Sunday, February 27, 2011

What IT is like...

If only I had a dime for every time I heard, "I don't know how you do it", "I could never do it", or "how do you cope with it?", I would be less than a millionaire, but I'd darn sure be richer than I am now.

"It", of course, being the mom of a child with chronic, life-threatening illnesses.  It was something I never wanted or expected to be.  It is something I hate being labeled as and hate even more to define my spectacular son.  It is the hardest and most rewarding thing I've ever had to do in my entire life. 

I apologize if I haven't updated this blog very much in the last few weeks.  Sometimes it gets to me more than I wish it would, and in those times, it's hard to find my voice.  It's hard to put a rosy sheen on things all the time when you'd rather just run and hide.  Very often, I find it difficult to write the goings on of our lives in a way that others can understand and relate to and frankly, that doesn't sound whiny.  I lean on my faith as much as humanly possible.  My Savior and my family get me through each and every day.  In the last few weeks, getting by is just about all that I felt I was doing and unfortunately, not a very good job of even that.

Sadly, society easily makes me feel like "getting by" isn't enough sometimes, and I think many other moms of children with medical or special needs feel exactly the same way.  We are expected to push through and be grateful for every day with our children.  And we ARE...in fact, we are probably apt to be more aware of those every day moments with our little ones and truly find gratitude in the moments that are as "normal" as we get.  The days that we are completely overwhelmed, beyond isolated, and thoroughly want to give up (more than we'd like to admit), we are unfortunately burdened by the guilt of experiencing those very feelings.  That's not fair.  But neither is it. 

There was recently a post on Thrive, the blog published by Children's Hospital of Boston, by the mom of two very amazing children battling terrible medical conditions.  Shannon writes truthfully and from the heart, and reading it, I felt like she was speaking to no one else but me.  "For families like ours, if you’re not overwhelmed every now and again, you’re not fully grasping the reality of the situation."  We try not to dwell on our reality, but ignoring it doesn't help us either.  (Of course, it didn't hurt that she talks about our beloved Dr. Kamin.  For the record, Keegan is just as fond of Dr. K.)

You can read Shannon's full article by clicking HERE.  I hope you do.  It might make you understand my life a bit more, and if you are in the same boat my family is, you just might need her words of wisdom today.

Once again, I apologize for my recent lack of updates.  Sometimes I just need to step away, and I hope you will grant me that every now and then.  I'm doing the best that I can, and my utmost priority is in caring for my children.  I might not do as good of a job as I wish I could, but I keep trying.  Because as Shannon wrote in her article, "life isn’t always fair, but it is worth fighting for."

Thursday, February 24, 2011

Survival

I know it's not very interesting, but I feel like that's what the last week has been about around here.  Several people have asked how Keegan is, how "we" are.

We're surviving.  Just doing the day to day and trying to be ok with it.  The same that we do every day.  I suppose though that in Keegan's world, boring is good. 

All of Keegan's issues are about the same.  His GI problems are still really, well, problematic.  One day is bad, the next very bad, the next...hey, not so bad...and so on, with no discernable rhyme or reason.  Bleh.  Although we do have a GI appointment coming up on Monday, and we are anticipating running a very unusual and random test.  It holds the possiblity of being absolutely no consequence and the answer, all in one.  SO, we shall see.  I will certainly update more about that next week. 

Keegan's heart is still good, and his labs are fairly stable.  We finally got a copy of the kidney testing results today, although we still haven't been able to actually speak to his nephrologist about them.  His weight (fluid retention) was down just a touch last week when he was day admitted for his infusions and breathing treatment.  I can honestly say that I never thought I would be happy to see his weight down!  Even if the number on the scale was down, you can see it in his face and feel it in his hands and feet.  I hate, hate, hate going to change his diaper, check his pump, and refill his tube feed bag in the middle of the night and feeling those little swollen feet.  Makes my heart sink every time.

It also seems that we have all finally kicked the viral nonsense going around this house.  Probably shouldn't say that because tomorrow morning, someone's nose will start running again!  Keegan has also started waking up in the middle of the night every single night the last two weeks, anywhere from 1 to 3 hours.  We're hoping it's just a phase that will pass soon.  Needless to say, we're all a little sleep-deprived at this point.

Other than that, we're just keeping our heads down and trying to move forward a little bit more every day.  We are still on "lock-down" at the house (hospital, therapy, and home only) until the flu season calms down a bit.  Audrey is doing well and growing, growing, growing.  She keeps us smiling every day, just like her big brother. 

Well, that's about all my little brain can put together tonight.  I will try to update with more intelligible information soon, but I don't promise anything at the time being!  Until then, please keep our friends the Akemans and the Aldridges in your prayers.  Both are struggling with so many things, and we are in prayer for them constantly everyday.  We'd love for you to join us for Angie, Avery, and John Christopher's healing.  Thanks so much, y'all.  More soon...and hopefully some pictures soon.

Wednesday, February 16, 2011

Little Miss Mischief

Proof in a series of photos that we have the making of a Little Miss Mischief around here...

Calmly eating my biscuit

What?  I'm making a mess, you say?

See my two lil' teeth?

I was just playing/destroying this trainset of Keegan's...

It was much more tempting than that pink computer thing I was playing with when you turned away.

I really liked the cozy set-up Keegan has on this chair in the morning...

Early bird (or Ladybug) gets first dibs on the chair!  (What a smirk!)

Article

Children's Medical Center sends out a monthly e-newsletter called "Children's Connect" with relevant stories concerning children's medical issues and patient stories.  This month's issue had two great stories about organ and tissue donation, including a lovely article about Keegan and Johnston.  Heather told the boys' story beautifully and in a way I hadn't really ever thought about until now. 

Click here to read the article: http://www.childrens.com/about-us/resources/news/archives/Two-baby-boys-one-tiny-heart.aspx

Monday, February 14, 2011

Happy Valentine's/Donor Day!

Today is Valentine's day.  That is true, and we hope that you are able to celebrate with your loved ones.  Our hearts belong to these two (no matter how uncooperative they are to getting their picture taken together these days), and we were so happy for another day at home together as a family.



More importantly though, today is National Donor Day, recognizing organ donors nationwide, but we honor the one who means the most to us...

Sweet Johnston, we love you and are so grateful for your life and love that lives on in Keegan. 

This one amazing little boy and his family have touched so many more lives than just ours.  Kevin and LaMonica's gift of Johnston's heart to Keegan at their time of utmost grief has radiated hope and life to countless other people, like the ripples of single stone tossed in the water.  Johnston's life may have been brief, but his impact, love, and legacy lives on every day in the hearts of his family and ours and literally inside Keegan.  What a special angel the world was blessed with in him.

Did you know that you have the power to save lives too?
  • Register to be an organ donor today in your state's official registry.  It takes about 90 seconds by going to http://donatelife.net/.  This will ensure your wishes are honored, but you still should take the time to inform your family and friends of your choice.  It's not a fun conversation to have, but neither is the one between a doctor and family telling them a loved one is desperate need of a new organ. 
  • Register to be a bone marrow donor by visiting http://www.marrow.org/.  It's just a simple cheek swab.  You can either have a kit mailed to you or find a local place to be tested.  In north Texas, you can drop into any Carter Blood Care facility.
  • Give blood whenever you can.  One donation can save up to 4 lives! 
We hope you'll join us in honoring Johnston and all the others out there who have given the ultimate gift. 

Happy Valentine's/Donor Day!

Sunday, February 13, 2011

Kidney results

I wasn't sure if I should post this or not, but I figured it was best to just go ahead with getting it out there.  Keegan's kidney testing from 2 weeks ago (yes, we're just finding out...don't get me started) came back showing that he has 55% function remaining. 

I was unsure of putting it out there because we have not spoken with nephrology to get a good idea of what this means for Keegan.  We got the results through the transplant team who told us they were not sure where that put us and would need to talk to nephrology.  Comforting, huh?  I'm pretty sure they were surprised at the results.  Keegan's cardiologist told me she was thinking and hoping it would be 70% or more. 

Around 35% kidney function, you begin the transplant listing process.  So, we don't have a lot of wiggle room here.  It is definitely disappointing that he is this low at only 3 years old.  Unfortunately, we did not run this specific test before Keegan's most recent bout of renal failure, so we're unsure as to how much it really affected him.  At any rate, I would think that this just means we will have to monitor him more closely.  I anticipate the team will want to repeat the glo-fil in 6 months or so to determine if he is stable or declining (and if so, at what rate). 

Obviously, this wasn't the news we were hoping to hear, but it also doesn't mean there is a lot we can or will do.  It's more of the same ol' thing we are too familiar and too tired of hearing...wait and watch.  Wait and watch.  Hopefully, we will talk to Keegan's nephrologist soon and get a better idea of where we stand after these results.  We will certainly share that information as soon as we do.  Thank you so much for your prayers and support.  I know I say it all the time, but we truly do. 

Audrey

Here's a little slideshow of the photos we had taken of Audrey a few weeks ago.  I think they turned out perfect...but the model was pretty perfect herself!  Thanks again, Erica.

http://video214.com/play/zKfIdbG3f268V3m1phYu4w/s/dark

Friday, February 11, 2011

Make a Difference

This is the last post I have in me for Congenital Heart Defects Awareness Week.  This week is hard on me for a multitude of reasons. I have to think back and remember the worst days of Keegan's life thus far.  I have to think of all the children (and adults) I know walking around this earth with broken hearts.  I think far too much about the multitude of CHD angels who left us too soon. 

But most of all, it hammers home even harder the fact that for Keegan and so many others, this battle...the war against their own hearts...is never over.  The threat is never gone.  Whether your heart is "fixed", and you're waiting on the next repair, the next surgery.  Or you have a "new" heart, substiuting one disease for another, and you wait, every day, to see if this is the day your body decides to reject that beautiful heart or that it's too weak to fight the next infection. 

Try as we might, we will never be able to make heart defects a thing of the past.  It's unfortunately not something we can cure. 

But we can make strides to make parents smarter....by teaching them to ask questions at their unborn baby's sonograms and demand they have one.

We can make hospitals more efficient in detection....by implementing mandatory pulse oximetry screening on all newborns before discharge.  If a baby is born at home or a birthing center, it should be done at the first well-child pediatrician visit. Write your legislator or local hospital. 

We can spread awareness...by telling our stories as many times as we can.  I know I was oblivious to the world of heart defects before it happened to me.  It doesn't have to be that way.  By spreading the word, others will know what to look for and to ask questions or seek medical advice if their baby struggles to eat or breathe, seems "blue" or tired. 

We can save lives...by registering to be organ and tissue donors.  18 people will die each day in America waiting on an organ.  Register yourself with your state's official donor registry by visiting http://donatelife.net/

And we can learn more...by funding research for congenital heart defects.  So much has changed in even the last 10 years...treatment options, surgical techniques, artificial valves, tissue grown from your own cells.  We now have adults living with CHDs, and a whole new world of research awaits to determine how best to help treat and support them.  There are countless ways to fund CHD research.  I don't have a "favorite" foundation to recommend to you, but a simple internet search will yield a multitude of results.  As it stands, I am more apt to support transplant resources myself and haven't done enough research to endorse a single source.  Every bit counts though; even and especially donations to pediatric research hospitals, such as Children's Medical Center in Dallas and Children's Hospital of Boston.  Obviously both are very dear to our hearts.  Each year, congenital heart defects kill more than children than all forms of pediatric cancer combined.  While there is certainly not enough federal funds dedicated to pediatric cancer, there is even less available for CHD research.  Even the American Heart Association only puts about one penny of every dollar donated to CHD research.  The need is great....give where you can if you feel called to do so.

While this week may have been a diversion of sorts from the general purpose of this journal in tracking Keegan's journey specifically, I appreciate your support and attention to this matter.  If we touched or educated even one more person, it is always, always worth it.  Thanks again.

Thursday, February 10, 2011

Pulse Oximetry

If you have ever been in an emergency room or hospital or even watched too much ER or Grey's Anatomy, you have probably seen a pulse oximeter.  For adults, a little clamp that looks like aligator jaws sits on one of your fingers emitting a red light.  For children and infants, it's usually a sticker wrapped around a thumb or toe.  Like this...

That little red light, which has absolutely no risks or side effects, has the capability of determining the percentage of oxygen in your blood.  It should be at 98-100% in healthy individuals.  Even as low as 94% is perfectly fine.  In a heart with normal structure, the heart pumps blood out to your body.  Your body uses the oxygen in the blood and shoots it back up to your heart, which sends that "blue" or oxygen-poor blood out to your lungs to pick up some fresh oxygen.  Then the oxygen-rich blood is pumped back out by your heart in a lovely, methodical, and beautiful fashion. 

But in most congenital heart defects, blood is not properly routed through the lungs and back out into the body.  That means that in some form or fashion, a CHD heart pumps the "blue" blood out to the body.  Blood without enough oxygen...Keegan's were in the 50% range at birth, and many with repaired hearts walk around with saturations in the 80s.  This happens from the moment a child with a CHD is born and starts breathing.  Recent research has shown that screening all newborns as early as 24 hours after birth can detect over 60% of CHDs and almost all critical congenital heart defects (i.e. those requiring surgical repair within 30 days of life). 

A mere 1/3 of CHDs are diagnosed prenatally (a number which could increase dramatically with proper training for sonographers and OBs).  That means that at least 2/3 are not diagnosed before birth, and over half of those are not diagnosed in routine infant wellness exams.  I know at least 7 children personally who were in that number, and unfortunately, not all of them survived long enough to be diagnosed.  As I mentioned earlier, prenatal diagnosis doesn't guarantee that a child with a heart defect will beat the odds, but for many, it could.

Considering these staggering statistics, it is shocking to me that there are still no national guidelines for pulse oximetry screening and only a handful of states or hospitals that have made it mandatory.  The encouraging thing is that the national Advisory Committee on Heritable Disorders in Newborns and Children has just issued a recommendation that all newborns be screened with pulse oximetry before being released from the hospital after birth.  Of course, that doesn't make it mandatory for states, so a lot of work remains to be done.

Here is a bit more information if you're interested:
http://www.congenitalheartdefects.com/legislation.html
http://1in100.org/category/advocacy/

Amazingly in my research, I discovered that some people are still resistent to mandatory pulse oximetry screening.  They claim that some false positive results will cause "expensive" follow-up echocardiograms for infants that have no heart defect.  They say that the few hundred dollars max are not worth the time and cost for the peace of mind that your child is perfectly healthy.  The Mama Bear in me would like to ball up the bills from Keegan's first month of life (not to mention the last few years; Keegan reached $1 million worth of medical bills in LESS than his first 4 weeks) and stuff them down these people's throats.  But I realize that would be...ahem...counter-productive.  The money saved from even a handful of those lucky children who were diagnosed from mandatory screening would vastly outweigh even 1,000 false positives. 

And if a single echo that turned out to be "unnecessary" saved even ONE CHILD from this...

Then it is most certainly worth it.

Wednesday, February 9, 2011

Share your story

By now, you know Keegan's.  If not, you can click the "about" tab above. 

So today, I want to offer all of you the opportunity to share your story.  Are you a heart patient/mom/dad/sibling/grandparent/anut/uncle/etc?  Are you the parent of a sweet CHD angel?  Even a friend who has watched and supported another through the difficult battle? 

Please share your story with us in the comment section below.  I can tell that many web friends out there are reading this blog anonymously, and this is your chance to speak out.  Maybe your story will touch or change the life of another. 

I know Keegan's has.  And I know my life has been changed for the better just by knowing I'm not alone. 

So, thank you in advance for speaking up.  If no one does, it's okay.  I know you're out there, and I'm praying for you anyway!

Tuesday, February 8, 2011

One sonogram...

Saved my son's life.

We were lucky...or blessed.  You decide.

A very good friend of my family just happens to be one of the leading perinatologists in North Texas.  He generously offered a 3-D sonogram to us as a gift.  So at 27 weeks, Gray and I met him, his wife, and his three children at one of his offices on a Sunday afternoon.  It was supposed to be a fun outing, a chance to see Keegan's beautiful little face before he came into this world.  And it ended with too many broken hearts - Keegan's, ours, those of our family and friends who already loved him as much as we did. 

Our friend had the unforunate task that day of telling us that Keegan's heart had not formed correctly.  Of course, we all assumed it could be fixed with surgery.  It should have been able to have been fixed with surgery.  That visit sent us into a tailspin of visits with fetal cardiologists, cardiothoracic surgeons, and neonatologists.  We scheduled an induction, pre-registered Keegan with the NICU, scheduled his first surgery, and reserved a bed in the cardiovascular ICU at Children's - all before he took one single breath. 

We had the luxury of educating ourselves, planning, and trying in vain to prepare ourselves mentally, physically, and emotionally for Keegan's birth.  Nothing can ever prepare you for having a child who risks dying simply by being born.  For going through labor knowing that the first time you hold your son might also be the last.  For standing watch over your baby's bed with his chest splayed open and connected to more tubes than you can or want to count. 

And yet, knowing in advance literally saved Keegan's life.  The NICU at the hospital where he was born knew he was coming but was wholly unprepared to stabilize him, not because they were incompetent but because he was that sick.  I doubt Gray will ever forget walking up behind the NICU attending on the phone with the Children's transport team, telling them that in the 20 minutes since Keegan was born, they were already "losing him."  Or the relief in the faces of the NICU team as they signed off responsibility of our son to the nurse who would try to keep him alive in the morning rush hour traffic down to Children's.  Despite all that, the fact that the team at Children's had "seen" his heart via a fetal echocardiogram and had at least some time to prepare saved time that Keegan did not have. 

Just one sonogram.  A non-invasive, no-risk look by a trained physician that is not standard in prenatal care in America.  A test that many insurance plans do not cover.  A test that some parents actually choose not to do.  Not to mention the thousands (like us) who have sonograms monitored by technicians or doctors who have not been sufficiently trained to recognize the single most common birth defect in the world. 

To us, it was more than just a sonogram or just a gift.  It was the gift of a fighting chance at life.  And there is no reason it can't be that way to the almost 40,000 babies like Keegan born every year in this country.  If you are pregnant or know someone that is, spread the word.  Congenital heart defects are scary.  Not knowing about them until a baby is born or later in childhood doesn't have to be.

FOOTNOTE:
Based on some conversations I've had recently and the comments below, I felt compelled to add a footnote to this post for clarification.  We had 2 sonograms at our OB's office and were told Keegan was "perfect" before his diagnosis.  Another heart mom told me today of having 2 sonograms at the hospital without a prenatal diagnosis.  The first thing this highlights is the need for greater education for sonographers and general OBs in diagnosing the most common birth defect in the world.  Yes, there are over 40 known defects and endless combinations thereof, but if you know what a heart should look like at 20 weeks, most structural defects should be detectable.  Secondly, we must remember that prenatal diagnosis doesn't always mean that a defect is "fixable"; many to this day remain fatal, whether the diagnosis is known before or after birth.  If nothing else, knowing in advance gives a family and medical team the opportunity to prepare themselves mentally, emotionally, and physically for the challenges that lie ahead.  And that can mean all the difference, whether your child makes it home or not.  I firmly believe that I can be a better mother to my son in the moment if I'm not also worried about educating myself on what is happening and how best to advocate for him in the midst of having to emotionally come to grips with his condition.

Monday, February 7, 2011

Survivor

Once again, this week has come around...Congenital Heart Defects Awareness week.  I have a love-hate relationship with it.  I cherish the chance to spread the word.  To educate.  To hopefully prepare or comfort one more family who will have to walk this road. 

But I hate that I have to have a "cause".  I hate that even one more child will fight this fight.  The truth is that almost 40,000 babies born this year in America will join this fight.  And 4,000 of them will have lost the battle before they reach their first birthdays. 

And the rest?  The survivors.  They will bear these as a testament to their battle.  And I hate that.


He's only 3 years old.

HE is a SURVIVOR.

There are too many like him.  So, I'll take this week to tell you once again about the world of congenital heart defects.  And I hope that because we will continue to spread the word, one day there will be more like him. 

Sunday, February 6, 2011

Family photos

I mentioned last week that Erica May took some family photos for us back in November.  It was the weekend before Thanksgiving, i.e. the weekend before Keegan went into renal failure.  I guess I never realized it until now that because of that, I didn't get to post any of them.  Erica did a very lovely job, given the conditions and subjects!  It had been in the 80s the entire week leading up to this session.  Then a storm blew through the day before and brought lots of rain and a cold front.  The beautiful location we had chosen turned completely muddy, and poor Audrey was not a fan of the cold.  Her little eyes and nose were running, and our usually smiley little girl was not having it at all.  Considering all that, I think these turned out really well!  Can't wait to see the rest of the photos from Audrey's make-up shoot from last week!  Thanks again, Erica!






Friday, February 4, 2011

More Snow!

After posting the video below, I got texts from our neighbors saying, "we HAVE to do that together tomorrow!"  In between the texts and this morning, another 6 inches of snow fell.  It was beautiful.  A winter wonderland.  However, it made sledding a little less exciting.  Looks like we are going to be snowed in for a little longer.  More snow and "wintry mix" is expected next week.  So much for mild Texas winter weather for the Super Bowl! 

I have to say we've been really enjoying this fun time in the snow the last two years of true winter weather.  Mamie is bound and determined to get snow suits for the kids for next year.  Murphy's Law usually prevails in our house, and that would mean there would not be another snowflake fall in North Texas for at least 20 years!  Just in case, you can see that our neighborhood is enjoying it as best we can!


Gage & Keegan

Ainsley & Lainey

Walker ventured out to the hospital at 5:45am this morning for a brand new set of sparkly, titanium tubes in his ears.  Needless to say, he wasn't quite as excited as the rest of us to play in the snow.

Daniella & Paulina

Gage in his super cool hat

Nic & Kaden

**Thanks for being our photogragher today, Abby!

Thursday, February 3, 2011

And on Day 3...

You finally just have to go out and have some fun on the ice!  Even if it takes you longer to get bundled up than you spend outside...








In case you live under a rock (which, let's face it, I do most of the time...Disney and Curious George aren't great at reporting the news), North Texas got some very un-Texas like weather this week.  We have at least 2 inches of ice left now, but most of the snow has blown away.  Not to worry!  More is supposed to come tonight!  Please do not report us to CPS for the following video.  Fun was had for about 8.25 minutes, and then, we ran inside to the fire.  Thank you to our neighbors, the Harrises, for use of their nicely iced over driveway and Miss Ellen for lending us this disc sled.  If the winters keep up like this as they have for the last two years, we just might have to invest in one of our own and some snow suits.  No children or fathers were harmed in the making of this video, so please enjoy!

 
 
(And in case you were wondering, I am almost recovered from the flu, aside from the continually runny nose and lovely case of bronchitis.  Keegan is back to just his normal health problems, and Audrey never got much besides a slight runny nose and a severe case of clinginess.  She has been at my parents' house for an entire week now due to the ice storm.  Hopefully, we will be a family of 4 again by tomorrow.  Thank you so much for all your prayers and support.  We are forever grateful!)