tube feeding

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!

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.