting example. She had only four bottles because she slept so much, and because we gave her the usual two feedings via pump while she slept. The average number of mls she took per bottle was 111.75 (yes, we are that exact). Remember, her formula has 24 calories per ounce instead of the usual 20 calories per ounce, so she gets more calories with less volume–big feedings can really exacerbate reflux.
She complained a bit before her first feeding, but other than that, she accepted the bottle right away and was very comfortable while eating. Stella has come so very far! This whole feeding fiasco–or should I call it a “challenge” instead–has been an exercise in the power and importance of positive thinking. Slowly but surely, I’m learning.
Tonight, I returned the hospital grade breast pump that I rented two months ago. I was surprised by how emotional I got during this seemingly simple errand. I cried a lot and it really caught me off-guard. Then again, that pump and I, we spent so much time together. We worked so hard! We were side by side through the scariest times with Stella. When she didn’t want to eat and I thought her health was in serious danger and that it was my fault. When my milk supply was low because she wasn’t taking enough. When we had no idea what was going on with Stella and were desperate to get answers.
I tried. I really, really tried. Hundreds of ounces of breastmilk still sit in our freezer. Just can't bring myself to dump it. Too much effort and love went into making it. I'm wondering if I can donate it somewhere.
That huge, yellow pump became a fixture in our living room. It represented my long, last, and intense effort to continue breastfeeding Stella–and I suppose I had a hard time letting the pump go for that reason. Breastfeeding was what I wanted for her, and for me. I really miss the closeness that we enjoyed through breastfeeding. The proud and assured feeling that I was giving her the very best nutrition. The knowledge that I was nurturing her in such a direct and intimate way. I am grieving the loss of breastfeeding, though it’s not as sharp as when she had her first bottle of formula, or when I stopped pumping a couple of weeks ago. Even though formula truly helped Stella thrive by getting her comfortable and willing to eat, part of me really feels like Stella and I are missing out on something. However, toward the end of my time with this impressive piece of machinery, pumping was taking away more than it was giving us.
At the hospital, Stella was put on hypoallergenic formula “temporarily” to see how she’d do and to allow the doctors to do their assessment. (Of course, it didn’t turn out to be temporary, as stool testing showed that the switch helped Stella in many ways. I think that deep down, I actually knew that it would not be temporary, or at least I feared that would be the case.) I was pumping eight times a day even though it wasn’t clear if she’d ever safely be able to enjoy breastmilk again without jeopardizing her comfort and willingness to eat. I’d given up soy and dairy for the cause, which was difficult but wouldn’t have been as big a deal if anxiety wasn’t already beating the crap out of my appetite.
Feeding Stella with the bottle, then the tube/pump is time-consuming and then to have to pump myself–it was too much for me to handle. I wanted more time to spend just being with and enjoying Stella instead of operating various pumps for hours a day. I needed rest, which was impossible with having to wake up to feed her via tube and stay up to pump. As my friend and cousin Regan pointed out, breastmilk is very beneficial to babies. But just as if not more beneficial? Happy, healthy moms.
Happy and healthy is how we can now describe Stella. Sure, I wish breastfeeding worked out for us. But it didn’t. It’s that pesky parenting lesson that keeps popping up! In short, sometimes things don’t work out like you planned or hoped or envisioned, and you just have to make the best of it. Besides, I have three months of fond breastfeeding memories to hold onto. I remember nursing her for 30 minutes right after she was born. I remember her first few weeks, when she’d wake up hungry in the middle of the night, and Cody would change her diaper and then place this beautiful, tiny, wriggling little baby next to me. She’d be crying and squirming and sucking on her hands–and then she’d latch on and suddenly be so peaceful. Later, that all changed and breastfeeding was not so peaceful, of course. But I’m so glad we had those early experiences together. And, stepping away from my emotional attachment to breastfeeding, I’m so very glad that the formula took away much of the pain Stella was experiencing.
She may no longer get my milk, but she’ll always get my best! I just love her so much. And that’s really all there is to it.
Merry Christmas!
Stella's first Christmas rocked (and rolled).
I thought Stella’s holiday outfit made her look like a candy cane. Cody said it made her look like an escapee from Leprechaun Prison. Either way, she looked adorable.
Sleepy after eating too much ham and sweet potato pie, it’s time for us to hit the hay. Just wanted to wish everyone a very happy holiday, and inform you that Stella raised the bar in the feeding department. She took 530 mls by bottle, which is outstanding progress. A new record! And a very thoughtful Christmas gift for her parents–she really nailed it.
Just as importantly, she rolled from her belly to her back for the first time in weeks, saw and talked to her grandparents, great-grandfather, auntie and uncle via Skype, and helped me and Daddy cook Christmas dinner. A very merry day indeed. Hope yours was grand!
Daddy saves the day!
It was a curious morning. Stella was happy as could be. She wanted to eat and took right to the bottle. She started with such gusto! Then, would barely suck at all, doing the short, unenthusiastic sucks we referred to as “fake nursing” back in Stella’s breastfeeding days. It made no sense.
During her evening feeding, my arm was killing me from holding her for so long. And I’d had it! She was barely eating anything, and I had no idea why. Emotionally and physically drained, I stopped the feeding, handed Stella to Cody and went to walk (and cry) in the snow. I just had to get away.
I called my friend Kari, who is always such a comfort. It didn’t take long before I was a bit calmer, and a lot colder! So I headed home, expecting to see Cody sitting by Stella, running the pump to give her the bulk of her feeding through the tube.
I walked in to see Stella resting peacefully in Cody’s arms, finishing off a bottle. Framed by the kitchen doorway, it was a scene that melted my heart. I cried again, of course, but this time from relief, gratitude and sheer, unabated happiness. Later, he gave her the last bottle of the day, and she finished it as well.
It turns out that the nipple was clogged. Cody, using that handy engineer brain of his, figured it out. Puzzled by her behavior, he stopped feeding her and shook the bottle. Nothing came out. He replaced the nipple with a new, clean one, and tried again, and she drank it down. Honestly, I never would’ve figured that out. I couldn’t distance myself enough to think through it clearly. Plus, as they say in Boston, Cody’s “wicked smaht.”
So, Daddy is a hero tonight. Stella, too! I’m in awe of both of them, and feeling extraordinarily lucky.
Stella is four months old.
Love at first sight. (Four days old.)
On Wednesday, December 17th, Stella turned four months old.
It’s absolutely stunning to think that she’s only been here for four months. How is it even possible to love a virtual stranger so deeply in so little time? How can your world change so drastically in a matter of mere weeks? How can so much drama, change, growth and wonderfulness unfold in just one third of one year?
Today, we went to Dr. Numrych’s office for her four-month “well child” check-up. Stella continues to amaze. Sure, she’s had some setbacks with eating due to her reflux and dairy intolerance, but developmentally, she’s right on track. She’s supporting her own weight when you stand her up and help her balance. She’s grasping and pulling things to her. She recognizes her parents from across the room (you can tell by the big smile). She babbles and laughs often–her signature sound is what Cody calls “motorboat noises” while I see it as a cross between cooing and purring. Basically, all of this and a few other skills make her one fabulous four-month-old.
Of course, at these check-ups, you get the line-up of baby stats. So here goes. She now weighs 14 pounds and 6 ounces, which puts her in the 75th percentile for chubbiness. She is 24.5 inches long or tall, depending on how you look at it, which places her squarely in the middle at the 50th percentile. Her head circumference of 43 centimeters means that her noggin is in the 90th percentile, which should come as no surprise. Cody and I have giant heads.
Big heads run in the family. (Two weeks old.)
A couple summers ago, I headed to a nearby bicycle shop on a simple, safety-conscious quest to buy a helmet. To my embarrassment and salesperson’s awkwardness, the largest women’s helmet was way too small. My head looked like an orange with a mushroom cap sitting on top of it, so I had to head to the men’s section. Cody just bought a one-size-fits-all wool cap from our favorite coffee shop, Fuel, and it doesn’t cover his ears, so it’s practically useless in this cold winter weather and just serves to squeeze the top of his head while emphasizing his cheeks. It kind of reminds me of when we put Stella’s Red Sox cap on for the first time–we really had to squeeze it on. In a most adorable fashion, the hat accentuated her chubby cheeks and left an indentation on her forehead. (Later, I stretched it out and it fit just fine, but it took some doing.)
I woke up at midnight, 3am and 6am to feed Stella last night–I did it one extra time because we’d fallen behind yesterday. Each feeding takes 40 minutes to complete. We woke up at 8am. So some quick math should tell you how braindead I am right now. But even in the midst of sleep deprivation delirium I can tell you that despite all the challenges, fear and exhaustion of the past four months, I wouldn’t trade them for anything. Not even a blissful eight-hour stretch sleep on a magic mattress made of soft, billowy clouds.
Stella celebrates her four month birthday.
This blog is supposed to be about Stella, but I can’t help but reflect on how the past four months have affected me. I’ve become expontentially stronger and a lot more vulnerable at the same time. I’ve cried and laughed more in these four months than in the rest of my 31 years combined. I’m more tired than ever, but also more alive. I’ve lost my mind while becoming more responsible. I’m a different person, but more fully myself. It’s insane. Insanely difficult! Yet it’s truly been the best time of my life. Stella has brought me more joy than I ever could’ve imagined. And we’re just getting started.
The question I keep asking Cody is, “How did we get so lucky?”
Meet Libby.
Stella’s occupational therapist, Robin Glass, has fielded many a teary phone call from me. A great support to Stella and myself, she’s talked me through many tube-related worries and emotional upheavals. Knowing that I needed a boost, Robin connected me with a mom whose baby was similar to Stella in many ways. Due to the pain of reflux, this baby refused to eat, was hospitalized at Children’s, and had a tube–but not for long.
The baby’s name is Libby Norton. I called her mom, Trish, a couple weeks ago, on a day when I felt pretty scared and helpless. Trish was warm and wonderful as she candidly shared her story. She spoke about all the emotions she experienced as Libby “learned to eat.” Honestly, it was as if she had set up camp inside my head and was reading my mental diary aloud. It was so comforting to know that I wasn’t alone.
You can read Libby’s story at libbynorton.blogspot.com. Libby left the tube behind over a year ago. In fact, she is now a big sister to Sarah, who is fantastic eater–phew! Click here to read posts from that triumphant time.
Every time I get down, I remember that Libby pulled through. In her own time, Stella will, too.
Hold please.
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.
The Life and Times of Stella 