G.I. FAQs

Poor Verity. The discussion of her digestive difficulties seems neverending. As our G.I. doctor and our home health nurse agree, "What works with Verity one day will almost certainly not work the next."

FAQs...I'm sure I've missed some, but here are the common ones:

Have you considered food allergies, especially dairy?
Many of our Trisomy friends have various food intolerances, an unfortunately common problem in our society, and not just with special-needs kiddos. While I cannot say with absolute certainty that Verity does NOT have food allergies and/or intolerances, there are several reasons I have given up pursuing this as our answer.

• In May I followed the Whole 30 diet, a strict diet that involves no dairy, soy, or grains, among many other no-nos. There was no difference whatsoever before, during, or after the diet was over. This was during a very positive time of Verity's feeding development, during which she transitioned to the G-tube and began some oral feeds. There was no vomiting other than an occasional issue when she was bearing down to poop in the middle of a feeding. But overall, no intestinal distress to speak of. (I chose to do the diet for personal reasons, not because Verity was having reflux or vomiting at the time.)
• Along with that, aside from Verity reacting to the formula fortifier she was put on at birth, there really were no major G.I. issues while we lived in Iowa (the first 4.5 months of her life).
• The G.I. distress began almost exactly the day we set foot in Colorado. I personally believe the altitude has had a significant influence on her systems. Even so, there have been ups and downs within the time period we have lived at altitude.
• In November, I went dairy and soy free, the top 2 food groups that our G.I. doctor said cause problems. Absolutely no difference, even when we had a couple of "oops" moments and Verity got some frozen breast milk that was pumped before my dairy/soy-free diet. She didn't have a reaction to those feedings.
• After we switched to open/gravity feedings, we experienced a wonderful period of about a month during which we thought we had found the solution because Verity was doing SO well. Even if there were an allergy to something other than what I have already avoided, surely it would have presented itself?

Have you tried venting her during and after feedings?
Yes. This is what we did when we used an open syringe and allowed the feeding pump to drip into the syringe, and this is what her feedings are like now with the Farrell bag system, which we finally got approved and shipped with our monthly medical supplies. While the first month we did this we experienced fantastic results, unfortunately it is not a guarantee for helping keep the feeding inside of Verity...although using the bags, I am sure, definitely helps keep MORE of the milk inside of her. It's really quite amazing to me that even with being vented, she vomits such a considerable amount out through her nose and mouth. :-(

Have you tried slowing down her feeds?
If we slow them down anymore, we might as well be doing a continuous feed, lol. Currently her feedings are taking 75 minutes.

Have you tried a continuous feed?
While we used to do continuous feedings at night (a slower rate over an 8 or 10-hour period), we have discontinued that because we have so many nighttime issues to deal with already. With a nasal cannula for oxygen plus the boots-and-bar to prevent recurrence of clubfoot, plus the fact that she consistently wakens anywhere from 1-4 times an hour ALL NIGHT LONG...adding tubing and pumping milk into her stomach during the night is just a bridge too far.

What about continuous feeding during the day?
This is definitely a possible next step if we can't find another solution. We have not yet tried this, and I am loathe to do so simply because we are making some wonderful gains with her development in other areas...it would be a shame to tether her to the I.V. pole that holds her feeding and Farrell bags during her waking hours, effectively limiting the various activities we are encouraging her to try for her therapies. It's also much more awkward to hold her, since the clamps of the Farrell bag need to be lower than her belly while the bag needs to be higher.

Have you tried spacing out her feedings to give her tummy time to rest?
We experienced some success with this back in late August, and so we decided to try that again recently. Through November, Verity was getting 6 feedings a day (every 3 hours, each feeding taking one hour) with no feedings at night (except for a few times when she woke and was inconsolable and we just set up her first feeding for the day at 3am, lol). A couple of weeks ago we decided to stretch it out again, since 6 feedings a day seemed like a lot for her poor little tummy, especially now that she is closer to 10 months old than newborn. So we tried 5 feedings every 4 hours, and that did seem to help. We increased the volume slowly so that the math worked out for her to be getting roughly the same amount. We have discovered that we can USUALLY give her higher volumes in the mid-morning and early afternoon, whereas she consistently has problems tolerating her early morning, suppertime, and bedtime feedings. On paper the numbers do not look great, since she is nowhere near the volume the dietitian and G.I. doctor would like her to be at. Moral of the story: Math does not always work with a living, breathing, vomiting little person.

Have you had [insert test here]?

• In late April, Verity had an upper GI done in preparation for her G-tube surgery. 
• In early November, we did a 24-hour pH probe. (This revealed a significant level of acidic reflux even though she was on Zantac.)
• I have asked our G.I. doctor for another GI series, including a small bowel follow through (SBFT) so we can see if there are issues with delayed emptying. Because we consistently have violent vomiting episodes at her suppertime and bedtime feedings, I am wondering if things just get backed up.
• Because we have seen in the past that UTIs cause an increase in reflux, and because Verity has had 2 confirmed UTIs in the past few months, we received a referral for urology and have more tests scheduled for January 4: another renal ultrasound and a VCUG. We will then consult with the urologist that same day to go over the results. (Her first renal ultrasound, by the way, was when we were in the hospital for her first UTI and major reflux issues. That ultrasound showed that one of the kidneys is a bit smaller than the other.)
• We've discussed an EGD scope, but since our G.I. doctor really doesn't think that would give us answers that would change anything we are already doing, we have decided not to pursue this since it needs to be under sedation and apparently can't be coordinated with the sedated hearing test that will be happening in January.
• I'm sure there may be other tests that would be beneficial...if we don't get answers from these scheduled tests that help, we will explore other options.

Does she take any medication for reflux?

Yes. In early September she started on Zantac; however, we discontinued this once we switched to the vented feedings and she stopped puking altogether! But then in late October the problems resumed, and so we started Zantac again. When the pH probe revealed that she still had significant acidity in the reflux, we switched to Prevacid, which she is on twice a day. These medications do not prevent the reflux but instead lower the acidity so that it isn't burning her esophagus. Unfortunately, vomiting through the mouth and nose is always going to be uncomfortable no matter what...

Why don't you just get a Nissen fundoplication?

After interviewing moms whose little ones have had this surgery, where the top of the stomach is wrapped around the bottom of the esophagus to supposedly prevent the possibility of vomiting, my "gut" instinct (no pun intended, I promise) is that this would be one of our last resort options. For some, the surgery helped for a short while only to leave the family right back at the starting point, as their little one began vomiting again only worse. I've heard enough moms say that if they had to do it over again, they would NOT do the Nissen. Since I've heard more problems than success stories...right now I do not feel this is our solution, but I trust God will make it clear if we need to decide otherwise.

What about a G-J tube?

Some babies end up with this different feeding tube that delivers nourishment directly to the intestines, bypassing the stomach altogether. This would require a slow, continuous feed probably about 18 hours a day, and I've addressed my feelings about this above. In addition, it would require yet another surgery, and if the G-J tube comes out, we can't replace it ourselves like we can the G-button.

So...what now??

Good question. Since I keep hearing from other Trisomy moms that their little ones eventually outgrew these common G.I. issues, I kind of feel like we just have to grit our teeth and stay the course. I'd love to get a definitive answer--perhaps the G.I. test series will show us something. But meanwhile...we just keep doing the best we can, feeding and loving Verity the only way we know how. She may not be on any growth charts; she may not be gaining in ways that are clearly evident: Her October, November, and December weights were ALL. THE. SAME...but she grew 2 centimeters in length! Her cheeks are round! She has rolls, rolls on her wrists, rolls on her thighs, rolls on her upper arms! Her color is great! She is getting sturdier and has amazing head control! She is interacting more and reaching for toys! She laughs and smiles! By no means is she wasting away, even though it seems she vomits half of her feedings 2-3 times a day.

I've come to the end of my computer time...now I need to take over Verity duty so that Ted can take the rest of our crew to the Family Fun Night at church. We divide and conquer a lot these days; anytime a feeding is involved, it's easier just to keep Verity at home and deal with whatever that will involve. We are grateful to have a daytime nurse Monday through Friday...but today is Sunday! So here I will leave you. If there's a question I haven't addressed, feel free to ask in the comments! We really do appreciate everyone's concern for our sweet Verity. I know everyone would love to help us find "The Solution." We continue to pray that God will heal her or help us know how to help her.