Our Little Owlet: Clarity

Yesterday was Asher's appointment for his surgical consultation. I've been SO anxious for it and dreading it at the same time. My sister, who is an in-home pediatric physical therapist, asked one of her clients for the name of their daughter's surgeon (their little one was born with some pretty severe and fairly permanent challenges). We scheduled to have Asher see him many weeks ago, as I felt more comfortable seeing someone who came highly recommended as opposed to a blind referral from our pediatrician. I. AM. SO. GLAD. WE. WAITED!!!!!!!!!!!! We saw the pediatric surgeon, Dr. R., and he was phenomenal. He was pleasant, kind, warm, patient, understanding, empathic, and he took a great deal of time with us.

1) He confirmed Dr. O's suspicion that Asher DOES in fact have an epigastric hernia. More on this in a minute.

2) He also confirmed that another one of the bumps he has (one that he's had since birth, which was NOT the reason for this consultation) is harmless and is just his "xiphoid process" (bony piece of cartilage at central base of sternum that usually goes away in infants but seems to still be there for him due to his belly distention).

3) He also confirmed that one of the alarming bulges (a long, snake-like protrusion between his abs all the way down his midline) is a "diastasis recti", which is exactly what my sister said it was. He told us that this was harmless, and that it should repair itself in time... Usually in newborns this one is self-repaired by now, but he said in some kids (like Asher), it can take many many years, sometimes their entire childhood to finally grow back together.

Back to the initial reason for the consult... He told us that the epigastric hernia (a small protrusion below the sternum bump and above his belly button) will NOT repair itself, and that the only "cure" for it is surgery. He said that it poses no real danger at this point, saying that unlike other hernias (umbilical or groin), there is very little risk (he said he'd never seen this happen in all his years) where an obstruction would occur (organs pushing through the muscle wall). He said epigastric herias in babies are often just fatty tissue protruding and there was very little danger in just leaving it alone and monitoring it for now. He said sometimes they can cause discomfort/pain, but since we can't have Asher tell us if it hurts, and since it doesn't appear to bother him, we aren't going to assume it's hurting him and do an unnecessary surgery. The surgeon also explained that it's a super simple out-patient procedure, that it takes about 15 minutes once in surgery, that it's closed with 2-3 stitches, and one that takes only days to recover from. He went on to talk about the risks of general anesthesia with little ones and how it's typically the best option to wait as long as possible, as the risks are higher with babies/toddlers. He said if the hernia was really worrisome to us he would repair it now, but seemed to agree with our overwhelming desire to NOT do surgery at this point. He said if it was him, he would wait until Asher was at least 2 or 3 years old. He said if it got bigger to come back, but told us otherwise we didn't need any follow up appointments until we wanted to have it repaired surgically. He said we can wait years to do the surgery if we want, in order to wait to see if it bothers Asher, if it worsens, or to just let him get older so it's less risky and less scary. He will have to have surgery eventually at some point to repair it since it won't go away on it's own, but the fact is that we don't HAVE to do it. We are SO THANKFUL for this positive outcome with this fantastic surgeon! Of course we don't want Asher to have a hernia at all, but that's not something we can change, so the fact that this is the course of action seems like the best case scenario by far. Thank you to those of you praying for him and us, and thanks to those of you who have even followed this and who have expressed care/concern to us. Since the midline bulge is harmless, and since the surgeon believe surgery is not absolutely necessary at this time for the epigastric hernia, we are planning to wait it out indefinitely to see if it grows, if it begins to bother him, and we just want to let him get older so it's not so scary and risky.

A couple of weeks ago Asher's pediatrician recommended a series of blood tests, including a celiac panel, a test for liver function, and a test for intestinal function. All of the tests were negative/normal. It's frustrating but not surprising. EVERYTHING I've read says that you should not do a celiac test on kids under 2-3 because it will almost always be negative (even if they have it, there isn't enough damage done yet to yield a positive result). She has referred him to a pediatric GI specialist as a next step. We are VERY hesitant to do this, based on our horrific experience with "Tomato". We want to know what's plaguing Asher. We want him to be safe and healthy... but they have already tested him for allergies and have tested him for celiac among other things. He had an upper GI done (Barium swallow test, not a scope) when he was an infant and it was inconclusive. The thing is, I'm not sure what a GI doctor could help with at this point. We aren't open to doing anything invasive with him at this point beyond blood testing. What's the point, really. I don't want him to go under general anesthesia to be scoped or to have a biopsy done when I'm pretty sure it will be inconclusive. It's horribly invasive, it can be dangerous, and would be terrifying for all of us. It seems taking things into our own hands, as we did when I decided to switch from dairy to soy (which by the way, was against the recommendations of the first worthless GI doctor he saw) might be the best option. We haven't entirely ruled out a GI consultation for him just to have it on record, but I doubt we will go down that road right now. It seems that a series of food challenges/rule outs might be the best course of action for us, as everything I've read (which is a ridiculous amount) suggests that for food intolerances, a strict dietary challenge/change is by far the most conclusive way to tell if there is an issue or not. For myself, the doctor that did the celiac panel on me has referred me to a GI doctor as well. She will not do the IgG test that I specifically requested, and just says to see a GI doctor. No thanks. I found a decent naturopath in the area, but insurance doesn't cover "alternative" practices, and we can't afford all of the out of pocket up front expense (though I think it would greatly help me personally with what I believe to be a food intolerance causing my GI issues along with my chronic joint pain and fatigue. We did an egg trial with Asher and though he doesn't seem to care for them, he's not intolerant of them as I originally thought. The first and only time we had previously given him eggs was when he was just under a year old. He got a rash on his face and a horrific diaper rash as if it burned his skin instantly, so I assumed he was allergic. Looking back through my insanely detailed log (thanks to our ipod app), I realized that when he had eggs that first time, he also happened to be on his first ever round of amoxicillin.... the second time he was given amoxicillin he had a terrifying allergic reaction so I connected the dots and realized that what I saw was probably not from the eggs at all, and was probably a reaction to the meds (allergic reactions can be mild the first time, but much more serious/pronounced the next time the child has the food/med). We plan to do a corn trial next, as I've suspected a corn intolerance for a long time, but it's impossible to know for sure. The reason we are doing these first is that it's 100% certain he can't have dairy. I've suspected along the way that corn and eggs were also a problem, and if it turns out gluten is also a problem, there's literally nothing left he can have aside from meat and raw/fresh produce. All gluten free items and recipes, like 99% of them, contain either dairy, a corn product or derivative, or eggs. So, if he can't have dairy already, and if we do a gluten free trial, I need to be able to use eggs and it would be really nice to not have to avoid corn products (flour, tortillas, etc) too. We plan to all go gluten free, as I suspect it might be my issue as well, and if Ash and I have to do it, I don't plan on shopping for and preparing separate meals for the rest of eternity. I told Ross he can still have separate things with gluten, but when it comes to dinners, it's all for one! Anyway, that's the most up-to-date update I can give you! Aside from all of this craziness and a week of a terrible stomach virus for Ross and myself (fairly certain it was the sucky norovirus which was NOT FUN, but Asher seemed to only have a very mild version, praise Jesus!), things have been decent for us. After three canceled trips due to illnesses on both sides, we were FINALLY able to celebrate Christmas with Ross' family a few weeks ago when his parents came down to visit. We had a fantastic time! Asher's little cousin, Emery, turns 1 tomorrow and we were able to celebrate her birthday this past weekend which was also a blast! They are growing up SO fast! Asher will be 18 months old on Saturday! We got his 18mo pics taken a few weeks back, and I'll post them below. Be prepared for a ridiculous amount of pictures...

His cousin, Ainsley Grace, snuggling him as they watch the kids getting off of the bus :)