infant

Daddy saves the day!

Posted on by amberhj

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.

Posted on by amberhj

Love at first sight.

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.

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.

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?”

The latest trend in bottle feeding.

Posted on by amberhj

Wanted to make a quick note about Stella’s feeding progress. We only fit in four bottles today (in addition to her two pumped feedings at night) because she napped so much that it put us “behind.” The good news is that she took 100+ mls from two bottles. This has been happening more lately, so I thought I’d analyze her intake in a new way, with a new chart. Instead of just looking at the total she takes by pump/gravity and the total she takes by bottle each day, I plotted the average amount she takes each time we offer a bottle to her. It doesn’t account for other indicators of success, like how relaxed or receptive she is, but it helps me see more clearly how much she is taking at each bottle feeding. My previous way of charting the data lumped each day’s intake together and didn’t really account for differences in the number of bottles offered per day.

What I found was encouraging. This number–the average amount she takes per bottle offered–is trending upward. On average, she now takes about 80 mls from the bottle each time we offer it to her. The total amount we need her to take is 115. I have some ideas on how to help her get there.

For instance, once in a while, she really gets on a roll, takes a whole bottle and winds up sucking on an empty nipple. Occasionally she gets to  around 100 mls and stops–and I wonder if it’s because the flow is slower with less in the bottle. So, I’m going to get a bigger bottle to keep the flow going longer and to have more formula available for times when she wants to take more than 115 (the bottles we use only hold about 120). It’s a way of letting her drive her intake to a greater degree. If she takes less than 115 at one feeding, that’s fine so long as she takes more at another. I sure hope that made at least some sense and wasn’t too mindnumbingly boring.

Well, I’ve had enough of blogs and spreadsheets for one day. Good night, Cody. Good night, Stella. Good night, moon. Good night, Excel.

Meet Libby.

Posted on by amberhj

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.

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.

Stella steps it up. Again.

Posted on by amberhj

I’m thrilled to report that Stella finished TWO BOTTLES today. And her others were solid performances as well. She had a fantastic day all around. There is still much progress to be made, of course. But Stella seems to be getting her groove back. Day by day. Bottle by bottle. Milliliter by milliliter.

It’s tough to do, but Cody and I try not to focus too much on volume. Just as important, if not more so, is her comfort level and receptiveness to the bottle. If she befriends the bottle, volume will surely follow.

Today, for the most part, she did not fight the bottle. There is still a bit of turmoil within her, however. At the start of most of her feedings, she’d take to the bottle quickly when I offered it. Then, a second or two later, she’d pull away and fuss a bit. But there was something different about the fussiness. I realized that in some cases she was telling me that  she wanted the bottle back! Yes, she was a bit conflicted, but I could see that she wanted to eat. So I’d offer it to her again, and off she went. (Or I’d offer it to her again, she’d pull away again, want it back, and THEN she’d be on her way.) As I’ve stated before, there will be more ups and downs, but I think Stella is coming around.

Not loving the camera. Or the outfit.

Not loving the camera. Or the outfit.

I had a more than my share of belly laughs this afternoon, during Stella’s photo shoot for our holiday card. Her range of expressions is so broad! And if she doesn’t like something, she will let you know in no uncertain terms! As a proud new mom, I bought her a fancy, adorable Christmas outfit: a black and white dress, with matching embroidered sweater, black tights and mary janes. To top it off, I bought a red hat, for a splash of festive color. Well, I had her decked out in this “aw”-inducing get-up for all of five minutes before Stella threw a fashion fit! Even after I removed the sweater, which was probably a bit itchy, she was clearly uncomfortable, writhing around and crying like her tights were in fire. So, I gave up on the chic factor and took it all off except for the hat. Somehow, the pictures wound up being perfect. The simplicity really worked, and she was so much happier, which made it a lot easier to get card-worthy shots. Another valuable parenting lesson, perhaps? I learned to roll with the situation, even if it didn’t fit my idealized vision. The funny thing is that the photos, card, and experience turned out better as a result.

That's better! (An outtake from the holiday card photo shoot.)

That's better! (An outtake from the holiday card photo shoot.)

The hat also served to cover up her patchy ‘do. Stella and I are both losing our hair. The dark locks she was born with are quickly giving way to blond peach fuzz, while my postpartum shedding only serves to clog the shower drain. Our paths continue their parallel trajectory. Before long, we’ll both have huge appetites and bald heads.

Tomorrow, we have two appointments at Children’s–an abdominal ultrasound and occupational therapy. Not looking forward to the disruption to our schedule, as it throws off Stella’s napping and eating rhythm. But the appointments’ longer-term contributions to Stella’s overall progress are worth any short-term inconveniences or minor setbacks. Besides, she’s shown that she can bounce back! Amen to that.

Simply thick. But thankful.

Posted on by amberhj

Stella is currently enjoying a concert by Daddy as I assess the day’s progress. Today’s bottle feeding went pretty well. Not on the same level as yesterday, but there was a major bright spot: she polished off an entire bottle at her last feeding!

A probable explanation for today’s dip in overall intake, besides the fact that we tried to feed her during an appointment (she usually seems too distracted to eat when we are in an unfamiliar place), is that we used our last packet of Simply Thick last night, having failed to order more in time. This lapse on our part was simply, well, thick. At first we were unconvinced of the effectiveness of thickening. But this weekend, we finally found a thickener-to-formula ratio and nipple combination that seemed to be working, then promptly ran out of thickener. This morning’s feedings were left “thin, “so not surprisingly, she didn’t take as much from those bottles. However, this afternoon our wonderful occupational therapist, Robin Glass, hooked us up with a couple packets to tide us over until our delivery arrives (which should be tomorrow). With the proper balance restored, Stella proceeded to down a full feeding of 115 mls in no time flat. 

The thickener doesn’t just make the formula easier to swallow. It also helps with Stella’s reflux as it’s heavier and doesn’t come back up as easily. Stella usually sounds pretty phlegmy due to her reflux–there’s a rattling in her throat. In the short time since we’ve thickened her feedings, Stella’s breathing sounds more clear, perhaps an indication that her reflux is being kept at bay.

I’m so used to having to set up a pump or gravity feed when she’s had enough of the bottle, I almost don’t know what to do with myself when she finishes one. But inevitably, I wind up dancing around the house with Stella in my arms. (I almost always put on Christmas music when I feed Stella these days, to keep the mood cheerful and mellow.)

Robin Glass isn’t the only person to whom we owe thanks. A few days ago, we found out that Stella’s formula costs $43 per 14-ounce can. In four weeks, we’d rung up a formula bill of close to $1,000! On top of that, insurance was refusing to cover the formula, pump, and various other feeding supplies that Stella currently requires. After Cody spoke with the insurance company, we’d pretty much given up and were about to apply (probably in vain) for financial aid from Seattle Children’s Home Care, from which we order Stella’s supplies every other week or so. At the same time, as back-up, we did some quick online research and discovered that Elecare is offered online by the manufacturer at a slightly better price.  However, to our amazement, a representative of Home Care named Skylar somehow convinced the insurance company to cover everything! We are so grateful and plan to send a little holiday gift Skylar’s way.

With no appointments tomorrow, Stella and I can take it easy and simply enjoy the day together. We’ll go for our walk, take care of some household chores (with Stella in her beloved Baby Bjorn), and hopefully do some dancing as well.

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!

A memory from our hospital stay

Posted on by amberhj

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

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

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

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

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

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

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

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

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