Wednesday, October 22, 2008

October 22, 2008 @ 7:18 pm AKA GERD Mania

My last post seems like ages ago. I can barely remember the last time I was able to lay Janna down flat for tummy time without her suffering from reflux and an aspiration attack. I’ve got a full out GERDling (gastroesophageal reflux disease).
The last month has seen many sleepless nights and many restless days with me trying to manage Jannas symptoms and researching strategies for managing GERD effectively.
I keep joking that Janna is the most expensive baby on our block. Here’s why:
Essential GERDling Gear:
  • Dr. Browns Bottles
  • Hypoallergenic formula (if not Breastfeeding)
  • Breastpump with storage bottles (still attemping to feed some breastmilk even if she can’t take it directly from the source.
  • Simply Thick™ to thicken feeds to help avoid asperation of vomit or excessive “spit-up” (commercial thickener for formula as intollerance of rice thickening only worsens symptoms for Janna)
  • 30 deg angle for sleeping (RESQ wedge) *very good investment!
  • 30 deg angle foam for chaning table *can get this cut at a foam shop
  • 30 deg pillow for feeding (pollywog brastfeeding pillow works when Janna’s symptoms aren’t too horrible)
  • babycarrier – one that doesn’t make me carry weight on my back for long (I own 4 different carriers now)
  • Hug me Joey – Infant car seat adapter (most infant car seats are seated too deep to be tolerated by GERDlings.)
  • Infacol (Simethicone to help with gas)
  • A multitude of burp cloths/ receiving blankets
  • 4 strain Probiotic (they need rebalance as the meds will put them off) we picked up a hypoallergenic formulation from Kirkland Labs in Oregon.
Meds
  • Novo-Ranitidine (Zantac) an H2 blocker that works intially for immediate relief but often will eventually stop working because the stomach develops more receptors to compensate for the blocked receptors that signal when to produce acid. (Tachyphilaxis) *www.reflux.org/reflux/webdoc01.nsf
  • Omeprazole/Lansoprazole. PPI or Proton Pump Inhibitors are the best for relief and chronically perscribed last because they are “off label” in Canada or not necessarily approved for use in infants. Studies at the university of Missouri have demonstrated the effectiveness and safety of PPIs for longer term therapy.
It’s been a tough haul but we are getting there. With thickened feeds she no longer spits-up/vomits 30mls of her feeding. With the proper meds I hope to stave off feeding aversion (which we were beginning to see signs of before we started the Ranitidine and it actually worked well for a few days!) We start Janna on the Prevacid w/Bufferbabies as soon as the Bufferbabies carrier for the Prevacid arrives from MARCI.
Even with her change table at 30deg I still have to perform the “quick change” to avoid reflux episodes and we can only lay her down on a 30deg sleeping surface 1hr after a bottle. She arches almost constantly now unless she’s drinking from her bottle. We did see a cessation of this while the Ranitidine was working.   We’re now back to the arching and her dose of Omeprazole (which we’ll keep her on until we have the Prevacid ready to go) still does not seem to help even after a week of being on it.

Again she was sleeping better in the first few days of Ranitidine dosing but she’s gone back to sleeping maybe 4-5 hours at night and usually being up most of the day with the exception of a 1 hour nap and a small handful of cat naps during and right after feeding for the past few days. Today has seen her have more sleep during the day than usual but it’s hard to tell if it’s due to omeprazole finally beginning to take effect or plain exhaustion. She fell asleep this afternoon twice during her bottle, once after the first 20mls and dozed for 15 minutes and then again after the next 20mls and stayed asleep for an hour and 20min. Falling asleep during her bottle is something we see quite often, and often after only the 20mls. I think this is because the liquid goes down her throat and gives her temporary relief and then the exhaustion kicks in and she falls asleep.


We’re still working on solutions, every week sees us trying something different or new.
These sites were very helpful:

www.pollywogbaby.com (for essential gear)
www.marci-kids.com the online home of the Midwest Acid Reflux Children’s Institute
www.reflux.org the PAGER site a non profit group dedicated to the provision of information and support to parents, patients and doctors about Gastroesophageal Reflux (GER).
www.infantreflux.org a forum for parents managing GERD symptoms in their children.

So to close, we’re not out of the woods yet.  Not even close but at least I feel like we’ve found a marked trail.

Thursday, October 2, 2008

October 2, 2008 @ 12:45 am

After being negligent in updating the blog for over a month and receiving several inquires after little J I figured I’d better get to it.  She’s napping so I’ll take the opportunity.
Little Janna is keeping me on my toes.  She doesn’t cry and everyone says I should be grateful for that but I have mixed feelings about it.  We’ve had some friends share stories of their children as babes and I’ve discovered that not crying isn’t completely abnormal but it still bothers me a bit.  She’s very quiet for the most part and will let out the occasional sigh or vocalization and she does make a quiet “ahh ahh” sound when she wakes.  I hope to hear more of her little voice as the next month passes.
She’s pushing herself up at a 45deg angle during tummy time and almost able to roll herself over onto her back.   That makes me smile.  She does rarely give me a little glimmer of a smile herself from time to time but not often.
We’ve been working through some wicked acid reflux.  I can’t lay her on her back for long without having her spit-up which makes changing poopy diapers an interesting challenge.  Along with the reflux she has episodes where her eyes open wide, her face red and she pushes her chest upward and arches her back with her mouth agape. She looks like she’s trying her best to breathe and not choke.  The first time I saw this it scared me quite a bit.  When this happens I hold her upright and still and just talk her through it making sure she’s able to breathe.  We do this until the episode subsides.  I’d purchased several crib wedges to help keep her slightly upright while on her back they seemed to help a bit in the beginning but her symptoms only got worse and now they do not help.  As a result and to what I’m sure would be the horror of public health nurses and doctors everywhere; we’ve abandoned the normal “back to sleep” policy and she sleeps on her tummy or side with me always close by and my ears tuned into any sounds she makes.  I’ve gotten quite good at knowing what sounds could mean trouble.  After doing some research I discovered GER and found that she’s not alone in her symptoms.  We have a doctor’s appointment later this week and I look forward to discussing this and exploring strategies with her GP.
The breastfeeding never caught on.  Soon after we came home from the hospital she developed a bad case of thrush and was having difficulty feeding on a bottle so trying to BF was really not appropriate for her at the time.  It took several weeks for her to get over it and once she did we tried a bit again but in the end I decided it wasn’t worth pushing her to change from the bottle when I’d be going back to work in two months so I’ve kept the sessions relaxed and typically give up trying after 20 min.  She has nursed 3 times - but she is very difficult to get latched.  I’m still pumping.  Surprised?  I am.  Although I’m not as concerned about supply as we’ve got her on formula as well as expressed breast milk.  With her spit-ups and gas we’re still trying to find one that works well for her.  Her gassiness is worst overnight with her sleeping in 30-90 minute snatches between bouts of writhing, burping and spitting up before and after her bottle.  Our most recent choice has been Enfamil Gentlease.  I’m not sure it’s an improvement over anything else we’ve tried (we’re on our third formula switch) but it does have less lactose and the milk proteins are partially broken down so from a composition perspective it should be better for her.  I want to avoid giving her soy because from what I’ve read it can increase the risk of peanut allergy later on.
What else can I say - for the most part she seems like a “normal” if quite work intensive baby.  Here’s some photos to keep everyone an opportunity to say “aaaawe”.