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.
The Life and Times of Stella 
Amber, thanks so much for writing this up! Tom forwarded us the hospital update a few weeks ago that I found rather scary. I don’t know why I haven’t had to courage to get in touch and offer support. I am thinking about it now and I really have absolutely no idea. On the other hand, I am truly impressed and proud of all you have done. I think it’s great you are putting this out there. I’m positive it will help lots of people. I would love to see you all sometime. . . you are an inspiration! We live pretty close to you, I think, so maybe sometime we can bring over some take-out or something and we can grub on that? Congratulations on everything you have accomplished with this girl! I’m going to subscribe to this blog so I can keep up to date. Love, Phyllis.
Wow Amber. I don’t know how you do it. It must be scary but I am glad you are getting answers and Stella is doing better. I will have to keep up to date. Poor little thing!
Dianne
Amber, I am so touched reading your blog. It reminds me of all that we went through. I am happy to read the newer posts and hear that things are going better. You are a great writer, by the way, (did I mention that I was a high school teacher in my pre-mommy life).
Wow. What an amazing struggle you went through. Just a couple thoughts for you, I don’t know if they will help. Our daughter, now 10 months old, also had reflux (although not as bad as your daughter) and was allergic to cows milk. (Apparently, it is not the lactose, but the proteins in cows milk that are the problem.) We similarly switched her to formula and saw improvement. However, the best improvement we saw was when we started to put pro-biotics in her formula once a day. Essentially, it is healthy bacteria, similar to the type found in yogurt, and it helps the stomach digest better. It made a huge difference to her digestion!! Most doctors won’t think to suggest it because it is ‘natural health’, but I would suggest considering it. Here is the kind we use (http://www.udoerasmus.com/products/probiotics_infants_en.htm ) should be available at health stores in your area. It is designed for infants 0-24 months.
Hey, I just wanted to note that probiotics are great. We did use them with Stella, though I don’t talk about that on the blog. Thanks for bringing it up!
oh, I just realized this post is a couple years old! 🙂 So you really don’t need the advice I suggested in my comment a minute ago. Sorry! I still enjoyed reading this and thank you for writing it.
Dang, Amber, such an ordeal for you all. I’m glad that Stella is doing better, and I hope she continues to thrive.
Hi Amber, thank you so much for this blog and all the information you offer. My daughter, Noelle, was born in Los Angeles, CA on 12/16/08 weighing 6 lbs 12 oz. I had a traumatic delivery, my placenta ruptured and she was taken by emergency c-section. We were both fine and she proceeded to be a great nurser. However, I had a heavy let down which I think ended up frustrating her so she would only fill up on foremilk and tire out easily. We tried offering the bottle at 4 weeks old but she refused and cried and finally would take 3-4 oz around 3 months old. She continued to gain weight but she was now off the curve. Her doctor was not worried, but then she went out on medical leave and we saw another MD who did worry and thought formula would be a better choice. Feeling pressure from family and now the doctor, we reluctantly switched to formula in the bottle and nursing for comfort. At 4 months old, she still was not gaining enough weight per the docs and was labeled FTT. We had our 1st admission to run an UGI, gastric empty study and labs all of which were normal. The GI doc said to go back to breast feeding but Noelle never did this the same. She continued to get frustrated and since I now was back at work PT she was in day care and proceeded to get cold after cold after cold. Each time she would lose weight. At 6 1/2 months old we had our 2nd admission and she had an NG placed. She gained weight with NG drip feedings at night only and she ate solids, nursed and bottle fed (although only 2 oz at a time) during the day. At 7 months we chose to have a GT placed since the GI figured she would need tube supplementation longer than 2 months…wish we hadn’t. She hasn’t gained anymore weight on the tube than she did without it. At 9 months old, she got hand, foot, and mouth (ulcers in her mouth and throat) as a result of another daycare illness. That was the last straw with daycare and she now has a nanny. Unfortunately, the mouth sores were so painful she did not eat or drink for 3 weeks! This is the only time I will say thank goodness for the tube! Since then, she refuses any kind of milk from a cup, only drinking water from a sippy. However, she is a willing eater of pureed table food. She is almost 14 months old and weighs 16 lbs 3 oz. She is doing everything a 14 month old should do although she is not yet walking on her own. She is happy and active and now pulls at her tube frustrated. We have an OT, PT, dietitian and early interventionist coming to our home to work with Noelle once a week. I am adamant about getting the tube removed soon as there really was no medical reason she had this placed other than to gain weight. Oh yeah, she developed reflux after the tube and gags and vomits often when this was NEVER and issue before the tube. Thank you so much for this information. I spoke with our dietitian today and we are taking her off drip feeds tonight going to 3 meals and bolus feeds during the day and slowly weaning the bolus feeds down. I so needed to hear from other moms that this is possible. Thank you!
Wow. I had never heard of the tube or tube weaning until checking out your site, but you’ve certainly had quite an ordeal. You’re right – finding your strength as a mother comes after birth. I’ve had some feeding issues with my son, but nothing as traumatic as this. However, food and feeding, and the refusal of a child to accept what you provide, is such an emotionally charged issue. It feels like the deepest form of rejection. Here’s to remaining positive and creating a happy relationship with food for our children!
This is what I have been looking for for almost 4 months now! My daughter is going through the exact same thing and all we hear from doctors is this is so uncommon! I would love to be able to talk to u via email and get some help/advice from u! She has had the bg tube for 2 months and her refusal to eat has gotten worse!! I thought labor was hard, wow that was a peace of cake when it comes to feeding a baby who screams at the site of a bottle and then having to put the rest in a tube!!! I feel like I am on the verge of a nervous break down!
My email is eicuttie@gmail.com if u don’t mind contacting me I would love that! I need to hear from someone who has gone through this and what they did to help their baby!