Paige's Predicament

I've been absent from blogging due to an excess of medical drama at our house lately.

I blogged recently about how Paige wasn't a good sleeper or eater; truth be told, my blog barely scratched the surface on those issues and in the two weeks leading up to Christmas, things started spiraling out of control.

It started when Paige began waking up crying every hour at night and wouldn't sleep more than 15-30 minutes during the day. Even in her swing (which was our go-to for guaranteed sleepy time), she would wake after short periods of time (day or night). Talk about exhausting. (She didn't even sleep the duration of an hour drive to San Antonio for Christmas--aren't babies + cars supposed to = magic sleeping time?)

We figured it was a growth spurt or the result of her cold. I took her to the pediatrician who checked her ears for an ear infection, her chest for congestion, and explained that her stuffy nose may be making sleeping and eating difficult since at this point she's still an obligate nose-breather.

During this same time, Paige's eating also started to take a turn for the worse. At the beginning of December I did a two day "study" on how much she was eating vs. how much milk I was producing. (I was motivated both by curiosity and a selfish desire to see if I could pump less and still keep up with her eating needs.) At the time, she was eating 17-20oz/day of expressed breastmilk. (See previous blogs about the drama and decision to bottle feed her.) By New Year's weekend she was down to ~80z/day.

Not only were her feeds small (or non-existent), but they were filled with screaming. Paige would root frantically for her bottle, take a few sips, then start arching her back screaming. We would get her calmed down only to restart the process minutes later. At a good feeding, we'd somehow manage to get her to eat an ounce. It was exhausting and frustrating to listen to her screams and see that she was still hungry, but unable (or unwilling) to eat. Add on to this the strange phenomenon that she had stopped having regular bowel movements and we were worried. I know breastfed babies poop less often than formula fed babies, but 7-10+ days isn't in the normal range. We weren't sure, though, if it was just related to her lack of intake.

We thought of and tried everything: Maybe the milk is too hot? too cold? Maybe it's the bottle? (We tried a new brand of bottle as well as putting her back to the breast.) Maybe she wants to eat in a more/less reclined position? Maybe she needs a quite dark room? Maybe she needs soothing sounds/music? Maybe she needs to be swaddled? Maybe she only likes it when _____ feeds her? Has she forgotten how to eat? Does she need gas drops? Does her dose of reflux medicine need to be adjusted?

The week after Christmas I had had enough. I was at the end of my rope and I actually video taped a feeding session and brought the footage to our pedi. Since our usual doctor was booked, I saw another doctor--and by coincidence, he was the same one who prescribed Paige the refulx medicine around Thanksgiving time at the after hours clinic. He remembered our case, watched the video and was extremely sympathetic. He explained that sometimes the reflux medicine he prescribed doesn't work--it just reduces acid, it doesn't prevent the creation of acid. If Paige's problems really were related to reflux, she might need to be on a different medicine (that has to be specially compounded at a pharmacy that doesn't accept our insurance), and she may be reacting to the pain of damage in her esophagus due to chronic refluxing. In short, he gave us a new prescription and told us to come back if things hadn't improved in a week.

The weekend following our visit and new medicine, things got even worse. She wasn't sleeping at all, and her feedings were out of control. Like I mentioned above, we were lucky to get 80z into her in a nearly 24 hour period. I went back to the pedi on Monday after I dropped Reese off at school.

Monday's visit came with a call to a pediatric GI, some new ideas, and lots of horrible tests.
Ideas: She has a UTI, metabolism/absorption problem, kidney/liver/pancreas function issues, a REALLY horrible case of reflux, or a milk/soy protein allergy.
Tests: a cath to get a urine sample (it took many horrible attempts to get just a tiny sample), a blood draw (took multiple sticks since she was dehydrated), an abdominal ultra sound (to check her anatomy), and an upper gi.

It all resulted in a lot of tears for Paige and Mommy, a trip to Dell Children's hospital, and a few sample cans of some hypoallergenic formula.

All of Paige's tests came back normal--her blood work was fine, her urine culture was clear, and her parts are all in the right place. So, we're left to assume that it's still related to a food allergy, bad reflux, or both.

After a few days on the new formula we were having mixed results, so we went to see the pediatric GI specialist at Dell Children's Hospital. He listened to the story of our experience, checked Paige thoroughly, and gave us a plan of action as well as a follow up in four weeks.

Right now, we're currently:
1. Feeding Paige the hypoallergenic formula (and hoping things improve, since we don't really want to have to put her on $100/can amino acid formula); this means I've decided to stop pumping/breastfeeding completely. I've got too much going on keep pumping with the idea that she'll eventually go back to needing my milk; and if she's got an allergy to a protein in my diet, I've decided I'm not going to try and survive on celery and water chestnuts just so I can keep producing milk that won't give her issues.

2. Putting her to sleep in a bed at 30 degree angle. Yes, you read that right: 30 degrees. It looks ridiculous, and we had to rig up a head support system with a quilt shoved beneath the legs so she doesn't slide down it all night every time she wiggles. It's supposed to limit the reflux while she's laying down.

3. We're continuing with her medicine, but trying a new form prescribed by the GI. It's the same medicine and the same dosage, it's just compounded at home using water. It's supposedly "more bio-available" and absorbed/processed better.

4. Giving her suppositories "up to daily" for the next month. It took almost a week for her stools to stop looking like breastmilk stools and for us to be sure that she passed all the barium that was used in her upper gi testing. No one feels good when they're irregular.

So...after a full week of these procedures, we're seeing improvements. Her tummy issues have settled dramatically and she no longer cries in pain when passing gas--and she doesn't sound like a machine gun who's passing gas all day either. Almost all of her feeds are screaming free lately--at least 80%+, anyway, even if they are still somewhat small in volume. She's only getting up 2-4 times a night, and every once in a while she'll take a nap that lasts more than an hour. Through all of this, she has remained a happy baby, and for that we're grateful. We just hope that through all these adjustments we can make her comfortable during her eating and sleeping times too.

Until then, I'm a mommy with cabbage in my bra and all my digits crossed.