GERD

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.

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.

The plot thickens

Posted on by amberhj

Today, we went to Children’s for Stella’s weekly occupational therapy (OT) appointment. We are lucky to work with one of the best therapists in the country when it comes to infant feeding issues. At her suggestion, we are trying out thickened feedings in the hopes of making swallowing easier for Stella.

The therapist explained that a lot of babies with reflux have difficulty with swallowing. No one is really sure why, but the experts are beginning to understand it a bit better. Our therapist’s theory is that reflux, or more accurately GERD (Gastroesophageal Reflux Disease), causes inflammation which interferes with the sensitive receptors in the throat that trigger and guide swallowing. By thickening Stella’s formula, we may be able to slow the flow down so that swallowing is easier for her. Last week, we tried thickening for the first time, with little success. The mix was just too thick, and Stella was having to work too hard to get too little. So this week, we came up with a new ratio of formula to thickener that should work better. I tried it out at her last feeding and it went pretty well–not great, but okay. We’ll try it a couple more times before we judge it.

The therapist told me that I could assess how well a feeding is going, and if a feeding strategy is working, by listening to Stella’s breathing–it should sound comfortable and smooth but steady. There should be two or three sucks before each swallow. Too fast and frantic, say, one suck per swallow, and she winds up gulping, getting upset and pulling away from the bottle. Sometimes, she accepts the bottle in her mouth and doesn’t suck at all, or sucks very little (with four or more sucks per swallow), which means the formula is too thick and slow or that she simply doesn’t want to eat. Which brings me to a key point. Stella is in control at all times. However thick or thin the formula, however big or small the opening of the nipple (we’ve tried three different types of nipples so far), she can choose how hard to suck. She controls the flow. So really, all we can do is try to gauge what makes her most comfortable, and let her take it from there.

This hasn’t been an easy fact to accept. (Or should I say “tough to swallow?” Ahem. Sorry.) My family has a very American attitude when it comes to the power of hard work and determination. As cheesy as it may sound and as a big a cliche as it is, I have always believed that if you try hard enough, you can achieve anything. This belief propelled me to some small but personally gratifying successes in academics, athletics and my career. But this situation with Stella isn’t so simple. Ultimately, after all our best efforts, it’s up to Stella to turn this around. Cody and I fully believe that she can do it. But we can’t force it. And therein lies a fitting lesson for us as new parents. Now and in the years ahead, Cody and I must do our best to support Stella. To love and encourage her. To provide her with the environment and tools she needs to reach her potential. To never give up on her. But then, as hard as it may be at times, we have to let her find her own way.

I’m not proud of this, but after one particularly disappointing feeding last week, I actually threw a bottle across the room. Not good. Not good at all. Rest assured, I was immediately ashamed, and I won’t do it again. Thankfully, since then, Cody and I have come to accept the situation a bit more, instead of fighting it so much. Our anger and fear have subsided a bit. We more purposefully focus on the positives, however small. If she only takes a little from the bottle, but seems relaxed, we celebrate the ease with which she ate and compare it to the screaming and arching she used to do upon being tipped into the feeding position–before the bottle was anywhere near her mouth! Today, she drank some from the bottle, took a break and went back on the bottle not once but twice! A few weeks ago, that was an impossibility. She’d give it one go, if you were lucky, and soon after she’d pull off and it was over. No amount of cajoling should convince her to continue. So, she is making progress, and to keep us focused on that, I’ve begun to note all the positive signs in our feeding log.

When the tube comes out (oh, what a glorious day that will be!), we’ll look back at all of this and marvel at how far we came. Cody and I will dance for joy and pat ourselves on the back. But, really, it will be Stella who deserves the credit. I can’t wait to give her a congraluatory kiss. Until then, we’ll celebrate every little success along the way. Hope you’ll join us.

Baby steps

Posted on by amberhj

The first bottle feeding of the day is always the worst. We’ve learned to lower our expectations for that one. Yesterday, she completely refused. Didn’t take a drop. In the days preceding, she took around 20 mls (out of 115).

Well… today, she took 100 mls from her first bottle! Then, as I held her up in a celebratory moment, a bunch of the 100 mls cascaded back out onto my Natick (hometown) sweatshirt. Such are the ups and downs of this journey. They come in such quick succession. It’s nauseating!

Regardless of the upchuck, I see it as a good sign. I don’t think that the regurgitation caused her much pain, though she did furrow her brow afterward, as if concerned or confused. So I’m hoping that, overall, it was a positive eating experience and a baby step in the right direction.

Today, Stella’s doctor recommended that we take her to Children’s for an ultrasound, to help rule out an obstruction in her GI tract, which could be impacting her reflux. Any type of non-invasive investigation into what could be affecting Stella is a great idea! He’s sending the referral today, and I am to call Children’s tomorrow to schedule the ultrasound.

How Stella went from the boob to the tube.

Posted on by amberhj

Where to begin? Somehow, we moved from exclusive breastfeeding, the most “natural” thing in the world, to formula feeding through a nasogastric tube, a medicalized method of feeding that we’ve yet to make peace with and hope to leave behind soon.

Stella stopped wanting to eat sometime ago. It began slowly. Practically imperceptibly. At around 5 1/2 weeks, I noticed she’d cry sometimes while nursing. She’d gag or choke on the milk a bit. So I tried nursing her in different positions, in an effort to slow down the flow of milk. It seemed to help, but she wouldn’t eat for very long. Of course, we’d seen a lactation consultant early on who told us with much enthusiasm that Stella was an incredibly efficient nurser who managed to take in a lot of milk in a little time, so it seemed okay.

Then, there was the ER trip in early October when she was eight weeks old. She vomited and had blood and diarrhea in her diaper. After x-rays, blood work and a stool sample came back looking good, they suggested that I stop eating dairy as lactose intolerance was the most likely explanation. I would go on to give up dairy for two months. (As a friend put it, this was “a fate worse than death.”)

Soon after, at her two-month appointment, we learned that she wasn’t gaining weight as quickly as expected. She’d dropped from the 50th percentile to around the 25th. We were alarmed, but she seemed happy and didn’t seem have too much trouble eating at that point, so we didn’t panic. However, week after week of slow weight gain along with Stella’s increasing aversion to eating soon made it clear that something was wrong. We had to do something. But what?

Well, first we switched doctors. Her pediatrician was nice enough, but didn’t take our concern very seriously. He said, and this is a direct quote, “Just keep feeding her.” Sigh. I also met with two lactation consultants several times each. Meanwhile, I spent all day every day just trying to feed her. The stress was unbearable. My milk supply had gone down in response to her taking in less, so I was pumping around the clock as well. A typical day entailed monumental, constant feeding efforts. I fed her by breast, often with a leaky, pain-in-the-ass supplemental nursing system, by bottle (though she really didn’t accept it from me), and even one milliliter at a time via medicine dropper, all in a desperate attempt to provide her with adequate calories. I was on the verge of a nervous breakdown.

Finally, one of the lactation consultants witnessed Stella’s refusal to eat and was convinced that she suffered from reflux. Because Stella didn’t spit up or vomit, her reflux was harder to detect (it’s called “silent reflux”). Soon after, Stella’s new doctor prescribed Zantac to reduce the acidity of her stomach contents and therefore alleviate the pain of reflux. She also recommended that we collect a stool sample for a “reducing substances” test that could shed light on whether she was lactose intolerant. After weeks of trying, we finally got one, and testing showed that there was indeed lactose in her stool. The lactose wasn’t being broken down, indicating temporary (or secondary) lactose intolerance–the kind caused by damage to the GI tract, which babies outgrow by around one year of age. (Later we would learn that it wasn’t that simple, but it was nice to finally discover a big piece of the puzzle.)

Also at the suggestion of the lactation consultant and in cooperation with Stella’s doctor, we got in to see a feeding specialist–a renowned occupational therapist–at Seattle Children’s Hospital. She was struck by Stella’s intense level of upset and adamant refusal to eat. A few days later, after another week of low weight gain, we were admitted to Children’s for what ended up being a four-day stay. They placed the nasogastric tube (so traumatic!), through which she is fed hypoallergenic Elecare formula. Whatever she refuses to take orally, she gets through the tube. (Mistakes were made at the hospital which painted an inaccurate picture of her status and therefore resulted in less than optimal decision-making. I will explain all of this in a future post. None of the missteps were devastating, but I believe that sloppiness and inattention clearly diminished the value of our stay. )

The formula has helped. She is a lot more comfortable now. For several reasons, we moved on to a new pediatrician who has more direct connection and access to Children’s. He has seen this in many babies, and believes that Stella has a cow’s milk protein intolerance (simply put, dairy is one of the only things that passes through in breastmilk without being broken down), which irritated her gut and impaired her ability to break things down, including lactose and fatty acids, which were both detected in her stool sample. A stool sample taken after a couple weeks on the formula came back normal, so as emotionally difficult as it was to move away from breastmilk, we know the formula has made a clear difference.

At this point, reflux and eating refusal remains. During and immediately after her hospital stay, her intake by bottle had improved a great deal. But since then, it has regressed, a difficult reality for Cody and me to accept. However, her doctor, who is wonderful, says that many babies regress while on the tube, but that she should rebound and pull through in time. Our biggest challenge these days is to stay positive and to keep the faith even when eating doesn’t go well.

We see both her doctor and occupational therapist (who provides us with new strategies aimed at making eating more enjoyable for Stella) weekly. We will meet with a pediatric gastroenterologist at the end of the month. We are strongly considering allergy testing, craniosacral work, and an adjustment in her reflux meds. We track every milliliter that she takes and doesn’t take, enter it into an Excel spreadsheet and analyze it in graphs and charts. At night, we wake up every three hours to feed her by pump so that she can get enough calories and a good night’s rest. We are doing everything we possibly can. We have gone above and beyond since the beginning of all this in an attempt to help Stella thrive. There is a sense of peace that comes with knowing this.

People called me a warrior after Stella’s 32-hour, unmedicated birth. But, looking back, it wasn’t true. I didn’t become a warrior, or earn my stripes as a mom, until all hell broke loose. Until Stella struggled, and I proved that I would move heaven and earth to help her even just a little bit. I’m proud of that. I’m proud of Cody for his incredible sacrifice, support and efforts. And I’m proud of Stella. She’s happy, healthy and sweet as can be. She is doing the best she can given her early, unfortunate experiences with eating.

Her mom is as stubborn as they come. So it really comes as no surprise that our little girl is as strong-willed as can be. She is such a wonderful, strong character. As hard things are right now, one thing is for sure: she is going to be just fine.

Much more to come.