Sunday, March 31, 2013

Easter... a year later

I started to write a detailed post on Easter earlier in the week.  Due to time and a bit of an intentional mind-block, that's a post that not going to be finished... not for a while.  Maybe next year.  Here is a quick Easter post with some wonderful photos.


The day everything changed.

The most traumatic day of my life (up until then)... leading to months of anxiety filled, emotional days, and some additional, much more terrifying days.

I look at this face and I am so thankful that she is so strong, such a fighter - that she is here with me.  My heart also hurts that she has had to be such a fighter, face such pain and so many challenges, many still unknown.

I hope that one day I can look at Easter as a day of miracles, as the day is meant to be and is seen by millions.  To me, it was the start of unbelievable struggle and heartache.

I am thankful that I decided to go to the ER that morning, rather than church.  I know that decision saved both Ella and me.

Since Ella came into this world 12 minutes after Easter...

Happy First Easter, my sweet miracle!  I love you!

Easter Balloon - mommy testing out her new camera

Ella's Easter Basket
No Candy...

Happy girl!

Ella's best attempt at a pose

Mommy is so funny, working so hard to get pictures
Okay, are we done yet?

I love to grab my face

Can you believe mommy makes my hair stick up like that on purpose?

Photo shoot is over mommy.  I've had my bath.  Put the camera away.

Tuesday, March 19, 2013

Therapy Guilt

I have 50 other things I need to be doing but I really feel like writing a blog post... to you mom's who can take care of your kid(s), work full time and manage to blog regularly, my hat's off to you!!

Just to put it out there, I'm a good mom!  I'm a really good mom!  It may sound cocky or something like that, but when people say "BB, you are a good mom"... I thank them for acknowledging it... but you know, I agree.

I LOVE this job!

My day's are crazy!  Balance is moment-to-moment and only works with planning ahead.   I feel like I have to prove myself at work, that I can do my job with my home commitments... but at the same time, I will flex my schedule as much as I have to in Ella's best interest.

My goal is to blend it all together and make it work... giving Ella everything she needs while taking care of business.

This week we are having 'extra' therapy sessions, on top of our regular 5 home therapy sessions.  The 'extra' sessions are outside of the house.  This therapy, ABM, is well-regarded in the micro-preemie community.  The therapist is only in town 1 week each month and recommends 2 sessions/day during that week.

Between Ella's regular therapy schedule and my work schedule, 11 therapy sessions in one week isn't possible, not for me and not for Ella (there is only so much she can take).  Drawing that line does NOT make me a bad mom.

I agreed to one session a day for the 3 days he is in town.  That makes a total of 8 therapy sessions this week.  Today, for the first time in months, I needed to be in the office (rather than work from home). I went in after our 8am PT session at the house.  I made it clear that I would have to leave at 3pm to get home, get Ella and get to ABM therapy by 4pm.

This is where I can't explain what's happening.  I do not understand ABM therapy.  I have asked Ella's OT, PT, ECI coordinator, eye doctor and neurologist, none of whom have heard of it.  It has something to do with learning and stimulating the brain's response.  But this was our second session (we did a free "intro" session last month), Ella fussed through it, like the first (after all of the talk).  He puts his hands on her almost like accupressure - without pressure from what I can tell.  I've asked what I'm supposed to expect I don't feel like I get a straight answer.

I just don't understand.

And because Ella was fussy today, he did the hands' on thing, but then recommend that I find another time this week to bring her back.  But I'm bringing her back 2 more times, already on the schedule... but he wants me to bring her back at another time when she will be more receptive because he didn't consider this a real session due to her fussiness.

But we are coming back 2 more times this week... let's see how it goes.

But look at your schedule and see when you can bring her back.

But I'm bringing her back at 8:15 tomorrow...

And so on...

If I knew what to expect... if I knew this would be beneficial for her, I would go out of my way to rearrange my work schedule to bring her back again.  PT/OT... I can see and understand what they are doing and what they are trying to accomplish.

Even Ella's neurologist said that while he's not familiar with this particular therapy, most specialized therapies will produce some kind of benefit because it increases the frequency of specialized support in a given area.

The only thing is.. I have no idea what kind of specialized support or what given area this is supporting.

There is a term in the micropreemie community referred to as 'Therapy Guilt'.  I think that speaks for itself.  I am a really good mom but I am still trying to figure it out as far as therapy goes.  While I'm trying to figure it out, I don't want to lose ground... but what I do want to do is figure out what is right for Ella.

And this mom's instinct tells me that finding a good music therapy program for Ella would be the best kind of specialized therapy for her at this time... I really don't know anything about music therapy.  I do know that Ella has a keen sense of hearing and responds greatly to music.  I never knew the ABC song could be so mesmerizing, but for Ella... it's practically a cure-all.

By the way... after only 6 1/2 weeks, Ella graduated from her helmet!  More on that (hopefully) later.

*My apologies... my usual re-reading several times/editing is out the window.  I'm publishing without rereading after writing at all, not once!  I'd post a picture but my iPhoto is frozen.

Thursday, March 7, 2013


I hate that I have been MIA - from both here and CaringBridge, but especially here,  my blog.  I think about blogging frequently but when the end of the day comes I never get around to it.  I want to get back to blogging because it has been such a good outlet for me for may years, and it satisfies my "inner writer".

I expect it will be a slow come-back... between the usual busy life we lead, add in tax preparation and sorting/tagging some 200-ish items for consignment next week, plus a volunteer shift.

I am starting with rebranding my blog.  I've thought about starting a new blog but for many reasons I don't want to do that.  I have renamed my blog to My Amazing Ella, also my new Twitter handle.

The blog will be primarily focused on Ella and being a new(ish) mommy of a micro-preemie.  I will, of course, write about being a Single Mom by Choice (SMC - the original focus of this blog) and infertility (the focus of this blog for two years).  I believe that my infertility and determination to be a SMC were instrumental in  developing me as a good micro-preemie mommy.

I haven't figured out whether I will update the URL to the new blog name or leave it as is.  It will be a pain to update as it will break links for those of you who still have my blog on your blogroll.

You may have noticed I turned off Anonymous commenting.  It pained me to do that and I debated it a long time as there are a number of you out there who have commented anonymously with wonderful & powerful words.  Unfortunately the spam just got unbearable and since captcha is just awful... it seemed to be the "best" solution at the time.  I may revisit it in the future.

Posts will still be sporadic for a while... I need to figure out if it's my ISP or my wi-fi device that doesn't transmit a signal all the way to my bedroom. I would probably get to read/post more if I could bring my laptop to bed.

I'm beginning to plan for Ella's first birthday... less than 5 weeks away!  But just the thought of her birthday brings back so many difficult memories from that time.  I want to be able to blog about it... for my own therapeutic reasons.

Until my next post, I'll leave you with some photos...  She does smile, I promise!  When you take the camera (iPhone) out for a photo... let's just say she's camera-shy, for now.

Taken at the end of February by my sister who was visiting.  We were at the hospital for the first time in 2 months waiting on lab work.

Yeah... a helmet AND eyepatch (2 hours a day).  She's a pro at taking off that patch!

SuperBowl Sunday

Dreaded tummy time with her favorite book.