Thursday, September 8, 2011

Mommy Guilt

That's what I'm told I'm supposed to feel.  Guilt for giving my charming daughter what she needs!

When I first held her during her first nap she snored.  I asked the doctor about it, was told it's likely just left over fluid and it'll clear up in a day or so.  I took his word for it because he's the professional and the way he worded it made sense.

Life went on.  After a week or so I noticed she had a chronic snotty nose.  Probably just reflux I was told.  Okay, I can handle that, after all my older child had HORRIBLE reflux for the first three years of his life.  I've walked that walk, so no big deal.  Hers wasn't as bad as Mikeal's was, but it was nearly identical, except she still snored.  That bit I was told was just a side effect of the reflux fluid that caused her snotty nose.  She was sleeping through the night, all was well, so okay, makes sense.  After all he's the professional, he'd been doing this for decades.  I'd seen him since I was 12, myself, here I was 25 years old.

Time went on, she made all her mile stones, on time, life was great, she started talking, and boy did she have a lot to say at just 8 months old.  She had a minimum of 25 words she used on a regular, correct basis.  It really helped that she has a brother 5 years older than she who talks non-stop. 

She ended up getting her first ear infection when she was 10 months old.  I wasn't distraught over it, yes she was sick, but my older child had his first one at roughly the same age.

So far, up to that point they were nearly identical...except Mikaila couldn't stand nursing at my breast, she'd fuss, fight, or when she did latch on she had a vicelike latch.  HOLY FUCK was it painful!

Mikeal, my first child to breastfeed latched on perfectly from the git go and it was absolute smooth sailing...outside of that first day when my foggyhead forgot the bit about having to change a diaper too, and let him nurse roughly 8 hours because it was the only thing that kept him from screaming...and he sucked blisters onto my nipples that burst a few days later.  THAT SUCKED...however, we were able to move past that, exclusively breastfeeding for 10 months before I had to go back to work, then we supplemented with real foods until he decided he wanted food & a sippy cup instead of mama milk.  He was great with it, I was okay with it.  All is well that ends well.  Not one time did he have formula, money well saved.

Mikaila, on the other hand, for two months I worked hard to bite my lip through the nursing sessions, often crying out of pain, but I was producing well, was even able to pump an additional 4-6 ounces after each feeding that I wanted to pump so that I could let Mikeal & Brian feed her from a bottle and she LOVED the bottle long as the bottle was positioned just so.  I spoke with lactation specialists, I spoke with my doctor, I spoke with his nurse practioner, had a year of my own personal experience with it, including personal experience with blisters, thrush, mastitis, an unsupportive, abusive husband, I tried nipple shields, etc.  Anything they threw at my I tried and I became exhausted & depressed.  By the 3rd month of her life we switched to formula & bottles and life was happy again.  I didn't fail, I provided what worked best for my family, what made my daughter happy and healthy.  I succeeded!

But, as I mentioned, before backtracking, Mikaila had her first ear infection at 10 months old.  Mikeal only ever had 2 his whole life, but I had experience with them with my nephews who had chronic ear infections, so recognized all the signs early, took her in, she was given the standard ear drops & antibiotic, all was well....except...

By the time she was a year old I noticed she'd nearly quit talking.  She was doing more tantrum throwing, she quit sleeping through the night, and life became Hell.  My depression set in, the fingers were pointed at me for not putting her on a consistent enough schedule, not doing this right, not doing that right, you name it, I was failing.  The professionals told me so, and I believed them...not really, but I was supposed to, so I tried all the crap they told me to try with her.
Mikaila & her Uncle Bradley (my youngest stepbrother)

A few months later the bad behaviors were only worse, not better.  I took her again and again to the doctor.  Was given antibiotic bottle after bottle or a pep talk on the importance of schedules and sleep in infants/ if I didn't know this or something, fuck I only had a 6 year old child who thrives WAY above the charts in everything, I tend to think I know what I'm doing.  But I was failing with my daughter.  She wasn't talking, she only screamed, she didn't sleep, would only nap 4-5 times a day for 10minutes -2 hours at a time and I was EXHAUSTED.

I lived near my mother, sister, other folks ones would think I could count on to be supportive of me, but instead they only added to the guilt I was already feeling.  Depression dug her claws in deeper.

I googled everything I could think of, talked to other mothers, was eventually left with the impression that I needed to take Mikaila in for more testing.  Specifically testing for Autism or other similar diagnosis.  I needed help and I wasn't getting it.

She underwent all the tests they threw at us.  Vision screenings were good.  Hearing screenings were good.  Just her behaviors were a bit off, but she wasn't consistent with her behaviors.  One week she'd appear to be fully on the spectrum, the next week she seemed normal, just didn't talk.  At 18 months old we started the occupational therapy with a therapist that came to the house once every other week, or so.

After a few months *I* noticed that if I spoke LOUDLY to her or included gestures to specify what she may need or want she didn't scream as much.  I mentioned it to the therapist & the doctor...and was told then to just continue and was given a book in baby sign language.  WHAT THE FUCK!  My daughter's hearing screenings came back good, she didn't quite meet the proper guidelines to be labeled as autistic or as having any actual disability because nothing was ever solidly regular.  Sometimes she was, sometimes she wasn't.  I was told it was just a short coming of my own, because I wasn't consistent enough with her.  Pile on the guilt.  After all, these are the professionals, and I know nothing about any of this.

By Mikaila's 2nd birthday my body was shutting down.  I'd gone almost a whole year with no more than 1-5 hours of sleep a day.

A few more months of OT and no real progress.  We did discover melatonin around Christmas and for about 2 months my life was GRAND!  I was able to sleep!  Still not more than 4-5hrs at a time, but a MASSIVE improvement over the 10-30 minutes of sleep at a time.  Then the melatonin effects started becoming hit and miss and back to the guilt being laid on for drugging my child because I was just too lazy to do everything else that we'd already tried to get her to sleep.

We moved from Oklahoma to Tennessee when Mikaila was 27 months old.  I immediately sought out the Early Intervention program to restart her therapies here and learned SOOOO much!  To start with hearing screenings and hearing TESTS were two totally different things...the screening showed that her hearing was perfect, but her behaviors showed differently.  A referral from the new doc and she was on her way to having a test ran on her hearing by an ENT.  The ENT noticed that she had quite the build up of fluid on her ear drums.  I told him she'd been on antibiotics almost all of the last year for 'ear infections' that weren't quite ear infections, just the beginning stages of one...ear infections without the redness & fever, just the fluid.  Clue #1.

He prescribed a round of antibiotics stronger than amoxicillan, went back two weeks later, fluid still there.  He had also noticed that her adenoids were inflamed & her tonsils were LARGE.  July 1st, when she was 2 1/2 years old she had surgery to remove her adenoids and have tubes put in her ears.  She was a bugger to wake up from the surgery and never fully woke up, but did eat the popcicles they gave her and fought us when we'd try to wake her up, after a few hours they sent us home anyways.  She slept for almost 24 full hours, straight.  I worried and fretted over it the whole time.

When she awoke it was like she was a totally different child.  Normal talking bothered her GREATLY, fireworks bothered her, whereas the year before she could sit right under them and fully enjoyed them, she had to cover her ears after her surgery.  Within a week she was sleeping through the night and her daytime behaviors were so much less frustrating for both of us.  Mommy guilt started lifting.  But then it was quickly added back in by persons who blamed me for not getting this taken care of earlier.  You know, because the professionals were incompetent I should have known that.  I did suspect it, but when you live in the middle of nowhere where there are only two doctors, only one of which accepts your insurance you're kinda limited on what you can do on an extremely limited budget.

By the time Mikaila aged out of the Early Intervention program her assessment was that she just needed speech therapy.  She was transferred into the preschool program at the elementary school and life has steadily gotten better.

She goes to bed every night at 8pm and 90% of the time is asleep within 10 minutes, she gets up between 6am and 8am, and life is as it should be with a 3 year old who only has a speech impairment.

A few weeks ago, on the 25th of August she went in for a sleep study because she still snores, still has muffled speech, etc and due to the HUGE success with the adenoid removal & tube placement I wanted to look into the option of the benefits of removing her abnormally huge tonsils.  You would think this would be a good thing, right?  I have competent doctors who have tried things and we've had GREAT success.  No, instead I get more outsider guilt piled on because I'm now 'mutilating' my daughter because I'm a lazy/unfit parent and don't seem to want to take responsibility or something for my daughter's behaviors & muffled speech.  By these 'professionals' (meaning persons with longer life experience/multiple more children experience) my daughter is behind because of me...and for some reason my son excels, even though my daughter's life has been EASY in comparison to his at this age.  I won't lie, until he was about 5 years old life was a constant inconsistent rollercoaster.  If all the experts and professionals had a cookie cutter clue my son, who is 'perfect' child material - if you take off the tween attitude - should be an absolute hellion who's flunking kindergarten, still.  He just turned 9 and in the 4th grade gifted program, give me a fucking break!

This past Wednesday we went back to the ENT for the results of the sleep study.  Her sleep score is comparable to that of a 500lb, 50 year old man, who smokes 3 packs a day.  She's 3 1/2 and weighs 37lbs and doesn't smoke.  On several occasions her oxygen level dropped below 80%.  Not good, at all.  Her tonsillectomy is scheduled for October 10.  And I am HAPPY about this.  I am looking forward to my wee daughter having surgery, again.

She was cursed with my larger than normal tonsils & adenoid tissue.  I can't do anything about that, that tidbit was the way the genes fell, but I can do something about improving her quality of life.  Lay more guilt on me.  Such a horrible mother I am for being relatively excited over her having surgery to remove her tonsils with the hopeful expectation this will further clear her airway so she can breathe, eat, talk, sleep, etc like a normal healthy child does.

Special tribute to Caryn (@ihave7monsters) and her post about her own 'Professional' run Mommy Guilt here.  We, the mother/father/fulltime caretaker of children, ARE the professionals when it comes to our children.  Just because someone has a bunch of debt and fancy letters after their name doesn't mean they are right when it comes to our children.

Edit to add:  My bouts with depression have gotten a bit better.  I'm getting more sleep & Mikaila has made progress with talking so life doesn't seem as damning.  The support from friends is great, both online and offline; professionals are doing their job - addressing my concerns and sending us off to specialized professionals when the concern is  out of their specialization.  It is still a work in progress, I am still battling some personal health issues that became quite exaggerated during Mikaila's first few years of life, but these problems didn't just suddenly appear, so they're not going to be quickly fixed.  Everyday is a new adventure and life is relatively good.

****Update October 26, 2011****

Mikaila had the tonsillectomy on October 10th.  

So far we have been able to notice that her speaking is MUCH clearer, it no longer sounds like she has cotton in her mouth.  Still has some delay, but quickly gaining ground & catching up.

Mikaila no longer snores at night.  Absolutely the most heart wrenching thing to be laying by your baby girl, who for almost 4 years has snored every night of her life, and then notice that you are not hearing her breathing...took me almost a week to stop rousing her while she was sleeping, just to be sure that she was just asleep.

I have also not noticed a single runny nose, not even an inkling of a runny nose.  I had noticed a difference after her adenoids were removed in July of 2010...but with the removal of the tonsils & regrown adenoid tissue I can't recall a single runny nose.

Her daytime attitude is MUCH better.  She sleeps all night now that her throat no longer hurts, and life is peaceful...once we get past the bedtime battles 2-3 times a week.


  1. In a VERY rare display of profanity from my end, fuck the people that say they know everything. Know why I love our pediatrician? Because the first thing he told me 13 years ago was: "You know your child. I see your child for 15 minutes every few months.If you come in and tell me there is something wrong, it's my job to find it." And he has.. every time.. until Logan's mystery seizures. But he's not afraid to tell me when he doesn't know what to do, either. I'd rather have him tell me that, and send me to someone that can help us, than have him do test after test that he knows won't give us the answers we need. Good post, m'dear! LOVE!

  2. Wow Stephi. I'm sorry you had to go through all of that because like the previous comment, bottom line, we as Mamas know our children better than anyone. Good for you for pushinf oast that guilt every single time to keep finding the answers for your daughter. im glad things are much better and you're both sleeping!! Whew! Shame on you for needing sleep! ;) Thanks for sharing...hugs.