The Real Purpose of Ultrasounds

As technology has gotten better and parents have become ever the more reliant on planning everything about a new baby's arrival; the role of ultrasounds in pregnancy has evolved.  There are now photo studios cropping up here and there for walk ins or casual appointments of 3D's so you can see which parent the little turkey favors, a first home movie of sorts to keep in the baby book for the future.  But these are all missing the point, it doesn't matter whether or not you're trying to pick out pink or blue crib bedding, or which outfits to get on the registry.

The real reason behind those grainy ultrasounds when they were first introduced was to make sure that the baby cooking in Mommy's tummy was HEALTHY.  Is the growth on track?  Does the umbilical cord look like it's developed correctly and giving all the nutrients it needs to the baby?  And how about those organs?  Is everything where it should be, look the way it's supposed to and doing it's job?  These ultrasounds are a window into a whole other world, into an entirely new life and we as society are losing perspective.

I'm young and naive (okay nix the young part) but I can say all these things about under-appreciating the value of the science behind that critical 20 week ultrasound because I am guilty of just that.  I didn't really consider what could be found on the screen or what wouldn't be there at all i.e. an entire left ventricle.  I was all about boy or girl, pink or blue, this crib bedding or that crib bedding - which stroller, yadda yadda yadda.  I missed the whole concept of the good that would come by this early screening.  That once Olivia's HLHS was diagnosed, we were given a precious gift to get a plan together, pick doctors, hospitals, everything that went into her care and nothing about what she would wear when she got home.

About half of all CHD's are still missed today during routine ultrasounds.  If you know someone that's pregnant or may become pregnant, talk with them about the importance of asking the right questions during the course of the ultrasound.  1 in 100 babies are diagnosed with a CHD, spread awareness....spread HOPE

Pre-Fontan Cath Set

Olivia and I were just minding our own business cooking dinner yesterday when the phone rang and I saw that it was the Heart Institute for Children.  A very nice cath nurse was calling to inform me that she understood from our last cardiology appointment that we were supposed to set up the Pre-Fontan cath.  I laughed a bit and  asked if she had it backwards "Wasn't I supposed to call in to get the appointment going?" She explained with spring breaks and doctors schedules, etc they wanted to make sure they could schedule it in such a way that Olivia was the first case of the day - so the big day is set for April 3rd.

For all you heart parents out there, here's the nitty gritty for prep:

• Pre-cath bloodwork will need to be done because we do suspect some ballooning of the LPA will need to be done; and they always keep blood on hand in case of an emergency
• Vaccines (her 2 year round) can be given up to two weeks before the procedure and the Synagis could be given up until the day before
• Meds can be given as usual except for the day of cath, even the aspirin which I was a little surprised about
• No food or milk after midnight, but clear fluids and pedialyte can be given until 5 am; even though our "check-in" is at 6:30
• I explained how Liv has always appeared nauseous after her procedures, throwing up after the Pre-Glenn cath and again after the Glenn and the nurse said that's actually something they're really trying to work on, so fingers crossed
• If all goes well and no ballooning, coiling or stents are needed, Olivia will be discharged the same day
• If any intervention is required then she's got to stay for the night just for observation

As we know more, I'll let you know, but it sounds like the Fontan really is in our near future.

It's all about the Costo Parking Lot

This past weekend Olivia and I had a Mommy/Daughter weekend while Brian went off to hang out with his brothers and friends.

Saturday morning I decided little girl was a bit antsy and needed to get out of the house to get some fresh air, sunlight and visual stimulation from her favorite pastime - shopping of course!  I got her dressed, threw on some sweats and we were on our way.  But Mommy needed some coffee first, Starbucks was just on our way to Costco and bonus was this one has a drive thru so I didn't even have to unload Midge. Latte secured, we drove over to the Costco and were making our way in when I had one of those moments that gets me every now and then.

We had just parked our very nice Livvymobile, were making our way in to the store, I looked down and saw name brand everything on me, name brands on Liv, Starbucks in my hand and loaded little branded wristlet just waiting to see some credit card action.  A few years ago I don't even know that I would have taken notice or had the thought of just how much I have; and I certainly wouldn't have taken note of the fact of how little it all really matters.

When I think of the benchmarks that I would have used pre-Olivia to sort of note my future children's success and content; I'm sure it would have been a combo of good health and wealth.  Did they aspire for higher education, did they have stable well-paying jobs, did they make good sound financial decisions to plan and protect for their future families?  Alas, life dealt a different hand and things have changed and as I've observed, there's been an evolution.  I want what is best for Olivia for her health, for her future but mostly happiness; because what sort of life are you leading if you can't manage a smile at least daily in the worst of times?

In my mind what I should have been focusing on all along thinking about my future children was their happiness, what sort of people would they be?  Hopefully kind, loving, responsible, and respectable contributing members of society.  Would they give more than they would expect from others?  Had I done everything I could to make sure they were independent enough to take risks and strike out on their own?  You see where this is going, it was a moment for this Mommy for sure...and all in a matter of our walk from the car to the store.

As a sidenote - our trip to Costco was one of the worst ever!  Too crowded, impatient/hungry Liv and the free sample Saturday options just weren't cutting it.

1 in 100

All right, I'm being a bit lame by re-posting last Feb's post but it's important

Heart Awareness Month

Facts of CHD's

• Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD - HLHS is one of the rarest and complicated heart defects out there
• Congenital heart defects are the #1 cause of birth defect related deaths
• Congenital heart defects are the leading cause of all infant deaths in the United States...sadly many defects are still going undetected during pregnancy and these unassuming parents take home what they think is a healthy baby only to have a crisis in the first few days of life that many times leads to death
• Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood
• Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood

Lifelong Disease

• Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities- this can be from poor oxygen throughout their bodys from their compromised circulation or a result of numerous surgeries, bypass and/or brain bleeds
• There are an estimated 2,000,000 CHD survivors in the United States
• For the first time, more than 50% of the CHD survivors are adults - LOVE THIS!
• 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood

Economic Factors

• 91,000 life years are lost each year in this country due to congenital heart defects
• The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year

General CHD FACTS

• More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime - Olivia is 10 months old and has had two open heart surgeries and one heart catherization, she needs at least one more surgery and will require catherizations throughout her life for diagnostic purposes
• There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them
• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD

CHF

• The Children’s Heart Foundation is the only organization that was created to exclusively fund congenital heart defect research
• The Children’s Heart Foundation has directed $3.9 million to 41 basic science, translational and clinical CHD research projects at leading research centers across the US and Canada
• CHF has published and distributed 35,000 English and 3,000 Spanish copies of It’s My Heart, a patient and parent resource book
• CHF has established eight Chapters and has volunteers in many US states

Research Allocations & Impact

• Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease
• Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research
• Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research
• The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem
• In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research