Long time, no post. Oops. We've been busy post-diagnosis enjoying a happy, healthy baby who sleeps well and can now eat peaches and coconut (and likely potatoes-almost done with that trial-luckily we were at the end of our mid-trial break for all of this, so we're pretty confident this has nothing to do with our potato trial)! She's back to sleeping 12 hours at night and not even waking up for a bottle if we can get enough food in her during the day. No random night time screaming, gaining weight well, everything we hoped to see.
...until Wednesday night. Around 9:30pm Myra was coughing in her crib, but going back to sleep, so we let her be. She started to whine, so I went in to feed her but kept the lights off. I've gotten in the habit of feeling her sheets for vomit since that has happened a couple times and there was a damp spot, but she drools a lot so I ignored it. I put her back down and she slept for a while then started coughing again. She was pretty restless then started crying along with the coughing. At about 10:30pm I went into her room and turned on the light this time and there was vomit all over her crib. I scooped her up, went to get Trevor and asked him if we should head to the ER. FPIES babies can go into shock from vomiting if they are having a reaction. There was no known ingestion of anything other than her safe foods, but I'd rather be safe than sorry and the vomiting reminded of us of past reactions (frequency, intensity, quantity). Trevor suggested waiting to see if it would happen again, and as he was saying that Myra vomited on him and he said, "yep, we're going in." While I packed a bag (not knowing if we'd be there all night) she vomited on him again. Like I said, there was nothing known that she ate, but it was also her first day in daycare so I wasn't with her all day. Now, let me pause right here and say our new daycare mama is wonderful. She's laid back and bubbly and cheery and her house was very clean (not even just clean for a daycare house, but truly very clean!). Myra had a great day there, loved all the kids, they loved her, she napped really well, and ate only her safe foods. We know daycare is in some ways risky because kids are messy and there's not a 1:1 caregiver:kid ratio, but as far as we can tell our provider is as good about food safety and cleanliness as one could expect. That said, some FPIES kids are so sensitive they react to cross contamination of food residues on things like toys. We have had no reason to believe Myra is that sensitive, but in that moment of Myra having what appeared to be an FPIES reaction the night after her first day in daycare my heart sank. Again, not because we suspected any fault by our provider, but at the thought that Myra could be one of the kids who is that sensitive-then where would that leave us? I was excited for her to be in a good daycare, make some new buddies, have a wonderful part time job opportunity doing something I love, the extra income, all of it. We could get a nanny, but truthfully we like the idea of a daycare setting. So, I fought back tears as all these thoughts were running through my head as I flitted around the house packing a bag to bring to the Emergency Room because my baby wouldn't stop vomiting. We were all already exhausted (Myra after a very busy day of playing with new pals, me after a marathon day at my new job, and Trevor after being away for two days). As we loaded Myra into the car, she vomited again. I ran back into the house to get some burp cloths (yep, those still come in handy Christy, Amy, and Jen!) and a change of clothes for Myra. (Side note: we did notice a rash few little red pimply type dots on Myra's face when we put her to bed, but she has pretty sensitive skin so I figured that could have been a million things with which she came into contact at daycare and neither of us was really concerned about it. Don't mind the scratches, she did that to herself last week!)
As I drove, my heart was racing and doing some funky extra beat thing (no idea what that was all about...). Oh, I should point out that between vomiting episodes, Myra was all smiles. She was waving, saying, "hi! hi!" and as we put on our coats she was saying, "bye bye!!" So, rolling up to the ER saying our kid is really sick and should probably get put on fluids ASAP while she is smiling, waving, and saying hello to everyone probably made us look a little silly. We showed the ER letter to the admin guy, but that didn't seem to put them into any sort of rush. Myra vomited again in the waiting area and they gave us one of those lovely little vomit bags as if we could politely ask our infant to aim her vomit. Anyway, we eventually got a room, got checked out by the nurse then the doctor. They kept a copy of the letter, said she looked healthy, vomiting aside. She was still smiling, crawling around the bed, waving at people, only really fussing when they had to mess with her (not a fan of the tongue depressor). Myra got some Zofran to help with the nausea (no idea how effective that is for FPIES, but we weighed the pros and cons and decided to give it a shot). Her vomiting appeared to be done anyway, but we felt so helpless. She drank a little bit of her bottle at the ER which was comforting. We got home around 2:30am, got her ready for bed, she drank a little more, then slept til 8. (Regarding the rash: it seemed to get worse while at the ER and we noticed a red rash on both of her wrists-not sure if that was related or not. She may have even rubbed her hands in puke so it could just be from that.)
Most of the day she refused bottles completely. I got her to drink maybe half an ounce a couple times, but she really wasn't interested. She did eat some of her peaches though. She wasn't quite herself, but I figured all that vomiting (it is pretty intense vomiting), dragging her to the ER in the middle of the night, and just being tired would explain that. Heck, even just the busy, fun first day at daycare could have made her extra tired, not to mention the added chaos. Myra napped normally throughout the day. I did call our daycare provider to ask if she had any idea if Myra could have gotten into anything or if she had any ideas at all. She mentioned Myra didn't drink as much as she or I thought she would have. I hated making that call because I completely trusted her in the first place (and still do) and there's really no way to ask those questions without sounding at at least a little accusatory. But I had to ask. We're still figuring Myra out-we don't know if she is one of the rare super sensitive to trace amounts reactors. Or, if there was a known accidental ingestion of something, if that were the case the timeline would have been helpful for us, too. The only way we know how Myra reacts and to what is by experience; there's no test for any of this. So, we try to at least learn something if possible.
Assuming that was all behind us, we kept our plans to visit Trevor's cousin and his family for dinner. Myra ate some peaches there and played with all the kids and new toys, but let us when she was tired and ready to go.
She willingly drank a couple ounces before we left then a couple more when I put her to bed. She immediately started crying when I left the room, but I figured she was just wiped out and needed to settle a bit before going to sleep. I turned on the video monitor and saw a big spot on her mattress. I went in to check it...more puke! So while my first thought was to get Myra cleaned up, I was also wondering is she sick with some type of virus? Was last night not an FPIES reaction after all? Is this why she was refusing bottles all day, because she still wasn't feeling well? Again, with her previous FPIES reactions, once the vomiting was done, the reaction was done. For her to refuse
foods/bottles for a full day then vomit again would not be typical of
her past reactions, but she's only had three so I don't know how much of
a pattern we can call it. Myra had been to a babywearing meeting, ECFE and daycare in the last 5 days-it very easily could be a normal virus. Trevor and I both wished (and still are wishing) one of us would get sick to confirm it was some type of contagious viral thing. Only an FPIES parent could understand that!
We got Myra cleaned up again and rocked her for a bit. She passed right out. After a while, I put her in her crib and she slept all night until 7 waking once to eat at 2:30, she took her whole bottle with no hesitation. So far this morning she has had close her normal amount of formula, some peaches and a normal nap. I got her to eat some ice since she wasn't a fan of water yesterday. I sent our daycare provider a text to tell her it may, in fact, just be a virus and asked if she could let me know if any of the other daycare kids end up sick (none yet). I just wish there were a clearer way to know.
Ah, one of the hidden difficulties of FPIES...always wondering if they are, in fact, reacting to something or if it's a normal baby/illness thing. She's also got two teeth on the brink of cutting through her gums. She hasn't been a difficult teether at all thus far, but I'm sure teething doesn't help matters and could even have something to do with refusing bottles and food. At this point, my gut tells me it is more likely viral than an FPIES reaction (not sure about the rash stuff?) because her other reactions have been done once the vomiting stopped, even though the initial vomiting so closely resembled her past acute reactions. But maybe my gut is more optimistic than it should be. But really, I just wish my gut would vomit so we could settle this once and for all!
UPDATE: We're definitely going with virus on this one. Trevor and I were both sick this weekend, same symptoms Myra had. Plus, she threw up again Sunday morning twice. I guess that's good news, but it doesn't mean it has been fun!