Letter to my baby on her 5th birthday

12-18-13

Dear  Sofia,

I'm writing this letter and giving it to you on your 5th birthday.  How much you will understand now is uncertain to me, but that's ok.  It's as much for adult Sofia as it is for 5 year old Sofia.  I tear up every time I think about writing it (I think pregnancy hormones are only partially to blame), but I hope when you're old enough to read it and understand it, that it will make you smile.  You are such an amazing child and you're so loved.

Five years is a remarkable milestone.  Of course all babies are miracles, but you are extra miraculous given your beginnings and the things you faced in your first 5 years.  Most of them occurred in your first few months.  It was a turbulent time for us.  While other moms I knew who had just  their first babies too were worrying about their little one's first colds or first round of shots, which is a normal and reasonable worry, I was focused on how you'd recover from your first heart surgery and then how you'd handle your second heart surgery (which you sailed through, by the way).  That was a surreal place for us.  We were blindsided by your diagnosis and we had a very steep learning curve in the world of all things cardiology.  My maternity leave seemed so short, but after your first month in the hospital you came home and things went smoothly.  We got to just enjoy you.  We were lucky enough to have grandma to watch you when it was time to go back and I knew you'd be in good hands.   

I'm not really good with words of wisdom or saying profound things, but I do want to tell you that I think one of the things that I have learned a little bit more about since you were born, and what I hope you will also have one day is perspective.  When you were born, it was without a doubt the happiest day of my life and you and Adelaide (and this new little one coming soon) are the things in my life for which I am the most proud.  When we found out that your heart was sick and that you needed surgery, it was a scary time and I couldn't imagine our days being "normal" ever again.  But, as you did better, we did better.  You grew, and we grew.  I came to meet more and more moms and families and children with heart conditions and I started to appreciate that as rough as you think you have it, that there is probably someone out there with worse news to cope with.  It doesn't always make what you're dealing with easy, but it there is a bit of appreciation that things could be worse.  I learned that although we felt at one point in the beginning that our world had crashed down on top of us, some  are right in the thick of things, and some kids don't get a fair shot.  That you were given a great chance to live a happy and normal life is a gift.  I hope that when you have your lows, which we all do, you let yourself feel that way, but then take account of all the things that make you fortunate.  We faced lows when you were in the hospital over a month, when recovery was slow, filled with ups and downs, and you were feeling lousy.  Then we learned you had neighbor on your hospital floor, a little boy who was probably 3 or 4 who had already been there several months waiting for a new heart.  We could only imagine the difficult time he and his family were going through.  (After we discharged, we heard he got his new heart).  It was hard for us when you were admitted, discharged, and readmitted to the hospital more than once, but overall we knew we were very fortunate.

What I know, Sofia, is that nothing can stop you.  Without even realizing it, you've been through more than most do in their lifetimes.  You probably won't remember your surgeries, and now you handle your frequent blood draws, check ups and daily medicine in stride.  It has been so rewarding to see you grow up over the past 5 years.  Nothing can bring a smile faster to my own face than watching your excitement as you make friends, go to school, look forward to Christmas, learn new things, and experience all things that other kids your age are experiencing.   I wish there were things that 34 year old me could have told 29 year old me when you were born.  If I could have just seen you as you are today, so much worry could have been eased.  I remember in the early days after you were born, when you were teeny tiny, we trekked back and forth from the Cleveland Clinic everyday.  As I was leaving one day, I passed a mom and her daughter, who was about your age now.  They were holding hands.  I was stricken with fear that we might not get that chance to experience something simple like that.  You have pleased all your doctors with how bright you are and how well you are doing, and we know that day in and day out.  You are smart, curious, and rambuncous.  Yet, you are a sensitive little soul.  I am so lucky to by your mom.  I love you, baby, and hope you have the happiest 5th birthday and many, many, many more we share together.

Love,
Mom


You've come a long way Sofia!

                                      

 

 

Happy 5th Birthday!!

 

 

The good news post

We have lots of good news to report from the last week!  I had my midway pregnancy ultrasound on Wednesday before Thanksgiving and the baby looked great.  It was reassuring to hear that all the organs looked great and that everything appears to be healthy.  We have chosen again not to find out what we're going to have, and I don't have a strong feeling either way if it's a boy or girl.  The baby was breach, which is normal at this stage because they can still move around a lot, but it made it difficult to see its face.  We ended up with just a few fuzzy 3-D pictures.  Dr. Kushnir seemed very thorough with the ultrasound and was good at explaining each thing as he saw it.   He seemed sure that the baby's heart looked healthy as well, but experience tells us these things aren't always detected.  We followed up with a really nice Thanksgiving dinner at my parents house on Thursday with all the family.  Em, Kate, and I braved the stores on Thanksgiving night, actually just Target.  I did get some Christmas shopping done and this year it was worth the deals.  It was really nice to just spend a few days at home, not working, and enjoying spending time with my sisters, Oliver, and the girls.  All six cousins went to see frozen over the holiday weekend, which they all enjoyed immensely, even Adelaide who sat still to the whole movie.

The week began on Monday this week with my fetal echocardiogram with the pediatric cardiologist.  These types of appointments don't come without some bit of anxiety.  Although Sofia's heart condition is not considered genetic, we do carry a slightly higher risk of having another baby with a heart defect. The fetal echo can provide much better pictures of the heart than a standard ultrasound.  It is amazing what can be seen this early when the baby is the size of a spaghetti squash!  We liked Dr. Erenberg, and thought she was very thorough and answered all of our questions.  And the best news of all is that the baby's heart looked great!  She was able to see everything that she needed to, after a lot of waiting for the baby to get in good position, and we don't need to follow up with her again.  When I had my fetal echo done with Adelaide, she was uncooperative, and I had to go back in for a follow-up to get additional images.  21 weeks is a long time to wait into the pregnancy to make sure that everything looks healthy, but it was definitely worth the wait.

Sofia also had her cardiology appointment this week with Dr. Edwards.  She hasn't been since August so she was on a four month appointment schedule, which wasn't bad.  The only medication she is on now is Coumadin, she came off Lasix (diuretic) about a month ago.  Her pulse ox is 94, which is a great number for her.  She has gained 2 pounds since August, which is probably why we've had a hard time regulating her INR.... she's growing, and Coumadin is a touchy medication.  She also had an echo and EKG performed today, and Dr. Edwards was pleased with everything.  We were given a pass to come back in six months, which is great.  The next time we will go back we will have a six week old baby!  We are so thankful for Sofia's continued good health.

Our house is going back on the market this week, as our buyer's financing fell through.  I am focusing on the positive, and I'm glad that we will be at our house for the holidays.  Things have a way of working themselves out and I'm sure we will be in a new place in no time.  Right now I'm just on a high from my and Sofia's appointments and am happy with all the good news.  With the holidays and Sofia's 5th birthday coming up it is easy to remember the things we are grateful for and not focus on the things that aren't the way we want them to be.

Fall highlights

Long overdue post.  No other excuse except life getting in the way of me having a few minutes to document it.  It's been over 4 months since my last post, so here are the highlights.  And there are some big ones!

Sofia is doing really well.  In September she started her 2nd year of preschool.  She seems to really like it and we're pleased with how she's doing too.  She also had a good cardiology check up in August.  Good echo, good exam.  She is continuing to do very well.  It just amazes me how completely she has rebounded since last summer, which was a rollercoaster with her post-operative course after her May 2012 surgery.  We are very thankful that she is happy and healthy.  She won't go back to cardiology until December.  She is doing well on Coumadin, but it has required pretty frequent blood draws due to unsteady INR results.  I think part of it is that she's growing.  Just in the past few weeks she seems to be eating so much more and growing.  Taller and bigger.  She will be 5 in December!

Adelaide is going great too.  It also seems like she's growing very quickly too.  She turned 3 last week and she is an inquisitive, funny, smart girl.  She learned to ride her bike without training wheels this summer at age 2 1/2, probably just to try to keep up with her big sister.  She will start preschool in the "young 3s" class in January and she is very excited about that.

Oliver and I are doing well too.  In exciting news, I'm pregnant with our third and due in April!  We are looking forward to this new baby coming in the Spring.  I've had a good pregnancy so far.  Luckily, never getting morning sickness, I just fought exhaustion off in that first trimester.  That has passed for the most part.  Emily is also pregnant, so it will be fun and interesting to add 2 more cousins into this mix of crazy girls!  Neither of us is finding out what we're having, so that will be a fun surprise.  It will also be nice to share maternity leave.  I'm 18 weeks, so I'll be having my detailed ultrasound the week of Thanksgiving and my fetal echo the following week.  I've haven't focused too much on them, but like any parent with a child with heath issues, there is no being naive when it comes to what could happen.  I did have the Panorama screening in my first trimester.  There are new, non-invasive blood tests that test fetal DNA for chromosomal abnormalities.  I had good results with that.  It wouldn't detect any heart related problems, but I will have the fetal echo for to check out the baby's heart in detail.  The girls are very interested in the baby and seem to be excited about having another sibling, although I'm not sure they know what that means yet.  I'm not sure I know what it means yet to have 3!

With the additional of another child and Sofia starting kindergarten next year and wanting to be in a better school district, we decided to list our house for sale at the beginning of September.  We were lucky that it sold in a month and we're now in the process of closing.  We have NOT found a new house yet, so we're planning to move into a rental until we are able to find a house that we bot love.  I've given us a deadline of the end of March since the baby is due in mid-April.  The buying and selling has kind of been a stressful process and one that I don't want to do anytime soon again, especially pregnant.  Hoping I look back on this in a few months and it's a distant memory!  We are really hoping to be all packed up and settled in a couple weeks in a new place in time for Thanksgiving.  Then it will be Sofia's birthday and Christmas.  So much happening :)  But all good things and we're happy.

And now for a few pictures.  they're in no particular order and it's not easily letting me rearrange them

With my brother Chris's help, we made 2 of these beds for the girls!  I just love the way they turned out.  That's for another post, I think 

Went to a fundraiser this summer.  Sofia's surgeon, Dr. Stewart and me

Adelaide's birthday (she asked for a bathtub full of ice cream for her birthday, which is an idea from a book we read.  Uncle Rob delivered and she love it!)

3 years old!

Sofia and cousin Camryn

I also redid a rocking chair this summer.  This was my mom's from when she had us babies

Our third heart walk

 Sofia's first day of preschool this year

Halloween

Uncle Rob taking girls for tractor rides

And Oliver and I celebrated our 10 year anniversary in August!

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.