Wednesday, July 24, 2013

Brief Snippets of our Current State

I'm having blogging withdrawals.  I don't know what will come between the beginning and end of this post, but I need to post. I miss having the ability to spend time writing and editing... this will be another quick & dirty post.

First 'normal' illness
Ella and I ended up with a respiratory virus a couple of weeks ago.  The only source I can nail down is Nanny J.  Thankfully I handled it okay, I only had one miserable morning several days in and felt like a new woman by the afternoon.  Ella came down with it the day after my miserable morning.  It was a little pitiful as she wanted to self-soothe by sucking on her paci but she was so stuffed up she couldn't breathe and suck her paci at the same time... but it took her quite a while to figure that out, and it made her unhappy.  We had a few rough nights but overall she handled her first 'normal' illness quite well.  I'm so thankful I still have our Nap Nanny.  I know it was recalled but I will not change my mind that it is one of the best purchases I've made for Ella, so versatile and the ONLY reason we slept at all those few rough nights (elevated her stuffy head). 

Bottle Feeds
I've said for quite some time that Ella has a love-hate relationship with her bottle.  Back in May the new GI started treating her for silent reflux, because while she didn't show signs of reflux, she had multiple risk factors.  When we started the EXPENSIVE (non-insurance reimbursed) compounded medicine she quickly showed improvement in her bottle intake (by mouth).  Our speech therapist - who has been a wealth of information since we found her - told me that other parents on this medicine have complained that it looses effectiveness toward the end of the bottle.  The $80 bottle lasts less than a month and about 3 weeks in, sure enough Ella would refuse her bottles.  She'd cry whenever I got the bottle near her.  Once I bought a new bottle she enjoyed her bottles again.  

One of the best sources of information is the various Faceb.ook groups that I'm part of related to Ella's diagnosis.  I had read that some children were on Prevacid tablets  instead of the compounded reflux medicine.  This was not on the top of my priority list for some time but I finally got around to calling the GI about it a few weeks ago - toward the end of our 3rd compounded bottle of medicine losing effectiveness.  

They called in a Rx for Previcid solutabs.  We started on 1/2 of a 15mg tab daily.  I couldn't tell a difference, but then, she started to get sick so I couldn't really tell what was causing the problem.  We had our 2nd appointment with the GI on the 15th and it turns out the dose was too low for her size.  We went up to a full 15mg tab daily... but, I was having lots of trouble getting it to dissolve and put it through her g-tube without clogging it up - so there were several days where I questioned how much of the dose she got.  Dealing with a clogged up g-tube first thing in the morning (spending 30 minutes+ trying to unclog it) was not a way I wanted to start every morning.  

I reached out to the FB group again for suggestions on how to give the medicine.  So far it's been better using cool water (you would think hot water would dissolve it better) and breaking the tab in half, using 2 syringes of 3/4tsp cool water to mix and administer.  

Seriously, these details will drive you nuts!


Had Ella not had her g-tube she would have been admitted for dehydration the week she was sick.  She didn't take a bottle at all from Tuesday - Tuesday.  She took ONE partial bottle on Tuesday (from Grandma, much to my surprise) and didn't take another partial bottle until Saturday night.  Monday night she drank an entire 165ml bottle!  It has been 2 - 3 months since she's drank a full bottle (and longer since the one before).  She has drank at least a partial bottle at every feeding since (4x's/day)!  This is huge!

Ella continues to enjoy her puree's.  She only lost her appetite for them while sick for a couple of days.  We are up to these feedings 3 times a day!  She still is not crazy about her fruits but she has enjoyed pears a couple of times.  I did even try a real banana the other morning, which she did okay with.  She LOVES her squash and chicken with sweet potatoes.  She will eat between 5 - 8oz of purees a day.

Overnight Feeds
Because of the increase in eating purees, I have decreased her overnight feeds.  She basically gets the equivalent of one bottle over 3 1/2 hours.  One day I'll write about the tedious details of setting up/unhooking overnight feeds.  It's not a big deal, it's just a lot of precise lessons learned about how to do it while making minimal noise carrying the awkward, heavy IV pole with the pump, feeding bag & ice pack and learning exactly where to step for minimal floorboard creaking. And of course, how to prep the line/extension so you don't stay up all night worrying your child will tangle and strangle herself in it.  Little things like that.

Childcare, oh childcare
Our Nanny troubles have not ended.  Last Monday, Ella and I spent WAY too long at the new GI for our follow-up.  At 11am we were finally checking out from our 9:30am appointment, which means I basically missed a whole morning of work.  I texted the nanny that we were checking out and would be home shortly.  She texted back that she was at my house but didn't think she could work that day.  

What?  Why?  And why are you waiting until late morning to tell me you can't work today?

I texted back that I really needed her to work, she said we would talk when I got home.  When I got home she said she didn't think she could give Ella her best (based on circumstances I'm trying not to share).  I told her that I really didn't care about her best, I needed to know if she could give Ella the minimum necessary to care for her... apparently not.  I told her to go.  

I began to call the handful of people I have for last-minute back-up care.  Two were out of town for the week.  I got one available, but not until late afternoon.  I called my mom - who dropped everything and was packed and on the road within an hour to help me out - since I didn't know how long the nanny would be out or how trustworthy the nanny actually was?  Thank God for Grandma!!  She ended up staying with us til Saturday!

In the meantime, my boss was not hiding the fact that she was pissed that I had yet another childcare issue.  Honestly, I'd be pissed with me too.  Even though it's beyond my control, it's bordering on excessive.

The one thing about having an AuPair, I didn't have childcare issues.  In the 5 weeks since the AuPair had left, I had multiple childcare issues - most of them without notice, putting me and my ability to work in a bind.

And our doctors continue to reinforce that Ella cannot go to daycare, it's not an option.  So my options are limited.

I'm trying to balance the nanny's privacy with my right to share the impacts to our life... and the fact I'm still pissed at the position she left us in.  

Basically there were some long-standing mental health issues that I was unaware of that surfaced.  Background checks on nanny's don't check mental health stability.  

On Tuesday the nanny came by the house unannounced - REEKING OF SMOKE - with a doctors note "writing her out" of work for the week, along with giving her 2 weeks notice.  I told her that I would find back-up care for that last week.

Later, I realized she still had my house key.  I texted and asked her to drop it off.  She came by Wednesday morning, still smelling of smoke, came in the house and asked to hold Ella.  I flat out refused.  I'm a southern-raised, politically correct person, refusing her was huge!  And absolutely the right thing, she never should have walked in the house (I didn't invite her in) or asked.

Interim Childcare
I am SO thankful that it is summer!  I have tapped into several teachers to help with my childcare gaps.  Next week I have another temporary nanny starting.  I'll just call her Nanny3.  Nanny3 has a graduate degree in an area related to Ella's therapy.  She is expecting to start with a company expanding to our city in the Fall and needs work to tie her over.  She is extremely mature (as validated by references) and was excited to see how I maintain nanny & household scheduling.  I think it will work out well although I don't know how long it will be for, it will tie us over until September at the earliest, based on our agreement.

The big 2x/annual consignment event that I participate in is this week.  It takes weeks to prep: sorting, matching, hanging, pricing, entry into the system, tagging, resorting, loading up, dropping off.  It's all done.  I was going to volunteer this week, which gives you early shopping passes (which is ideal, you get first dibs on what you are looking for)... BUT, with the childcare drama I knew I couldn't take more time out of the office so I cancelled my volunteer shifts.  Thankfully a friend is giving me one of her early shopping passes and Grandma is coming back to keep Ella so I can shop for as many hours as I need (without blowing my shopping savings on a sitter).  This is the sale where I get the majority of Ella's upcoming seasonal clothes. The clothes are in great condition and new to us!

1 year adjusted
If Ella had been born on her due date, Sunday would have been her 1st birthday!

Developmental Pediatrician
Saving the best for last... We saw the Developmental Pediatrician for the first time in the beginning of July.  I was very nervous about this appointment.  Bottom line is she said that at this point she does not see indicators of Cerebral Palsy or Autism!  Wow!  While it's no guarantee, it was so wonderful to hear.  I was actually afraid we would get an official CP diagnosis that day. She believes that Ella's delays are as expected for a micropreemie with her issues and she should grow out of them in a few/several years.