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. 

Whirlwind Week

Through our Mended Little Hearts group's contact with the American Heart Association, I had the opportunity to share Sofia's story and how it related to current pulse ox legislation for local Cleveland news last week.  I was interviewed on Thursday by Channel 3's health correspondent and the story aired that night.  In the Ohio State Senate, Bill 4 is up for debate, which would mandate pulse oximetry testing in newborns.  Because Sofia's defect was not discovered prenatally, we were lucky hers was discovered in the hospital through pulse ox screening.  I have posted the video link here of the story:

http://www.wkyc.com/news/story.aspx?storyid=287708

In even more amazing news, on Friday the American Heart Association asked me if I would provide testimony for the Ohio state Senate Health and Services Committee on the bill.  I knew I had to do this and it would be an amazing opportunity, so I drove down to Columbus yesterday and gave my speech today at the state house.  So glad my sisters were there!  Dr. Rosen, a pediatric cardiologist, at Nationwide Children's Hospital also provided proponent testimony.  He did a great job fielding questions from the Senators on why pulse ox testing on every newborn should be mandated and not optional.  We didn't ahead know that there was another parent who also was offering testimony today.  She was called first to speak and as soon as she started speaking and getting emotional I knew that her baby did not have the same positive outcome that Sofia had.  The parallels were a little uncanny.   Her baby's name was Sophia and she was treated at the Cleveland Clinic also.  Her baby lived for 15 days and her story was heartbreaking.  What a courageous person it takes to get up in front of a group and talk about something still so fresh and painful.  I knew it was over for me, and the calm and thoughtful speech I had planned went out the window.  It was hard for me not to get emotional, and part of that was definitely out of gratitude that Sofia is thriving.  

Thank you American Heart Association!  They have been instrumental in making this happen and we so helpful and fun to work with.

                                         I have the best sisters in the world! 

My speech:

Senate Medicaid, Health and Human Services Committee

Proponent Testimony for Senate Bill 4

Chairwoman Jones, Ranking Minority Member Cafaro, and Committee Members, 

Good morning.  My name is Anne Curwen and I am from Lake County.   Thank you for giving me the opportunity to speak before you today.   I don’t know a mother who doesn’t like talking about her children, but not many get to do so in front of the distinguished audience of the State Senate.   I found out just 4 days ago that I was going to be able tell you about my special daughter Sofia, but in many ways I’ve been preparing for this for 4 years, which is when Sofia and congenital heart disease entered our lives.  

I had a normal and healthy pregnancy with Sofia and when she was born a week before Christmas in 2008, we were beyond excited to have our first child.  We found out she was girl, something we had waited 9 months to discover. And she was perfect.   She was born at 8 in the evening on
December 18th at a community hospital in Willoughby, Ohio.  I didn't think life could get much better than this.  What I didn't know is that things were going to get much worse before they got better again.

After spending a few hours with Sofia after she was born, in the late evening a nurse had offered to let my husband and me get a little sleep, take Sofia to the nursery to do her standard hearing screen, and bring her back when she was hungry again.   When the nurse returned to our room a few hours later, she did not have Sofia with her, and she told us that they thought Sofia had a congenital heart defect and would require surgery.   We were in shock, and thought they could not mean our Sofia, who a few hours earlier was born seemingly healthy. The nurse said that they had noticed Sofia looked a little dusky in the lips and they put a pulse ox monitor on her, and with that they knew pretty quickly she was in distress.   What they didn’t know yet, was that Sofia was born without her tricuspid or her pulmonary valves (2 of the heart’s 4 valves) and now that she was out of the womb, she was not getting enough blood and oxygen to her lungs.  The nurses acted quickly and were able to reach the neonatologist on-call, who came in to start treatment on Sofia.  They began a medication called prostaglandin which acted to deliberately prevent her main blood vessel that was open in utero from closing off, as this became a lifeline for her, which stabilized her until she could be transported to the Cleveland Clinic.  Sofia needed heart surgery at just 4 days old.  
 

It did not take long for my husband and me to realize that a series of things that went remarkably right for Sofia saved her.  She was only 1 of 2 babies in the nursery that night, which led to an observant nurse to put the pulse ox monitor on her.  We struggle when we think about what could have happened had Sofia gone home before her heart defect was discovered.  Sofia could have gotten very ill, could have been rushed to the hospital from home because was had gone into distress,  it could have been too late to administer the prostaglandin because that blood vessel would have already closed off, and she could have faced surgery in a much more dramatic fashion.   We live about 35 miles from the 2 major Cleveland hospitals that treat congenital heart defects.  There might not have been enough time.  
 

This is why it is critical to catch babies with undetected heart defects in the hospital.  In talking with other families, I have learned that not having a prenatal diagnosis of a heart condition is not that uncommon .  I had routine prenatal care andultrasounds during my pregnancy with Sofia, and her heart defect, which is considered a complex defect,  was undetected.  The pulse ox screening was a safety net that literally saved her life.  

When I think back to when Sofia was being transported from Lake West Hospital to the Cleveland Clinic in snowy December, I remember what the neonatologist said to the transport team.   In a stern, and almost mother-like way, she told them “do not speed, do not take risks.  This baby is stable.”  How lucky we were Sofia was stable.   With that stability, came the opportunity for us to meet the cardiologists and the surgeon that would operate on our tiny baby, and go over a plan for Sofia’s surgery.   That probably would not have happened if Sofia’s defect had not been caught while she was still in the hospital.

Once we learned what Sofia’s specific heart condition was, we knew she would face 3 heart surgeries to give her optimal circulation. She has had her 3 surgeries and she is an active, energetic, and bright 4 year old. We really are the lucky ones and we don’t take that for granted because we know of too many who were not as fortunate.

I am speaking to you today on behalf of not only Sofia, but also babies who could be saved by standard pulse ox screening ,which are estimated to be approximately 250 per year.   I’m also not speaking on just my own behalf, but for the moms, like I was at one point, that are naïve about the the test that could save their babies.

 

Thank you

Neurocardiac Clinic

Along with opportunity to meet new families through Mended Little Hearts, we have also been introduced to some great healthcare providers.  We've had a few presentations in conjunction with our regular meetings, which have been very informative and practical.  We had a pediatrician speak to us in the fall, and last week we had a presentation from a pediatric neurologist, Dr. Neil Friedman (who has an interest in neurology and congential heart patients) from the Cleveland Clinic. 

As a parent of a child with heart disease, I know that developmental delays are not uncommon.  I've always attributed this to surgeries, being on bypass, long hospital stays, etc.  I have always thought we were lucky with Sofia because always been developmentally on track despite having three surgeries.  When she was an infant we had Help Me Grow follow Sofia, and when at age 2 they told us we didn't need them anymore, I insisted they keep following up with her until she was 3 (which is as long as the program follows these kids).  I have always been amazed with how bright Sofia is.  She is smart,  she understands 2 languages, and she is always amazing us. 

After the presentation by Dr. Friedman, the neurologist, I didn't expect to feel less confident about my own beliefs about Sofia's development.  The presentation was very interesting, as it detailed the study of pediatric heart patients and neurology.  Since surgery began on these babies (not all that long ago), the developmental delays that were noticed (psychomotor delays) were believed to occur  because of surgery and the amount of oxygen that was getting to the brain.  During the 1980s and 1990s there were studies that focused on different techniques, but it was learned that none of these correlated to a lower indicence of developmental delays.

In the last decade or so, a shift to studying of brains of babies in utero took place.  Dr. Friedman showed scans of a full term baby with a heart defect, a full term heart healthy baby, and a premature baby.  The conclusion was that one could not tell the difference between the full-term heart baby and the premature baby (essentially they both had white matter injury).  It was kind of a blow to learn that the abnormal circulatory patterns for heart babies in utero affects babies before they are even born, so the only way to restore better flow would be to do surgery in utero.  Which, if you're like me and Sofia, did not know about her defect ahead of time, and I'm not sure anything could even have been done differently had it been diagnosed prenatally.  It boiled down to not really mattering when your child had a particular surgery (like and old Fontan or new one) because the developmental implications were set in utero, not in surgery.

So you can see why I felt somewhat uneasy after this presentation, especially because the develomental delays were more common in children with complex congenital heart conditions (like Sofia's).  The types of developmental delays that occur are behavior difficulties (ADHD), visual/spatial dysfunction, fine motor, and language difficulties.  She doesn't exhibit any of these delays, but that doesn't mean she will be without any of these problems in her life time.  ADHD is generally not diagnosed until kids are school aged (selective attention and inability to change focus, impulsivity, hyperactivity).  And ADHD medications often have cardiac implications, which can make these patients harder to treat.  Dr. Friedman also termed one condition as the "Fontan personality," which is observed autistic-like traits in patients who have had the Fontan surgery.  So, more unsettling.

I am glad I attended, and I ended up making an appointment for Sofia for an assessment with Dr. Friedman.  The neurocardiac clinic at the Clinic seems like a good place for that (they also can diagnose genetic conditions, provide PT and OT if needed, nutrition, etc.).  I figure that an extra set of expert eyes on Sofia can't hurt.   I also now know that you have to be proactive about these things and we will keep an eye out on her as she is in preschool now, but especially when she starts kindergarden.  However, I will not obsess about how pokey she is...how long it takes her to put her shoes on, get her coat on, and get ready to leave the house because she is 4 and this does not mean she has ADHD. :)

I'm thankful we have the MLH group and am learning things everyday.  The one thing I often take away from these types of presentations is that Sofia and kids like her are on the cutting edge of medicine.  There is so much unknown and they are products of refined surgeries.  There is much to be learned, but I am so grateful she is here and doing amazingly well.

Little Heroes

Congenital Heart Awareness Week comes with some mixed emotions.  My life changed forever when CHD entered it.  How can you not look at this and feel pride and hope? 

(a poster and write up about Sofia and other CHD kiddos were on display at the Clinic this week.     so awesome )

As a mom, I also can admit that I feel little sad and a little fearful at this time of year.  Sad for parents who have lost their babies, and sad knowing I am all too close to it and I could put myself in that place, yet at the same time couldn't even imagine the grief.  I think you cannot be a mom of a child with CHD and not feel at least a little bit of those emotions too.  We don't know what the future brings and for planners like me, that can be scary.  I have decided though that I am mostly happy during CHD week this year.  In my mind, Sofia is a CHD success story.  She is one of the lucky ones and we do not take that lightly.  Sofia may have been born with a broken heart, but she is not broken.  It hasn't broken us.  She is happy, energetic, and so full of life.  I once read that as a parent, you are only as happy as your sickest child.  So I won't hesitate to happy and enjoy my girls!

Four years ago, I was just learning what congenital heart defects were, having a new 6 week old baby who had just had surgery 3 days before Christmas and had only been home for a few weeks.  It was a surreal whirlwind, and that I am glad time has erased some of the details.  We have come a long way in four years, and now are active in meeting and supporting other families with children with heart defects.  At the time, I didn't think I would ever to get this point in my life.  There is much to be celebrated in that.

CHD awareness to me is about sharing the stories of remarkable children (and adults!) who are literally modern miracles, and hoping that with increased awareness, that legislation will be passed (especially in Ohio where it's lacking) for newborn pulse oximetry screening.  This would help diagnosis many children, including those with Sofia's type of defect, early. 


In honor of CHD week and Valentine's Day tomorrow, here is my special sweetheart on her very first Valentine's Day. 

                                                         (Sofia - February 14, 2009)

And here are just a few more because I can't resist cute pictures

first tea party at friend's birthday party

 

love, love this one

 

 

                                             sweet Adelaide wearing red for Sofia this week