Friday, June 28, 2013

Childcare - Ugh!

Childcare (Ugh!)

I could have also titled this post "Thank God this week is OVER!".

As I considered becoming a SMC I thought a lot about childcare and my support system.  I had originally planned on daycare but knew there would still be tough moments since my family does not live nearby.  While struggling with infertility, when I allowed myself to think about having my baby I thought more along the lines of a home daycare or nanny-share with neighbors.  Of course, those situations could cause significant issues should an unexpected need for back-up care arise.

And then I had a micro-preemie.  And my childcare options were immediately limited to exclusive in-home care.

Let me back up and provide an update.  In June I exited the Au Pair program with about 6 months left to go.  I don't want to go into the details but will summarize... live-in help was not the right child-care option for me.  

As someone who has lived on my own for nearly 15 years, I struggled with sharing my house.  While my house is ideal for a roommate/AuPair situation - the entire 2nd floor is guest space, I bought a TV & installed Direct TV for the AP bedroom - that only works when the other person living in the house wants their own privacy as well. I was "sucking it up" for months and as a result getting moody/bitchy.  I felt like it was impacting the time I would never get back with Ella.

It was a hard decision because AP and Ella loved each other but when I finally decided to be true to myself and told the AP I needed space/privacy, she shut down - wouldn't respond (literally head against the wall).  Shortly after that I learned that I still had a short window of time left where I could recover most of my money from the (remaining) program and decided to let her go.  Thankfully, she found another family to finish out her last 6 months in the US.

Before I made the decision official I put out feelers with our local neighborhood mom's group for nanny recommendations.  I was surprised at the number of referrals I received.  It was good timing as well as I was open to summer-only help, to get us by until I could find long-term help.

I ended up with 2 really great nanny's, one was long-term and the other was summer only.  In choosing, I went with the summer-only (Nanny J) based on my gut.  She is an experienced sitter/child-care provider and an EMT who is waiting to start with Medic this Fall.  She is really good at getting on the floor with Ella and supporting her therapy/homework which is VERY important given Ella's delays.  She was also eager to learn to use Ella's g-tube.

Part of my decision to go with her was strategic as in the long run she could be a good sitter/back-up care option for the future.  Someone familiar with Ella and her needs (although those are ever changing).

On Thursday of her 2nd week of work, Nanny J got sick.  She was perfectly fine and chipper when she got to work but upon coming home from a walk with Ella before noon she was coughing and sneezing.  She said she feared she might have the virus that was going around her house...  

That's enough to freak out a micro-preemie mom!  I sent her home to rest.  I spent a lot of time that afternoon trying to find someone to come keep Ella on Friday without much luck.  During Music Therapy that afternoon I mentioned my dilemma to the therapist and she recommended her sitter, who used to work for her company and is a kindergarten teacher. AND she didn't work for her on Friday's.  I took her number and called her based on that information.

I had to go into the office downtown for a couple of hours on Friday.  As great as the sitter was, all I could think is "I'm leaving my baby with a stranger".  It worked out well and I'm actually trying to get her to come back next Friday for another gap in childcare due to the holiday.

Long story... a tad bit shorter

I assumed Nanny J would be better by Monday.  Sunday night (the weekend is a whole other story I'll never find time to blog about, so just know we had a LONG weekend because I volunteered to do something that was too much for Ella), late I get a text from Nanny J saying she had been better but her fever spiked again.  So unexpectedly I was without care on Monday.  Due to our long weekend I emailed my boss and told her I was taking the day off (as I call it, a mental health day).  

Nanny J thought she would be better to come on Tuesday, so she did, and wore a mask (because yes, I have masks in my house).  I came out of my office close to noon, took one look at her and sent her home.  

Remember, as a 25 week micro preemie, a virus would very likely put Ella back in the hospital.  While I was concerned about the nanny, it's more about Ella.

I immediately started reaching out to contacts to try to find someone to watch Ella on Wednesday.  I had to be back downtown for a few hours, plus I simply needed to get work done.  I've been up late every night this week trying to catch up on work that i have not been getting done because I've not had childcare this week.  

Unfortunately, what this experience has taught me is I do not have a good back-up care plan in place for Ella. I contacted at least half-a-dozen people.  Everyone has plans/a life.  Even if there was an option to drop her off somewhere, I can't just take her somewhere because 1) she wont eat for anyone but me  2) since she wont eat the caregiver has to know/be willing to use her g-tube. Since I don't have anyone on my list that fits these needs the alternative is the caregiver needs to be in my house, since I work from the house (with a few exceptions) and can jump out of my office to feed/tube Ella when necessary.

I ended up having a not-yet-well Nanny J come back on Wednesday to keep Ella because there was no other option.  I had to work, I had to be downtown for a few hours as well.  Sometimes in your work there is more pressure than normal to perform... this is where I am with work right now.  I need to work, to focus on work.  And taking a risk with a not-yet-well Nanny J was the risk I had to take.

So far Ella and I are okay.  Let's hope/pray we stay healthy.

Thankfully, Nanny J seemed much better today!

So... I have just added a new item to my super-long priority list (which doesn't include blogging but I do this when I can because it is a needed outlet) is to make up a flyer to send to the local nursing schools.  My intent is to have a list at least 15 people long (vetted) who I can call in a pinch for back up care... one after the other until I find someone who is available to help.

In the meantime, my house is a wreck, I have not cooked in a week, laundry is piled up and I'm behind on EVERYTHING.  There has been no time for anything this week except for work & Ella - and work suffered. 

This has been one of those tough SMC weeks... I knew what I was getting into and I love everything about it... but I have been extremely challenged due to the circumstances of lack of childcare this week.

Tuesday, June 18, 2013

Summer Bucket List (aka Ella & Mommy's Summer of Fun)

About a month ago I saw the 'summer bucket list' blog posts crop up in various blogs I follow.  At first I dismissed it, thinking that it didn't apply to Ella and me given her age and her developmental delays.  BUT... the more I thought about it, the more I realized that it is PERFECT for us!!  I signed right up and started making a list.  

We have our own 'rules'... (if there are official rules I've not taken the time to figure out/read them... we've made this our own)

1.  "Summer" is a relative term. Our list really encompasses our freedom from RSV isolation season.  
Ella spent her first YEAR isolated from the world.  There is a good chance (doctor consults pending) that she will have to have some level of RSV isolation next season as well.  Summer is not simply June - July - August....  it is April through October...  from doors open to doors closed for our lives.

2.  Activities on the Bucket List Can NOT be therapy related
Ella already gets 5 - 6 hours of therapy a week, plus homework daily.  No therapy goals or events are to be a part of our Summer of Fun activities.  

3.  It is okay if we don't do EVERYTHING on the list. 
In particular, as much as I want to take a trip to Florida I just don't know if that one is feasible.  I WANT for us to get down there to visit family and friends (September/October-ish, not July/August - I'm not crazy!).  Riding a horse is dependent on our trip to Florida, my niece is an accomplished rider and has access to a very gentile pony.

4.  We can Add to the List as we desire.  Any suggestions?

Our 2013 Summer Bucket List
  • Go to Discovery Place Kids
  • Go to a Splash/Fountain Park (done)
  • Take a trip to the Mountains (done)
  • Go to the zoo (done)
  • Go out for Brunch
  • Play in the Baby Pool at Home (started, needs some work)
  • Have new Professional Photos made
  • Swim in an Outdoor Pool
  • Go to the Nature Museum
  • Take a trip to the beach/Florida
  • Take swim lessons (in process)
  • Have a Picnic at the park
  • Build a Fort
  • Go on a Hay Ride
  • Ride a Horse
  • Host Supper Club
  • Have Play Dates with...
    • SMC Families (done)
    • MicroPreemies
    • Others

Thursday, June 6, 2013

Goals (and Omegaven on Rock Center Friday)

A couple of weeks before Ella was discharged from NICU the Early Childhood Intervention (ECI) Coordinator met me at Ella's bedside to assess her and to discuss/write goals.  Ironically when she first assessed Ella back in September she said she didn't qualify for Physical or Occupational Therapy because she had not missed her developmental milestones (yet).  

Given that Ella was at such a high risk for having developmental delays that wasn't good enough for me.  I worked with the NICU social worker to get therapy arranged for home.  But I digress.  

When the ECI coordinator asked me what goals I wanted to write up for Ella I really had a hard time with that.  What are my goals for her?  To be healthy and develop just like any other child!  Other parents don't have to write this stuff down as goals.  

  • During mealtime, Ella will take all of her food by mouth
  • During playtime, Ella will show interest in her toys
  • During playtime, Ella will enjoy participating with others and independently reach & play with her toys

Much of this stems from my ongoing denial about Ella's special needs, since that day in the Emergency Room when the doctors & nurses tried to reassure me that having a baby at 25 weeks, usually the worst case is they have Cerebral Palsey.  Well, first of all, I was too drugged up and didn't have my phone or computer to research more about this wonderful worst case scenario they were trying to sell me on for the baby I had expected to be full-term and healthy until that moment.  More about this when I finally write Ella's birth story in detail, another post I have not been able to bring myself to write yet (either due to time or emotional capacity to deal with it).

Most parents can't imagine writing such goals for their baby as I listed above.  I mean, that just comes naturally.  People don't really think about it consciously, I don't imagine (I can't say for sure since I don't have another frame of reference).  Of course parents support their children in learning to do these things and celebrate their accomplishments, but they don't have to consciously think of these things as goals and write them down.

And work with therapists multiple times a week to get there...

Ella has a very good team of therapists assembled now.  We had to weed through a couple for certain specialties but I like her team now.  Her PT & OT have been with us since we were discharged in September.  

This might be a good time to clear the air.  

Therapy is not fun.  It is work.  E

lla used to cry through all of her sessions.  After her line was removed she began to tolerate therapy more, but still had a limit of how much she could take.  

And at 14 months old (this Sunday), she still dislikes tummy time.  She cries through commando crawling.  Sidelying is a form of torture.  

But she is making progress.  It is slow progress.  I am so proud of her, she works so hard every day!  

I came to a point of acceptance some time ago that I am happy with her doing things in her own time because I know she will get there and that it's the right way for her.  She still has to work hard for it, but she can get there in her own time.

That doesn't mean it's not hard for mommy too sometimes.  I feel it more now that we are able to get out into the world and socialize with others.  

At a playdate I'm the one who still has to hold my 14 month old on my lap while younger kids are sitting on their own, crawling and running around.  At Kindermusic or Swim Lesson, my daughter is the one who is over-stimulated and clinging to me, crying through the session.  

And why can't I get through making a matter-of-fact statement to my Financial Advisor that we need to take into account in planning that my daughter may have long-term special needs without feeling that shimmer of tears gloss over my eyes?

I am so happy!  And I am so proud of Ella!  But I do feel occasional pangs of jealousy toward parents who don't have to give these things a second thought.  And that they don't have to write goals for their little ones to eat, reach, grab, show interest in toys, sit independently, crawl, walk, talk... and the many unknowns to come.

Jen, this video is for you... working on sitting independently is NOT fun sometimes.

Rice - sensory play with OT.  And outdoors!  Mommy just wanted to make sure I didn't eat the rice.

Hands & Knees - Hard work.

Hands & knees practice in PT

Grandma watching work on the ball with a PT/OT Co-treatment session

Distraction during PT


It's ironic that at the end of this post I am switching gears to something I am so thankful for in regards to Ella's current state.  You see, as much as I express my feelings of frustration and jealousy above, I know things could have been very different.  If it were not for this wonderful drug Ella may not have survived or would likely be doing extremely poorly and on a transplant list for a new liver and intestines.  

Last June, Ella's direct biliruben levels had peaked at 11.1 (normal should be under 0.2), meaning her liver function was being severely compromised due to the IV ongoing nutritional support (TPN). Right before Ella's 2nd surgery her doctors told me about Omegaven.  It is a lipid (fat) made from fish oil rather than plant oil that has shown amazing results in babies with liver disfunction.  It is not an FDA approved drug.  Our hospital had used it on occasion for other babies and knew how to file the paperwork.  It took about 3 weeks for FDA approval to come through so they were able to begin administering Omegaven to Ella in late July.  

If you recall, one of the primary reasons we had to wait on discharge from NICU was that since Ella was going home on TPN, paperwork had to be resumitted to the FDA for approval to use it OUTPATIENT.  Oh, the hoops that have to be jumped through...  well, after 2 weeks of waiting for a response from the FDA we learned that the paperwork had been sitting on the wrong desk at the FDA and it was being resubmitted AGAIN to the right area.  At the same time there was an Omegaven shortage and Ella would have to switch back to lipids while the Omegaven was unavailable.  

That's when the NICU doctors and I talked again.  Ella's direct bili had dropped so significantly to 1.7, she really didn't need lipids (fats) at all, not the standard lipids or Omegaven.  While Omegaven at home could have benefited her, the fact that she didn't need regular lipids anymore meant that it wouldn't be inflicting additional damage on her liver.  This is when we put in place the very sudden discharge plan for Ella.  Yay!

Ella's direct bili continued to drop after coming home on TPN without lipids.  By December she was under the normal threshhold!  And I credit Omegaven for that... and so much more.

Check out the story on the controversy of why the FDA has not approved Omegaven on Rock Center tomorrow night.  I am so thankful Ella was able to get it, hoops and all.  Like Dr. Puder says, how can you tell a parent so desperate to save their child that they may be in the "control" group of the study and not get the drug that has already proven to help so many?