Baby’s Chronic Vomiting: Insights from the GI
We put all of our hopes into this specialist doctor visit to address Baby’s chronic vomiting and oral aversion.
Our GI Visit in a Nutshell:
- GI does not want us to be concerned with growth since Baby’s weight-to-length tracks for his corrected age.
- Try continuous feeds at night, smaller feeds w/ oral stimulation during the day to regain hunger cues. May take 1-2 days to adjust.
- Trialing cyproheptadine med for bedtime. No zofran or erythromycin.
- Referral to feeding clinic, and surgery team for possible g-tube if wanted.
- Not allergic. Thin hypoallergenic formula is easy to vomit, so transition back to sensitive based formula.
Preparing
Jer took the day off to help me, which made things go so much smoother. I stayed up feeding and caring for the baby last night, so I was a zombie in the morning. He cooked a nice breakfast, helped the kids get ready for school, and made the drive to the hospital in the rain. Parking only took 30 seconds and we were on time! He held the baby and was another pair of ears while I gave the doctor my full attention.
How do you condense all the questions, worries, and information from 7 months of distress into a 40 minute discussion? I tried to keep my focus on what I can control: being our son’s advocate, and giving the doctor pertinent information to make a treatment plan.
Meeting the GI
Instead of a “feeding clinic” with a dietitian / nutritionist present, this was a “GI clinic” with the doctor only. I preferred it that way since our concern was with what the pediatrician called structural.
Baby was on a slow tube feeding during the appointment, and projectile vomited in front of her right in the middle of the discussion. Even his NG tube came out, so the doctor held him to try to calm him as we attempted to put it back.
The GI listened to what has changed since our last GI visit. Our focus used to be on getting Baby to take more orally vs today where he is taking zero. His vomiting now has worsened with new symptoms, and it’s affecting his growth. Then GI asked what the goal of our short meeting should be.
“I want to know why he’s chronically vomiting and what we can do about it.”
The Cause
GI said it’s probably just “The NICU Hangover”. I hear this phrase applied to parents’ exhaustion and emotional trauma after the NICU. This is the first time I’ve heard it regarding the lingering effects of a baby spending time in the NICU. Either way I interpreted it as, We don’t know why, let’s point to how he was in the NICU for 113 days. I’m probably not being fair, because a lot of our troubles ARE from underdeveloped organs and complications from being born so early.
Growth and Reflux Concerns
She did actually physically examine him, including getting a good look at his irritated cheeks from all the tape changes, plus his diaper rash.
The first thing the GI emphasized is that Baby is NOT underweight; he’s strong and lifting his body and alert and interactive, which would not happen if he was undernourished. I didn’t tell her that his round belly wasn’t there a week ago when he was suffering so badly. GI does not want us to be concerned with growth because his weight-to-length is tracking for his adjusted 4 months.
First- overfeeding. Now that he is 4 months adjusted, we are not needing to be on an “every 3-4 hours, 7 feeds a day schedule” and he has less calories required. We want to feed him when he’s hungry, just like for us.
Gi talked about how we’re at the peak of when his body anatomically will have more reflux anyways, so it’s to be expected; it doesn’t hurt them. “No no no,” I thought, “don’t dismiss our concerns! This is not normal though- this is not where I want this conversation to go.” I told her that she’s seeing him after he was really struggling, on the border of dehydration, and only after our doctor made very temporary changes to his formula and feeds so we could survive to this point to see her. Those changes like long feeds all day and night are not sustainable. When he did have good weight it was catch up growth, and at its worst it was 10g/day or less. She insisted that with growth, “The Average is what matters.”
Feeding Changes
Our time was almost up, so the GI offered that there are some things she could do for us today. Since she doesn’t think it’s anything anatomical, changing feeds might help and she’d help us get numbers and a schedule together.
- We are going to try continuous feeds at night and smaller daytime feeds.
- Our goal is to try to keep feeds under 60 minutes so he has some time OFF feeds to regain hunger cues. It may take 1-2 days at a new schedule to figure out.
- During the daytime feeds we will work on oral stimulation with a little banana or purée on a pacifier to help him think in his head that he might be ready to eat. The oral stimulation could also improve gastric squeezing.
Feeding Clinic
GI wants us to go to the Feeding Clinic (the one in Lehi or SLC) because they can work on non-bottle techniques with thickened purees until Baby feels better.
She asked why we canceled the original appointment with the feeding clinic. I told her about working with our local specialists more often instead, the logistical challenges of making it to that appointment, and how I was also struggling with PPD so it was overwhelming when the benefits didn’t seem to be there.
She’s working on getting us back in.
Medication Change
GI has us trialing Cyproheptadine medicine for bedtime instead of Zofran. Does not want us to do the erythromycin, which wasn’t a great long term solution from our pediatrician anyways.
G-Tube
I asked her about getting a G-tube. She doesn’t know Baby Henry well enough, so to her it’s neither good nor bad for him. It could take at least 4-6 more months on the ng tube. She is sending a recommendation to surgery for us so that if there aren’t improvements in the next couple of weeks, we can move forward with the g-tube surgery if we prefer.
At this point I do prefer a g-tube because I think not having anything on his face and not needing to do the emotionally draining task of reinserting the tube or re-taping his face daily can improve his chances of being interested in eating from the bottle again.
Formula
Since we’re on a trial of the hypoallergenic formula Nutramigen I asked what formula we should be feeding him. We’re not sure if he’s tolerating it more just because we are doubling the feeding time.
GI doesn’t think he needs to be on it, doesn’t think he has allergies, and was pretty chill about what to feed him. She gave us a sample of Similac 360 Total Care Sensitive and said if it works better then we can switch over or go back to Nutramigen. On her notes it also says “Okay to return to ‘sensitive based’ formula (Sim Total Comfort, Enfamil Gentlease)”.
I consulted with our Nutritionist, and we landed on going back to Gentlease. The GI said Nutramigen is very thin and makes it easier to vomit, so I was leaning towards getting off of it. He’s having bad diaper rash now on the Nutramigen that we’re trying to treat; I’m guessing the formula makes his stool more acidic. The formula stinks so bad and he doesn’t want to drink it orally at all.
I needed to decide so I could order a month’s supply from our home healthcare along with his other feeding supplies. We replaced his pump today since the closure broke and we needed to rig it with a rubber band in order for it to stay closed.
My Thoughts
I have mixed feelings about today’s visit, which could be the PPD talking. I wanted a plan, and we have one, but who knows if it will work? I’ve been let down so many times that it’s hard to get my hopes up. At the same time all I can do is try to hope so I can keep going. It still feels like we have a long ways to go.
This is a lot of information to process, and I have a hard time remembering things now so I’m trying to write down as much detail as I can. I wanted Jer with me to confirm what I was hearing and getting from the meeting, since I can’t rely on my own cognitive functioning anymore. It’s hard not to feel like this experience has taken so much from me, including eroding my hard-earned brain cells.
Time to try to sleep.
-Kat
