Wednesday, February 25, 2015

Education is an economic program, not a social program

Education is the foundation of solid economic policy. It is not a social program, though it is treated as one in the United States. Countries that emphasize creating a skilled workforce have a more agile, better performing economy. Kansas is on track to gut our entire education program. These policies threaten our state for generations to come.

Yesterday's vote to defund Parents as Teachers is yet another example of Kansas's short sighted devaulation of education.  The Parents as Teachers program provides invaluable community outreach helping to ensure the academic success of at risk populations. The program is a vital part of the safety net that ensures a strong foundation for our future generations.  Infant and Toddler Services and the Early Childhood Special Education programs help mitigate long term costs of providing a Free and Appropriate Public Education.  
An overall value on education with an innovative and appropriately funded public education program will ensure a robust, versatile and flexible workforce that will do more to lure businesses to our state than any tax incentive we can offer.  

Our Governer and respected Representatives need to reconsider their education policies in light of all the studies that show funding education pays an overall net gain in our economic future. Kansas is on a dangerous path of income inequality and injustice.

NICU Graduate - Baby Girl's Gone Wireless!

Baby Girl had her second NICU follow up today and she looks great!  Everything from head shape to weight gain is fantastic.  She seems like a typical 7 week baby, which is amazing considering where we started.  She's beautiful and so much fun to cuddle.

Mama is a bit nervous to be going wireless, we'll be using a Snuza monitor for the forseeable future.  We're working on adding more tummy time now that we are wire free.  Baby Girl gets OT through Infant and Toddler Services - a wonderful and very awesome organization (they are a 501(c)3, I think you can donate to them if you'd like).  We also receive support and help with early childhood development from Parents as Teachers.  Or at least, we do for now. Apparently, the committe that manages Parents As Teachers budget has decided to defund it, ending the program.  This would be a huge loss for families across Kansas.

We're so grateful for everything the St. Luke's NICU has done for us.  The doctors, nurses and support staff are top notch.  An amazing group of people who work tirelessly to care for a very vulnerable group.  We're so thankful we were in the right place at the right time.  We know our story could have gone very differently.

Baby Girl was 22 weeks old on the 22nd of this month.  She's a NICU Graduate!

Tuesday, February 10, 2015

CHD Awareness Day #4, Realization

It took me a long time to realize that C4 was never going to be cured.  No matter how skilled the surgeon, there was never going to be a point wher ethe doctor would say "Ok, your heart is good now, you no longer need a cardiologist".  C4's heart will always be broken.  With skilled repairs and careful manipulation of what the surgeon had to work with, we've achieved "good enough for now".

When you tell people you're going to have a baby with a congenital heart defect, almost universally, they tell a story about their friend who had a heart baby who had open heart surgery as an infant and "they are totally fine now".  For some defects, that may be true, but regardless, that heart now has scar tissue and modifications that will forever change how it operates.  That heart can never be normal, it must be managed.

People think that congenital heart disease is something that can be fixed and then you move on, but it isn't.  It is a life long affliction with lasting conseuences.

Some days, I barely think about Charlie's heart.  Some days, I don't imagine when the next surgery will come.  Most nights, I check on him, to make sure he's still breathing.  Most nights, I realize, this is a journey that will never end.

Monday, February 9, 2015

CHD Awareness Day 3, Siblings

The decision to have another baby after C4 was really hard.  We were very scared of another CHD.  The odds increased to 2-3%.  We ran some genetics tests on C4 and determined that he didn't have any obvious syndromes that would effect the heart, this is part of what gave us the courage to try again.  We are so lucky to have Baby Girl in our lives, she's a different adventure, as all kids are.

Even though Baby Girl was born heart healthy, her prematurity led to the possibility of a couple of defects that occur when the fetal circulatory system doesn't correctly shift over after birth.  She could have had a PDA or a PFO which would have needed to be surgically corrected.

Sunday, February 8, 2015

CHD Awareness Day 2, medications and surgeries

Today is day #2 of CHD Awareness week.  Today's topic is medications and surgeries.

C4 has been on multiple medications since birth.  Prior to his first open heart surgery, we danced the delicate edge of heart failure.  We gave Lasix (which tastes terrible) to reduce swelling in his belly and fluid in his lungs, this threw off his electrolytes so we gave him sodium and potassium (which taste worse than the lasix) to try and bring his electrolytes back into alignment.

We gave medications to speed his digestion and medications to decrease the acid in his stomach because when your heart doesn't work right, your body prioritizes where your oxygenated blood goes and your guts are not the winner.

After Open Heart Surgery (OHS) #1, we started on an ace inhibitor (blood pressure med) to decrease pressure on the repaired valves in his heart.  No one is sure it will help prolong the life of the valve, but it might, so we try.  For weeks to months after surgery, you stay on Lasix as your body gets used to a newly efficient circulatory system and starts appropriately sending fluid out of the body.

Between surgeries, we only have to give a few syringes 2-3 times a day, to stimulate appetite, because he never learned what "hungry" means, to continue to protect his valves from the wear and tear of life.  Steroids for his lungs which are struggling under the backflow from a leaky valve until finally, the tipping point comes and we must have surgery again.  The goal for open heart surgery is to have the surgery just barely before the person gets sick.  On the cusp of something awful happening, so you eek out as much good time before surgery as you can and the patient still has the reserves to withstand the trauma of the surgery.

The first surgery was hard on C4's sinus node, the second one damaged it somewhat significantly, which may lead to a third surgery. In the mean time, we enjoy each day, we eek out as much good time as we can get, waiting until we are on the cusp again.

19 days post op, OHS #1

Saturday, February 7, 2015

CHD Awareness Day 1, Diagnosis

(Originally posted on Facebook)

2/7/2015 is the first day of CHD Awareness week. I never thought I'd be on such a journey with my child, it is a journey I wish my son didn't have to walk. He's currently very stable and I hope he says that way for a very long time. We check his heart rate yearly. His surgeries damaged his sinus node, so it doesn't fire as it should, some day, he may need a pacemaker. Some day, he may need a valve replaced. We are part of the 1 in 100 children affected by Congenital Heart Defects.

C4 was born with a Complete AV Canal Defect with Overriding Aorta. Essentially, he didn't have the septum down the middle of his heart. His body compensated for the lack of a septum by creating one large valve that spanned the entire heart instead of the two valves that should be present. His aorta was further over than it should be, which edged him toward a second defect called Tetrolagy of Fallot. We were able to avoid that diagnosis by a matter of millimeters. Here's the blog post from the day we found out about C4's defect, it is also the impetus for this blog and my very first post. ‪#‎chdweek‬ ‪#‎1in100‬

Friday, February 6, 2015

Preemies are exhausting... Cardiac babies are super exhausting

Baby Girl hit 10 lbs!! 

Baby Girl has nothing on C4 when it comes to exhaustion.  Trying to get a cardiac kid up to 10 lbs for surgery is far more difficult in my experience than keeping this preemie gaining weight.  Baby Girl hit 10 lbs today at 19 weeks, 4 days.   C4 was 11 or 12 lbs when we had surgery at 15 weeks old. The thing is, C4 was 6lbs 4oz at birth and Baby Girl was 1 lb 10 oz.  She's gaining weight by leaps and bounds compared to him.  She LOVES eating, is almost entirely breastfed (we do 2 fortified bottles a day to boost some nutrients preemies need) and will eat practically anytime food is on offer.

 C4 is on an appetite stimulant to this day.  He's never had fat rolls like Baby Girl. We used to spend 30 minutes coaxing 2.5 oz down C4, Baby Girl takes 3 oz in under 10 minutes and then cries to go back to breast and top off.  So very different!

C4 has yet another sinus infection, poor kid is always sick... I still hate winter.

C4 has been doing very well in his preschool.  He's made leaps and bounds in imaginative play and social skills.  Yesterday when I was feeding Baby Girl, he brought down his baby and fed her in the seat next to me.  Academically, he continues to startle and confound us.  We caught him multiplying 2 digit numbers last night.  It took us a minute to figure out what he was doing, the first "number sentence" we realized he was creating was 18x22, he did the math in his head, school is going to be an interesting mix of problems for us.  We will be learning about our Kindergarten options next week.