Lessons Learned After Irma

We are finally back home after evacuating from Hurricane Irma, and, as with each storm,  I’ve learned a few things from the evacuation.

  1. It’s not a sudden emergency.   All this packing and preparation I’ve done every June was over kill.  I’m going to have a week to prepare.  The reason you shop in June us because there isn’t enough for everyone the day before the hurricane.  If everyone in the USA went to the store today & bought 1 gallon of water,  there wouldn’t be enough, yet everyone thinks they can wait until the hurricane comes to go shopping.
  2. With my fibromyalgia, I can’t just pack up and leave.  That means we have to leave earlier & stay closer.  We need to leave earlier, stop more, and spend more money on hotels.  On the way out, it was a rush, we waited,  so we had to drive straight through.  When we stopped, I couldn’t walk.  I had to stand & lean against the van for several minutes until my back & legs could bear weight, much less move.
  3. Only Verizon works in North Florida.   We had a 3-car caravan & lacked the ability to communicate.  So everytime granny had to pee, we would look in our rearview and realize we’re a car short.  Which also meant doing the ‘cell phone juggle’ to determine which phone we could use for GPS.  Paper maps would have been useful could we have found them.

Diapers & Hurricanes 

What do the two have in common?  Lots of traveling.  I’ve been meaning to wrote this for a long time, now I’m bored, and, after a 7-hour road trip turned into 12 with a 5-month baby, I figured now is a good time to share.   For those who don’t want to read on, our favorite is Huggies,  they are the least bulky & the least leaky.  Keep in  mind, every baby is different,  their skin is different. My one girlfriend had one baby get a rash from Huggies & the other from Pampers.  Babyfry reacts to Luvs and develops a rash overnight.  If you’re really strapped for cash, generics have improved immensely since my son 11 years ago & we have had no problems with them. Our only complaint is that they tend to fit poorly.  The Members Mark tend to get crooked & crawl up her but and they fit really big.  Parents choice was a very comparable diaper.
A great way to save money on diapers is Amazon Prime Autoship.  I made excel spreadsheet,  compared prices, and this really is the best deal.  Buy the large pack, 200-300 diapers, and it’s cheaper than buying in store.

Huggies comes in several styles.  First there’s little Snugglers or Any N Dry, the main difference being price.  Then, at size 3 (18 pounds) we found Little Movers, which sounded like a really great idea.  Designed for wrigglers, has double Velcro so it doesn’t get crooked, can buy it predestined so you can slide them on like pull-up on not pre fastened.  We quickly hated these.   Twice the Velcro meant twice the fighting with wiggly baby to fasten the diaper, and the first set always folded on itself and had to be opened a second time creating twice the work.  And slipping them on?  Hahahahahahaha!!!!!!  We have hardly put pants on little miss kicky,  I’m not even going to try pull-ups.

Oh, and buyer beware, I was in the store and saw Little Snugglers with this tricky double Velcro system.  I’m still hoping this was just a really vivid nightmare.

Menstrual Cups

I’m really starting to believe that some women just can’t wear menstrual cups.  I’m one of those unusual lady’s with a very low cervix and very heavy low.  99% of you think your flow is heavy, but really,  only 1% of you have a heavy flow.  How do you know which you are?  By what you buy.  If you buy regular products, you have a regular flow.  As I was researching menstrual cups, I would laugh out loud at lady’s concerned a cup wouldn’t hold their heavy flow because a regular pad only lasted them 8 hours.   If that describes you, honey, drop everything and thank God in Heaven for a light period and consider yourself lazy.  You don’t really need a cup, if you did get one, you would empty it once in the morning and once at night for health reasons, be careful you don’t forget it’s there!

For those of us with menorrhagea,  like myself, it’s no wonder doctors didn’t believe us.  For 30 years I have told doctors my period was heavy, but so has the above described women.  Difference is, I overflow 2 supervise products in 2 hours & stain my clothes.  I overflow a menstrual cup in less than 4, it was quite a relief to go 4 hours between changes!  Especially at night.  But that didn’t solve my problems.  As great as that cup was,  it didn’t fit.  While the average woman can rum out to Walgreens, CVS, or Target and grab a Diva cup and be happy for life,  in addition to a heavy flow, I have a low cervix and fibromyalgia.

So my first cup was the Yukki 2-pak, a hard & soft.  The Yukki has a higher capacity while being shorter, but it was still too long. And folding them inside -out didn’t help.  Both were too hard for me to fold, especially the hard one.  After that experience I decided to try the Organicup, it was shallower & softer,  too soft, a complete waste of money.   Apparently, even after kids & over 30, my muscles are stronger than average because it wouldn’t open up,  so I can’t comment on any other aspects of this cup.

Now, with a 5-month baby & the return of my heavy menstrual cycle I figured I was ready to try menstrual cups again.   So I researched the charts & picked out 3 based on shorter length, higher capacity, & softer.  I figured at 40 & a 5-month baby softer would be good.  I chose the Lena, Lunette, & Moon Cups, read the reviews on Amazon & picked the Lena.  Probably the last time I buy a cup,  and not because I like it.

I like the Lena, the texture is smoother,  softer, less noticeable once inserted.  But with my fibromyalgia,  I still can’t seem to keep it folded to insert it.

The Lena in particular seems too soft to open after being inserted and leaks, but is hard enough & long enough to cause painful cramping, even the smaller one.

So I researched “unusually short cervix & heavy flow” & found this old blog, and a few other.  I’m considering buying one more cup,  the shortest I can find, now that I’m back on the topiramate & my flow will be really light. But do I get firm or soft?

Whammy Day 

Its another whammy day.  Fibro flare, migraine, & shingles outbreak.  My morning breakfast was a pharmaceutical blend.  Tylenol, alleve, & very concentrated coffee shot (double expresso in 2 swallows), zofran for the nauses all that will cause & zantac to protect my stomach lining.  I’ll feel something in an hour, even if its just nausea & vomiting.

Fatigue overwhelmed my insane sense of work ethic & guilt.  I’m staying in bed today.   I slept through my alarm, got up only out of guilt cause my husband has so much to do, but I’m not catching up with him until later.  I didn’t sleep well last night & am feeling it this morning.  Body, face, & head are all so achey. 

I started on LDN Friday.  I thought it was helping, but now it doesn’t feel like it.

Feeding Issues

First, work is so hard, it doesn’t matter the job. Fibromyalgia & migraines, I miss sleeping 12 hours.

Now, the purpose of this post is to follow the babies feeding issues.   I didn’t know such a thing existed, and the more I research, the less I find.  Hopefully, other parents struggling will find this blog too.  And I’ll update it as I learn more. Lets go back to the beginning, 3 months ago.

I knew there was a problem day 1.  Baby was such a noisy eater!  She would click when she sucked, gulp air, then wheeze to catch her breath.   Later we would learn this is called ‘disorganized.’  Add to this the gagging & excessive spitting up, I knew she had reflux.  Fast Forward 4 days, Saturday, my milk has come in, but baby had only 1 peed diaper, very bad.  I rushed out & bought formula, Enfamil Newborn.  Sunday she was lethargic & excessively sleepy.  At our newborn visit on Monday, she had lost 1 pound, almost 20%, which is hospital worthy.  She was born at 90% on the growth charts. We switched her to a hydrolyzed formula, I quit all dairy, went to a lactation expert, but things didn’t improve.  I even went on this extreme TED allergen diet!

By the time we went to WIC at 4 weeks, I had almost given up on breastfeeding, when we heard about tongue tie.  At 6 weeks we saw the ENT & he diagnosed a very mild tongue tie.  There was 50:50 chance that fixing the tongue tie would help breastfeeding, but help with nothing else because it was so mild.  Breastfeeding was so important to us that we decided to do the surgery. 30 seconds that felt like 30 minutes later, it was done.

At our 2 month visit, baby had slid further down the growth charts.  Doc tested for digestive problems, check back in 2 weeks.  By this time I’m only breastfeeding at night, she still clicks her tongue, though not as much.  We aren’t really concerned cause she appears so healthy, happy, cute & chunky.   But doc is concerned cause she still eats like a newborn, 2 ounces every 2 hours.

2 weeks later and baby is down to 10%, now I’m worried.  I ask about her chewing her tongue cause she always chews it on the right, turns it to the right, etc.  Switch to another formula, $60 a can for Elicare!  We get referral to a SLP feeding specialist & a GI.  GI initially says she’s fine because if you measure weight by height, its perfect.  Check back in 2 weeks.  The SLP diagnosed disorganised feeding, but theres more because she just isn’t getting milk into her mouth & down, referral for an OPMS & a nutritionist.

So, the treatment for disorganised feeding?  She gets 3 sucks on the bottle then we tilt it down so she can’t get milk, wait for her to swallow & breath, repeat.  This seems to be a huge help.  I don’t know what you would do if you were bottle feeding. 

I’ve been writing this article for a week and its still not finished. But I’m posting to share what i have so far incase I never finish it.  With hubby sick I’ve been up with the baby, and up for work, and up homeschooling.   I’m taking the baby to spend the night with grandma tomorrow.

UPDATE 8/9, now 4 months old.  Her 2 week checkup with GI puts baby below the growth charts for both height & weight, her height/weight growth has plateaued, & shes gaining around 5 oz a day.  Ideally she should gain 25 oz a day.  We have to bump up the calories in her formula by mixing it thicker, specifically at 24 calories instead of 20 by putting an extra scoop into 8 ounces. The checkup today, another 2 weeks have passed, & she is back on the charts, her height/weight has started growing again.  Specifically, her height is growing as needed, weight a little sluggish.  She is gaining 20 ounces, a little less than needed but much better!  She has been eating/sleeping a lot, going through growth spurts every couple of days catching up.  Stool test showed protein, no blood, not sure what that means when she is on Elicare, which she will stay on for the first year.

In our way to All Childrens for the Echocardiogram to see if she inherited daddy’s IHSS, pray she hasnt.   If she has, then she’ll need even more calories.

The feeding therapist is thrilled with her progress.  And so are we.  She seems to be eating more now that its easierm. At the same time she’s hit the age where she’d rather play than eat.

I Survived 

I’m not suffering as much as expected after yesterday’s exertions.   This morning it was very, very difficult to get up, & I did have a migraine starting. But the excedrine helped.  Today was equally crazy & busy.  The baby was fussy & I carried her around in a pouch for an hour this morning.  Helped my cousins move boxes this afternoon & I am feeling it.  The joints in my knees, hips, hands, & feet are achey.   My arms burn like a marathon & my back aches in its usual way.

I’ve been sticking with the TED, looking into the allowance of herbs & spices.  But I don’t want to change anything until after the freedom swim since I’ve been feeling & doing better.  Hopefully this will continue & I’ll easily complete the swim.  I’m praying I’ve found the cure & this isn’t just a short remission.  I’m 5 days migraine free, so my next one isn’t due until after the swim (every 7ish days).