Sunday, November 23, 2008

Life with Reflux (a mother's perspective).

I've already detailed the horrors of nighttime reflux-induced colic, but here's an account of the rest of the side effects it causes. Sometimes she seems absolutely fine, other times she seems to suffer every textbook side effect of the disease. (Except for poor weight gain- for some reason she's go that down like a champ.)

Reflux babies must be fed on demand- no schedules allowed. That's fine by me since that's how I tend to feed anyway, except that because of the refulx, she needs to eat every 2 hours- sometimes sooner. During the day it is not uncommon for her to need to eat every hour and a half. There are two reasons for this frequent feeding: 1- they cannot or should not consume very much at each feeding. The amount they eat increases the likelihood of and the side effects themselves- namely spitting up and acid. 2- Feeding is a painful experience, and as they are reclined the acid comes up into their throats, burning as they try to eat. Swallowing is painful as well.
Besides being painful, feeding can be an extremely frustrating experience. She starts to feed ravenously and then pulls off either because she is choking, or because it is burning her throat. She pulls off in frustration, cries, realizes how hungry she is, attempts to feed again, repeat ad naseum. Eventually she gets so mad she is frantically searching but refuses to eat. In pain and hungry, we usually abandon that attempt and try again in a little while. Another reason for frequent feeding.
Of course there is the spitting up, but that has been significantly reduced by the Zantac she is on. Of course, she still 'ruins' my shirt several times a day and we can never be without a burp cloth when feeding. She no longer resists the incredibly vile Zantac which is a potent menthol suspended in alcohol. I tried it- it is truly heinous.
Sleeping is also difficult for the reflux baby, as laying down brings the acid up as well. They tend to sleep better on their stomachs, and it is sometimes recommended for severe cases of reflux. We alternate, depending on how she does and how much I need her to sleep. We still eat every 2-3 hours through the night. Sigh. At least she is mostly sleeping in her crib now! I wedge her in between the bumper pads and a boppy, so she feels secure. When she is particularly fussy she sleeps in bed with us, cradled in my arm so we can all get some much-needed sleep.
Another unfortunate side effect is congestion and wheezing. She has been really congested for about 4 or 5 weeks now. Constantly. We are frequently using the nasal aspirator to clear that out as much as possible. This also causing a lot of wheezing and the occasional cough.
Perhaps the worst symptom is gassiness- she is literally constantly gassy. Her stomach is hard and tight as she writhes around seeking relief, alternately pulling her legs p and flailing them about. I am frequently stretching and manipulating her legs, trying to help her. Even when she can pass gas, there seems to be little relief, as thre is always more that we cannot relieve.
So as you can probably tell, there is a lot of discomfort, pain, and frustration for everyone involved. Luckily she is usually at her worst when Bella is already in bed, so Bella doesn't have to stand by and hear the crying for hours, and I don't have to completely neglect her in order to fruitlessly try and soothe Fiona. Last night Fi started losing it right at Bella's bedtime which is a frequent occurrence. Timm was at work, so I had to put Bella down while trying to quiet Fi. The result is me rushing through the story and bedtime routine so I can get out of there and direct my full attention to the screamer. I'm glad that Bella's routine and attention is not any more disrupted than it is.
What I want to know is, why is colic worst at night? What difference does it make? Why do we have some days that go off without a hitch, and still more like alst night? What variables are there? None that I can tell.
I took her to an Ear, Nose and Throat (EMT) on Friday morning to rule out anatomical problems since her choking can be so severe. He scoped her and found nothing wrong there (her throat), but ordered us to go to the children's hospital on Monday morning to take some fils of her to chest. We need to rule out that there could be an anatomical problem causing her to aspirate into her lungs. Once that is clear, and I'm sure it will be, I will be referred to a pediatric Gastroenterologist (GI) who will diagnose reflux based on all of her symptoms. The only treatment we can really change is this case is to prescribe her a more proactive Prilosec instead of the mild Zantac. Colic sometimes improves at 3 or 4 months, but the cause and effects of reflux itself doesn't totally dissipate until their first year.
Oh deem, oh dee.
It's a good thing that I am experiencing this now because I have a better perspective after having Belle. I know that this time really is fleeting, just a stage, and i can only do my best. I am significantly calmer than I ever would have imagined, mostly because I have decided to be. She will scream no matter what, so I decide to be calm and collected. Why add to the misery by getting upset? I've yet to come to tears through through it all. We'll just keep on truckin'.
Incidentally I feel deliriously tired and keep nodding off while I am typing, resulting in almost intelligible writing. My fingers are not finding the proper keys or putting them in the right ordure of that matter so i better try and rest. Ha!
*edited to add* It is several hours later and I reread this post since I couldn't quite remember writing the whole thing, due to falling asleep during the process. I laughed my way through it, counting 16 blatant typos and leaving them all in place as evidence of my state of mind. You may find more...


michelle said...

It sure is a good thing she is so very cute! I'm certain they come that way for their own protection.

I'm impressed that this ordeal hasn't brought you to tears, I don't know if I would be as calm under the circumstances.

I hope you get some Prilosec soon and that it works wonders.

I could tell you were sleep-deprived in this post! Get whatever rest you can.

Susan said...

Oh, dee!!
I guess Ryan must have had this problem and I never knew it! There was no internet in "those days"(!) to inform one of such things! My doctor certainly didn't speak of it!

She is sooooooooo cute and looking way older!

I'm with Shell, get some rest if you can. You'll be on my prayer list.

Jill said...

The self portraits on the two of you are so cute.

This sounds like a nightmare problem for all of you and I'm so sorry. But you are handling it like a champ and I think your decision to choose to be calm because getting upset doesn't help anything is a wise choice.

rmt said...

Poor little Fi. Reflux sounds so miserable. I hope she gets some relief soon.

I am seriously impressed with the way you are handling this. You seem so calm! Good for you.

I think she looks exactly like you in that last picture. Something about her expression just reminds me of you.

Crying Baby Help said...

Reflux may trigger the baby to cry but in order to prevent it, there are ways to follow such as keeping the baby upright after feeding, using wedge pillows and trying not to lie the baby after feeding. In a way this can help to stop the baby crying.

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