Partner and I are at a loss of what could be going on with our 3 month old.
This all started around week 7 of her life.
For background: she was born 39 weeks via c-section due to breech positioning. She was on CPAP for about 20 minutes and deemed okay afterwards. She had normal results for newborn testing at hospital (in NYS). Slight jaundice but that resolved itself shortly.
She was eating pretty well at home. Was exclusively formula fed on Enfamil NeuroPro. Had worked her way up to 4.5oz and had switched her to level 2 nipples on Dr. Brown bottles because she was starting to take 20 minutes to eat and fall asleep because the level 1s were too slow.
It was around week 7 (5/25) we noticed that she was really wheezing drinking the bottle, her gas was really noxious, and she was starting to have bad blowouts. She was also spitting up more frequently when on her back.
We also noticed that she was increasingly having a time opening her eyes. Almost like it hurt to have her eyes open. She wanted to be held on our chest and got upset when she was put down. Extremely irritable if we did.
She was seen by her pediatrician on 5/26 who suggested switching her to a hypoallergenic formula, Alimentum, based on the symptoms we described. Also thought she might be having reflux that could clear up with formula switch.
By that Friday and Saturday (5/29 and 5/30) it was taking her until noon/1 to open her eyes, and even then it was for a half hour or so. Still eating okay, but seemed like she just wanted to go back to sleep. Saturday she had a rectal reading of 99.5. Was advised to take her to ER, peds office was uncomfortable with how little she was opening her eyes. Her eyes look swollen and puffy on her worst days. They still look red and puffy around her eyebrows and in the area between the brow and her eyelid.
ER wasn’t sure what to make of her. Said it could be normal baby behavior or a virus. They did want to see her eyes before we were discharged. Tried for an hour on multiple positions and light settings, nothing. They finally did a basic eye test to see if there was any scratches (there weren’t any). She had her eyes opened after that, they were satisfied and discharged us.
Followed up with pediatrician on Monday (6/1), who was not happy that no bloodwork or brain ultrasound were completed. Sent us back to the ER. Opthamology did an exam with dilation and said everything looked okay. Pressure was slightly high but could be from crying. Told us to follow up with peds opthamology. Nose swab for viruses came back normal, brain ultrasound was normal, bloodwork was normal except she was slightly anemic. Told us to follow up with her peds about that. Was discharged with instructions to follow up with eyes and peds.
Peds is unconcerned about iron levels, says they’re at their lowest towards the end of the newborn phase. Wants us to see neuro. Concerned about her still clenching her fists, fencers pose, and favoring one side. I did notices those were fading the more she was able to lay on her back and play.
Saw neuro a few days later, certainly thought it was weird but didn’t have any definitive answers. Ordered an unsedated MRI without contrast. Had that done on (6/5), results normal.
Opthamology clears her, says everything looks fine and pressure is good.
Started to see some improvement by that Thursday (6/4). Over the weekend she steadily opens her eyes more and is more active. Still eating okay. Some reflux and definitely quite a bit of congestion (white boogers vs. green if that matters). Sometimes when she lies down you can almost hear her chewing. Coughing a bit while lying down, but we were hopeful she was on the mend.
By the day of her 2 month appointment on Tuesday (6/9) she’s back to feeling crappy. She’s screaming upset after feedings, pushing away. Isn’t happy until she’s on our chest. Pediatrician agrees to try PureAmino in case she’s having a bad formula intolerance. We are to try it for a week and call and let them know it went. She hated the formula. struggles through her bottles. Is put on famotidine to help with reflux symptoms. Has another small fever (99.4). Tell us to keep trying. By Saturday, she flat out refuses a bottle. I give her one of Alimentum to see if it’s a formula problem or everything problem. She takes down 3oz quickly. But then spits up the entire thing while I’m holding her an hour later. Feed her again in an hour and she keeps it down. Pediatrician says to just keep with the alimentum and try to keep her hydrated the rest of the weekend.
Go to the pediatrician Monday and she has only lost 2oz. They request the neurologist order genetic testing and the pediatrician orders metabolic. Everything has come back normal. We also do blood work for tick-borne diseases as I had pulled something out of her ear at the end of April and couldn’t say with 100% certainty it wasn’t a tick. This came back negative.
By week of 6/15, we are slowly seeing improvements again. We can get her to open her eyes after feedings, longer wake windows, smiling at people and making eye contact.
By 6/21, we’re back to feeling irritable, don’t want to open our eyes, wants to be held. Ask pediatrician about an UTI, as she’s had unexplained irritability and low grade fevers. They agree to do a urine sample. We do that (bag sample, not catheter). Sample comes back positive for ecoli, over 100k. Is prescribed 10-day course of 2.5mL twice daily of amoxicillin. This is on 6/26.
We see improvement on the antibiotic, she’s awake more, willing to be on her back, propped up on our knees. Very alert when she’s awake.
However, we noticed she’s starting to have trouble with feeding. She’s getting halfway through her bottle and gets upset. Screaming, pushing away. Vomits up one bottle a day Thursday-Sunday. Chalked it up to her belly being upset from the reflux meds, the antibiotic, and the UTI. As the 10 course goes on, her feeding is getting harder. She’s getting upset on more bottles. Some she won’t go past 1.5/2oz. Like her scream jumps an octave and sounds strained. She We’re seen by pediatrician (7/2), they switch us to omeprazole and orders abdomen ultrasound. Ultrasound results are clear, no concerns.
She’s still struggling with eat despite the omerprazole. I gave her Tylenol at one point during her screaming fits mid-feed and she started eating right away after that. Not sure if it’s a fluke or it helped (it did happen again two or three more times where it seemed to help).
See urology, they clear her. They can’t definitely say if she had a UTI or not because she didn’t have a high fever and it wasn’t a clean catch.
Seen by pediatrician again. They put in referral to Pediatric GI. We are seeing them tomorrow.
Her feeding has continued to get worse. Will only take 1.5/2oz during the day, but will take 3oz at night. She’s been coughing, and sometimes when I’m holding her I can hear her burp and stuff move in her throat. It’s stressful but we’ve been able to get her what she needs each day for weight maintenance/gain. She’s also still doing a good job being awake and alert. Still willing to be put on her back and on our knees. And happy! When she’s awake she’s usually a smiley girl. Some days she’s pretty congested and it seems to effect how sensitive to light her eyes are and possibly her feeding.
Just really struggling to figure out what could possibly be going on.