This would be the one that summed it all up.
This amazing shot (yes...it is a picture of Hallie in mid-projectile vomit) was captured by our good friend Vanessa a few months ago. Sadly, it just about sums up our life on a daily (who are we kidding...multiple times a day) basis.
This week has been a pretty bad one. Hallie did have her ear tubes placed, is probably teething (she's always teething), and ran a bit of a fever after getting three vaccines during her belated 15 month well-baby (???) check up, during which we discovered that she has not gained much weight at all in the past three weeks (like 2 ounces total, for a grand total of 9640 grams, or 21 lbs. 5 ounces. We know that, after two 300 to 400 calorie days, she has lost at least some of this weight). Anyway, our ped. put Hallie on reglan, which used to scare us but which looks far better than the alternative (a surgical procedure called the Nissen Fundoplication that essentially places a knot in the baby's esophagous that will a. shorten her already too short GI tract and make reflux worse and b. prevent her from vomiting, even when she really needs to do this to clear a bug or something poisonous from her system). Alas, the reglan is not helping Hallie empty her stomach (maybe because she's not eating?) yet and is not having any of its magical anti-emetic effects yet, either. At least it is not having any negative neurological side effects (which is why we were reluctant to place Hallie on it in the first place).
Anyway, after a bunch of projectile vomiting and virtually no food intake, we decided to bring Hallie into the ER yet again. I was hopeful that Hallie had a hairball---yes, you heard it right, a hairball: after all, the kid loves carpet fuzz more than any other food group---but alas, no obstruction (we had to subject the kid to an NG tube to do an upper GI series. Hallie was in serious emotional and physical pain over this particular aspect of our ER visit). At least we've ruled this out.
In the end, what we're left with is a diagnosis of reflux and delayed gastric emptying. We're not sure what caused the flare up and why Hallie isn't able to process food and poop as well as she had been able to in the past. Perhaps it's the antibiotics she had been on in August and September; maybe it's teething (she is veritable drool factory right now); maybe it's the change in formula from pediasure to nutren, jr. to nutren jr. with fiber (and now to pediasure with fiber). Maybe, like in the NICU, she finds it hard to process 30 calorie/ounce food. Perhaps the simply thick is simply constipating.
We've decided to focus once more on diet in the hopes of managing this beast: We're adding probiotics and we're trying Hallie on a mixture of goat's milk (supposedly easier to digest and closer to breast milk than other forms of milk) and Enfamil AR powder (to add some calories and more nutrients), and less in the way of Simply Thick. We're trying to remain optimistic, but that is getting pretty hard to do.
Meanwhile, I bought a lot more laundry detergent, because if there is one constant in our life, that's it.
10 comments:
Gosh I hate that for you guys. FABULOUS picture, by the way. I was wondering if you'd thought at all about Domperidone instead of Reglan. I know that it's not available in the States at regular pharmacies but can be filled at compound pharmacies with a Doc's prescription. As many kids that were on Reglan in the NICU in NC, MORE were on Domperidone when I came back to Canada. It has been the miracle drug for me with my milk supply and could work for Hallie. Just an idea.
Poor Hallie Rose and her mamas! That really is such a great picture...I'm sure that it will be one of her favs when she is older and reading through her blog.
Amelia was on reglan while in the NICU, and just after discharge. I never noticed any bad side effects from it at all. I'm really keeping my fingers crossed that Hallie confuses goats milk with mommy milk and that this new combo will be the cure to all of your woes! We're thinking of you guys!
hi guys,
just a thought (i know you've already thought of and tried EVERYTHING) but...simply thick really slowed down avery's already very delayed DGE. she vomited way more when on simply thick than without. ironically, our GI started her on the simply thick additive to try to minimize reflux associated vomiting. go figure. if memory serves hallie needs the thickener due to micro-aspirations (is that right?) so i'm not sure you have many options, but i thought i'd just mention our experience. LOVE the photo...it's priceless.
your friend in vomit,
ashley
mom to avery and brooks
24w6d
Oh, poor little Hallie! I am so sorry that things continue to be such a struggle, you ladies all deserve a break!!!
Thinking of you and hoping you get some relief soon!
Yikes, what a photo! Maybe bring that photo with you to your next GI visit so he/she can see Hallie in action. I hope the goat's milk diet works, if not I can teach you the fine art of making homemade goat cheese.
Oh my goodness, I thought Hallie was eating a breadstick! I hope things resolve for all of you very soon and Hallie is able to get back onto the weight-gain train.
I'm so sorry to hear that things aren't going well in the whole GERD/vomit/weight gain issue that seems to consume so many of our lives. I wish more than anything that we could find that magic answer (and quickly I might add!). I don't remember if you have tried erythromycin with Hallie yet or not (serious sleep deprivation with Eli's aspiration pneumonia and I am half brain dead right now). Many kiddos are finding more success with e-mycin than with Reglan to help speed motility on DGE.
As for formulas, have they tried Peptamen Jr yet? We tried 31cal Neosure, Peptamen, and Nutren Jr all with NO GROWTH and when we finally switched to Peptamen Jr, Eli's growth took off. It has literally been a lifesaver for us. Since it's elemental with a high MCT oil ratio it is easier for kids with short gut, DGE, and slow weight gain.
Hugs to both of you and to little Miss Hallie. I hope things start taking a turn for the better very soon.
I'm sorry Hallie is going through all of this. I will not even try to put myself in your position, but I do know the occasional times EJ pukes, it is completely gross and nasty and it is a lot of laundry, so I definitely feel for you. I know it must feel like you are running an uphill battle...trying to get Hallie to eat and gain weight all the while wondering just how many calories did she throw up today? But you are great Mommies and you are trying options and doing what you can as parents to take the best care of Hallie. We are thinking of you. Just how many times is she throwing up per day so I can get some perspective?
Hallie's vomit varies. A good day involves one vomit---hopefully not a big one. A bad one, which was pretty much most of last week, involves a big vomit about every other time we tried to feed her, and lots of spit ups in between. The reglan, though, does seem to be working, and the goat milk is much easier to digest. So we're now down to one big vomit at some point when there's been a technical difficulty (bottle too thin and a big choke, which happened Saturday night; food too close to bottle, which happened yesterday). We are hoping that a very firm schedule, meds, and goat milk at the right consistency will help. Stay tuned. But it is totally gross and really disturbing to watch and boy oh boy do I want a vomit free day today! This is a lot to hope for because our record lately is a big fat zero, but a mommy can dream, can't she?
Yikes, but what a great picture! Yes, your picture brought tears of laughter to my eyes. If we can't laugh about it, we'll cry.
I don't have any wisdom but I just want you to know I feel your pain. A good day IS only one vomit! Today, we had leaky mouth. Basically, it was a day full of wet burps all day and only one projectile.
I'm thinking of you guys!
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