NG tube

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.

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!

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.

Trials, tubes and tribulations

Posted on by amberhj

When Stella began to stop eating, so did I. Not intentionally, mind you. I just couldn’t. My appetite had left the building. Anxiety made it impossible to keep food down. I had to use juice, and the mantra “For Stella!”, to swallow anything. Besides, with dairy out of the picture, my go-to comfort foods were literally off the table. Stella and I were on disasterous parallel paths. As her weight gain slowed down, my weight plummeted. I wasn’t eating, and with all the pumping, I was burning hundreds and hundreds of extra calories. My lips were cracked and bloody and my skin rebelled. Of course, my declining health did not bode well for Stella. As one doctor put it, we are “a unit.” I needed to be strong and healthy for her and me.

So, on mornings like today when there is one tube-related fiasco after another, I think back to the days before the tube, and how terrified and helpless I was in the face of her eating refusal. At least now, with the tube, we can be sure that she is getting the nutrition she needs to thrive. Another important benefit  of the tube is that it takes the fight out of bottle feeding. As our occupational therapist explained, Stella has been trying to tell us something. And she felt like she wasn’t being heard. Despite her protests, we kept trying to feed her. We had to. But it was leading nowhere. The more we fought with her, the less she wanted to eat. With the tube, we can offer the bottle with less pressure and stress. We can allow her to eat comfortably for as long or as little as she wants, without having to force the issue. Each positive experience teaches her that eating is enjoyable. On our fridge, I’ve posted a quote by our occupational therapist: “If eating is fun, the volume will come.”

As I’ve explained, except for a couple feedings at night which we administer by pump while Stella is asleep, we always offer Stella a bottle before resorting to the NG tube. What exactly is involved with tube feeding? Before any formula can be delivered in the tube, we must check the tube’s location–to make sure that it is indeed in her tummy and not in a lung or otherwise out of place (scary, I know). We do this by attaching a small syringe to the end of the tube and squirting a cc or two of air into the tube while listening to Stella’s tummy with a stethascope. When we hear the whoosh of air, we know we’re clear. We pull the air back out into the syringe to help minimize gas. Stomach contents (watery-looking formula) usually come back out with it–while unsavory, this is actually okay and just another way to confirm that the tube is in the right place.

After confirming placement, we use the pump or “gravity” to provide Stella with the remainder of her feeding. The gravity method simply involves attaching a fat 60-ml syringe to the end of her tube, filling it with the formula and holding up the syringe as it slowly flows down the tube. Holding it up higher makes the formula flow faster, and holding it lower slows down the flow.

We usually choose the gravity method when Stella takes at least half of her bottle. When there is more than half of a feeding left, we go with the pump, and there’s more legwork involved. We have to fill a feeding bag (which unfortunately makes it sound like we are taking care of livestock and not a precious baby girl) with formula, “prime” the bag and its attached tubing to eliminate all air, hook up the bag’s tubing loop to the pump, program the pump so that the rate of flow and dosage are set, connect the bag’s tube to Stella’s tube, then hit “run” on the pump. It’s imperative that we stay with Stella during the pumping, for safety reasons. When a pump or gravity feeding is finished, we then flush Stella’s NG tube with a couple cc’s of water to keep it clear and clean. From start to finish, a feeding takes 45 minutes. We do this seven or eight times a day.

We had a tough morning today, and the tube felt like our enemy. Stella took only 5 mls from her first bottle. The pump malfunctioned twice, so she didn’t get her full amount of formula at two feedings. A feeding bag leaked all over the place. Stella threw up. And worst of all, Stella sneezed out her NG tube.

This means that I had to put a new tube back in. Frankly, this is something that no parent should have to do to their child. But I do it, because it’s less traumatic and disruptive than taking her to the emergency room where we wait around in a room full of sick kids until a strange person in a not-so-cozy environment shoves a tube into her nose as Stella lies on a flat hard bed under harsh hospital lights.

I wait until Stella is asleep. I measure and mark the tube so that it will sit right at the base of her sternum at the entrance to her little tummy. I dip the end of the new tube in both lubricating gel and water to make it extra slippery. I tear off pieces of pink medical tape and have them at the ready, for securing the tube to her chubby cheek as soon as  the tube is in. I take a few deep breaths, try not to cry, and do one of the hardest things I’ve ever had to do.

She wakes up a second or two after I begin inserting the tube, but I have a few more seconds before she realizes what’s going on. Then she starts crying. Really, really crying. I give her a pacifier, which calms her and helps the tube go down due to the swallowing action. Within seconds, the tube is in, and I can simply hold, rock and comfort my sweet Stella Bella. She only cries for a couple of minutes before, amazingly, I get a smile. I tell her that she is so strong. That she and I will get through this and be just fine. That I love her more than words can say. And that I could not be more proud to be her mom.

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.