Progress

So excited to say that today, June 27, 2013, Ohio Senate Bill 4 (what was known as the newborn pulse ox bill) was signed into law today by Ohio's governor!  Although I can't say I've had a huge part of making this bill become a law, I did contribute, and the small part I had in it made a much bigger impact on me.  It would have been icing on the cake to have gone to Columbus for the signing, but we were just invited yesterday and it has been a very busy week for us.  I'm glad we were there for the important days while it was in hearings.  I am proud of some things we've done in 2013.  All newborn babies born in Ohio will screened for critical congenital heart defects as a part of a routine newborn screen!  It appears that the director of health will specify the screening tools and methods (which for now the method is pulse ox testing and other/future tests have to be as effective as pulse ox screening if something is used).

In March I told our story at the Ohio Senate and in April at the House.  You can read that speech here.  It was definitely not as easy as I expected.  Despite rehearsing it several times, it was hard to stay composed when talking about the best and worst days of my life in front of state senate as my audience.  I wanted to make an impact, but at the same time I hate reliving there, the darkest of days.  It is not a pretty place, but I guess that is kind of the point.  Without scaring people, my hope was that they realized that CHD is not uncommon and happens to normal people, and that there is real importance that pulse ox screening has on real lives.  I'm a real person impacted by congenital heart disease, whose child was saved by observant nurses and pulse ox testing.  Seeing Sofia's bright and smiling face that day at the Statehouse reminded me of full of life she is.  A child who minutes before going to the Statehouse spilled her chocholate milk all down her shirt and skirt and tights.  A girl with a sweet smile and a broken mended heart.  She is really as much of a poster child as you can get for the importance of routine pulse ox screening: uncomplicated pregnancy, undetected critical congential heart defect. 

Sofia goes back to the cardiologist in August and the gastroenterologist in July.  I was talking with her cardiologist on the phone the other day and mentioned we are planning to go to Toronto in a few weeks and that we hadn't been there since Labor Day last year.  Matter of factly, he said that she's a different child since then.  Why yes, she is.  Last summer was a little rough, with her surgery in May.  It look her some time to become herself again, energy wise especially.  She's pink almost all the time now.  Sometimes I just stare at her lips, noticing how pink she is.  I never dwelled on her blueness and am convinced that it was less evident to people who knew her, but in retrospect, she definitely was more blue.

With the pulse ox victory, I wonder what will be next for us.  It's kind of put a little bug in me.  A little voice in the back of my head wondering what I can do next.  What advocacy efforts we will engage in next.  I'm not sure what route we will go, whether it is for children in general or more heart related, but I want it to always be a part of who we are.  Hearts will always be our thing, and we'll always be looking at the world through a different lens with such a special child.  She is a gift.


AN ACT

To enact section 3701.5010 of the Revised Code to require a critical congenital heart defects screening for each newborn born in a hospital or freestanding birthing center.

Be it enacted by the General Assembly of the State of Ohio:

SECTION 1. That section 3701.5010 of the Revised Code be enacted to read as follows:

Sec. 3701.5010. (A) As used in this section:

(1) "Critical congenital heart defects screening" means the identification of a newborn that may have a critical congenital heart defect, through the use of a physiologic test.

(2) "Freestanding birthing center" has the same meaning as in section 3702.141 of the Revised Code.

(3) "Hospital," "maternity unit," "newborn," and "physician" have the same meanings as in section 3701.503 of the Revised Code.

(4) "Pulse oximetry" means a noninvasive test that estimates the percentage of hemoglobin in blood that is saturated with oxygen.

(B) Except as provided in division (C) of this section, each hospital and each freestanding birthing center shall conduct a critical congenital heart defects screening on each newborn born in the hospital or center, unless the newborn is being transferred to another hospital. The screening shall be performed before discharge. If the newborn is transferred to another hospital, that hospital shall conduct the screening when determined to be medically appropriate. The hospital or center shall promptly notify the newborn's parent, guardian, or custodian and attending physician of the screening results.

(C) A hospital or freestanding birthing center shall not conduct a critical congenital heart defects screening if the newborn's parent objects on the grounds that the screening conflicts with the parent's religious tenets and practices.

(D)(1) The director of health shall adopt rules in accordance with Chapter 119. of the Revised Code establishing standards and procedures for the screening required by this section, including all of the following:

(a) Designating the person or persons responsible for causing the screening to be performed;

(b) Specifying screening equipment and methods;

(c) Identifying when the screening should be performed;

(d) Providing notice of the required screening to the newborn's parent, guardian, or custodian;

(e) Communicating screening results to the newborn's parent, guardian, or custodian and attending physician;

(f) Reporting screening results to the department of health;

(g) Referring newborns that receive abnormal screening results to providers of follow-up services.

(2) In adopting rules under division (D)(1)(b) of this section, the director shall specify screening equipment and methods that include the use of pulse oximetry or other screening equipment and methods that detect critical congenital heart defects at least as accurately as pulse oximetry. The screening equipment and methods specified shall be consistent with recommendations issued by nationally recognized organizations that advocate on behalf of medical professionals or individuals with cardiovascular conditions.

Dining Room Rehab Project

After completing my first project (dresser for my bedroom), I was ready to tackle another project for my dining room.  I had really like the way my dresser turned out and wanted a similar look for a dresser turned buffet for my dining room, which I was able to find on Craig's List.  This one was just $20!  Outdated, but very useable. 

And this other piece, a china cabinet, kind of fell into my lap (literally delivered to my door by my friend who bought a different piece of furniture from the same lady), and was a $25 bargain. 

After searching online, I decide this was how I wanted it to look.... as you can tell, I have an obsession with white furntiure.

So I knew I kind of had my work cut out for me.... sanding, de-stinking, priming and painting.  The buffet really smelled like old lady/ciagarette smoke, hence the $20 price tag maybe??  I researched how to remove the smell, and I ended up trying baking soda, a vinegar and water combination spray, and febreeze.  Which all helped...mostly.  Once it was painted the smell was totally gone inside and out.  Both pieces took a lot of paint - pretty much 3 coats plus the primer. 

Baking soda treatment

lots of prep work for these pieces 

And here are the before and afters...

BEFORE:

AFTER:

BEFORE:

 AFTER:

I haven't added the last 2 knobs on doors on the china cabinet as I need to find longer screws, but I'm happy with the way it turned out!  I think it's pretty close to my inspriation picture.  And the buffet provides LOTS of storage for all kinds of things that don't fit in my kitchen.

 

My supply list:

Kilz primer

Behr creamy white

assortment of brushes, sandpaper, rollers

water based polyeurethane

wood filler to touch up a few bad spots

new hardware

pricing:

$20 dresser

$25 china cabinet

$35-45 in paint and supplies, depending on what you already have

$47.47 for new hardware

so about $135ish for the whole project

I think they are a nice contrast to the dark dining room table we have.  Another project done.  Next one will be COLORFUL! 



Rehab Therapy

At the end of last summer my mom pushed a piece of furniture on me that didn't sell at her garage sale.  It was a piece I'm pretty sure she bought in the late 70s or early 80s as it was a chiffarobe for our nurseries when we were babies.  It has sat in my house for the past several months as I've been unsure what to do with it.  I have had some success with painting furniture, but definitely needed some direction and pointers.  Well, being the Pinterest junkie that I am, I finally decided it was time to stop pinning and start rehabing this thing.  And we really needed a dresser for our room so I decided it was time to buy a dresser and redo them together.  We made our first ever Craig's List purchase and I bought the dresser with mirror for $65.  The dresser was actually in really good shape - it just wasn't my style.  I thought that was a bargain.  Hopefully, the end result makes it all worth it! 

This is the piece that my mom gave me -the chiffarobe

This is the dresser and mirror we bought on Craig's List.

As you can see, two pretty outdated pieces, but in good shape.


And this was my original inspiration picture.  I just love white furniture and I really like the dark stained top with white drawers.

I love me some dark oil-rubbed bronze hardware, and I ordered it online.  Found what I wanted on Amazon (the brand is Cosmas), but found it cheaper on eBay ($29.41 for all the hardware for the two pieces of furniture including shipping, which includes 8 drawer pulls, and 6 knobs- not bad!).

I have painted furniture before, but turned to the Internet to find the best way to get the look I wanted.  I read a lot about chalk paint, which goes on without requiring any prep work (no sanding!), but I decided I wasn't sure about it. It is expensive and I figured I could get my desired look without it.  I would like to try it, or a home recipe of chalk paint with another project though.

The one tricky thing is that my Craig's List dresser had some kind of finish on the top of it. Some kind of laminate or veneer.  I was not sure how to remove it, how it would sand, and how the stain would take to it.

So I started by removing all the old, outdated hardware.

And then sanding everything.  Thankfully, we had the power hand sander that my brother Chris got Oliver last year.  Came in perfectly and saved some time

After I had washed it down, sanded it, dusted it all off, I was ready to prime.  Here's when I headed to the store to get what I needed:

Kilz primer (water based)
latex Behr paint in Creamy White
mini rollers & new brush
stain brush 
Polyeurethane (water based) - I used the brand Verathane
Stain (minwax ebony)

I primed everything with one coat.  I was then ready to try stain the top.  FAIL.  I didn't sand enough on the chiffarobe and my Craig's List dresser top posed a problem and wouldn't take stain.  Decided I was not going back to store to find a chemical remover for whatever it had on the top of it, and I went to my backup plan of all white.  So I sanded off all the stain and primed again.  I was ok with white tops on these.

I did 2 coats of paint and it looked so good.  I had considered distressing it with some sanding on the edges, but I couldn't bring myself to do it.  It just looked so crisp and clean, and I liked this look too much.  Maybe for the next project!

After two coats of paint, I was read to apply the polyeurethane.  I was planning to do 2-3 coats of that.  Let me just say that the polyeurethane application seemed to go smoothly, but the next day it looked bad in parts.  Next time I will remember to apply it very, very thinly and watch for drips.  It is best to use a brush for staining (kind of bristly and less soft) and not a roller.  That was my mistake.  Too heavy on the poly.  After a big set back, everything was fixed up.  Let's just say I'm now an expert in stripping (not THAT kind of stripping) as well.  This whole project has been a definite reminder that if it's not done perfectly, I can't let it be and have to fix it all up.

I eventually applied 3 light coats of polyeurethane and that definitely gave it a more protective finish.  I attached all the hardware and voila!  I put it in my dining room for the moment, but it will make its way up to our bedroom soon.  Really happy with how it turned out!  Here are the after shots...

 

Here is the before and after

And the chiffarobe before and after...

I love the way it turned out too.  Ideally, I would still like to put another shelf on the right side to maximize what I can put in there, but I think it looks great.  Welcome to 2013.



This project broken down:
dresser & mirror (not shown): $65
chiffarobe:  free!
hardware for both:  $29
supplies: about $35-40 depending on what you already have (paint, primer, rollers, brush, sandpaper, rags, polyeurethane)

It turned out so well that I have already bought my next Craig's List purchase and am ready to tackle a piece for my dining room (a long dresser turned into buffet for only $20)!  It is therapeutic.  Can't wait...although Oliver seems less thrilled that I'm taking up all the space in the garage.

Overdue

The days have gotten away from me, and things that I keep meaning to write about I have put aside.  We've had such a busy few months.  My last post was about driving down to Columbus and testifying at the Ohio State Senate on a pulse oximetry bill.  Since then, I have gone to Columbus again in April and testified at the House of Reps.  Now we're waiting for it to be passed and it looks promising.  I took Sofia with me this time and it was a great experience for both of us I think.  I can't help but be proud of how far we've come.

In May I turned 34 and Adelaide turned 2 1/2.  It is amazing how quickly she is growing up and I know before long she won't resemble a baby at all.  She is so smart and funny is a very loving.  She is still a mommy's girl and loves to be by my side all weekend long.  The weeks have been jam packed with work.  I've been working overtime since February, which I'm not really complaining about, but it definitely limits my time during the week.  It is probably good timing because it looks like Oliver will be laid off at the end of June.  The grant funded program he was working on at the Health Department is no longer going to be housed there and the program's future is up in the air.  He will find something new in time I'm sure, but I know he's probably secretly excited that he gets to spend the summer with the girls and enjoy days with them.  Sofia will be starting another year of preschool in the fall and Adelaide will go join her at preschool next January.

On Sunday, we completed our first family 5k together.  My first race ever actually.  It was a benefit for the Gathering Place, a local cancer support center in Beachwood.  It was a beautiful day and perfect running weather.  I have lost now just over 30 pounds since January and being active and running has been a big part of that, so it was great to get out and do my first run.  And I was pretty pleased with my time of 28:47 because I was hoping for under 32 minutes.  Oliver pushed the girls in the double jogger and had an amazing time of 22:59.

Sofia is doing great health-wise.  She had a cardiology appointment at the beginning of April.  It was the first time I saw in her post appointment notes that she was "acyanotic" (NOT blue).  Her pulse ox was about 92 or 93 at her appointment.  Her echo looked great.  We had briefly discussed the possibility of coming off coumadin and restarting aspirin, but is doesn't seem like that is going to happen.  The position of her stent isn't going to allow her to be off blood thinners.  She has done pretty well on coumadin.  She definitely bruises more easily and it is hard to keep an active 4 1/2 year old from getting banged and bruised up, especially during the summer.  And her levels haven't been the easiest to control.  However, she is good about taking her medicine and swallows the pills with no problem.  She recently had a discussion about coumadin with my dad, who was also taking it post hip surgery.  Even Adelaide knows what coumadin and furosemide are!  Sofia goes back to her cardiologist in August, which is a four month break. 

We also had an evaluation with Dr. Friedman, the pediatric neurologist I mentioned in a previous post.  He was very pleased with how Sofia is doing developmentally and will continue to monitor her once per year just to keep an eye on her.

We just had some family pictures taken over the weekend and I love them.  Sofia looks so pink.  The last time we had them done was right before her surgery last year and the difference is notable. 

 

There are a few others that I will post soon because I just love them all.  My talented friend Lorelei took them and she did such a great job.  The first family picture is my favorite and is exactly what I was looking for.

We also welcomed a new niece in May, beautiful Emma Marie.  She was born at the end of May and is a wonderful new addition to the family. 






We are hoping to get up to Toronto again soon to see Oliver's parents.  We also look forward to hopefully getting a night or two away solo (would be our first time ever I think) and also celebrate our 10 year anniversary this summer.