mamapig's Momaroo

CHD Awareness Week

Sun, 07 Feb 2010 17:31:43 GMT

Yes, it is that time of year again where we start to see the hearts and flowers out at the stores. For the past few years, Valentine's Day has always meant a little something different around the Pig household.

As many of you know, Emily was born with a congenital heart defect and the week leading into Valentine's Day is CHD Awareness week. What many people do not realize (myself included) is that nearly twice as many children in the United States will die this year as a result of a Congenital Heart Defect than all forms of childhood cancers combined. Oddly, research funding for pediatric cancers is five times higher.

Until Emily was born I had never even given this issue any thought. I am not alone. Many people do not even realize how common CHD is and how much it can turn your world on its side. I have seen a few different sets of figures, but it is believed that 1 out of every 100-150 children will be born with a Congenital Heart Defect. If that isn't enough to give you pause, the numbers show that only 1 in every 800-1000 children will be born with Down syndrome. Yes, CHD occurs in 1 out of every 150 if we take the high numbers and yet if I asked each of you that have given birth within the past ten years if a doctor had suggested to you an issue with your child's heart I would guess that answer would be a resounding "No". If I asked the same women how many had been asked if they wanted to be tested for genetic issues such as Down syndrome, I would guess the answer would be "Yes".

I was given the option to test for Down syndrome as well as other genetic issues. I declined. I was never given the choice to test for heart issues. We underwent two very long very complex ultrasound. The second one even had the tech unable to find the fourth chamber of Em's heart. Were we taken aside at that point and explained that there might be a problem with her heart and send to a specialist for further testing? No. Another tech was called in and amazingly Em's fourth chamber was immediately found. I say amazingly because as many of you know by now, she had only three. It would be two days after her birth that we began to understand her heart was not as it should be. We were lucky, doctors were running every kind of test imaginable due to her diagnosis of Down syndrome. Many children will not have their heart issue discovered for days, months, or even years.

I have discussed many times how it felt to have to hand over my barely twelve pound eight month old to a nurse knowing that in less than an hour they would be stopping her heart to repair the holes that would some day cause her death if not repaired. I am sure I have mentioned that the tissues they were working with were thinner than tissue paper and twice as fragile. Our story was one of the happy ones. Emily is here with us, her heart shows no signs of issues, and she is turning three next month.

For every story like hers, there are stories of those that aren't so lucky. Since I have been working with different organizations, I have watched far too many children with less happy endings. A three month old little girl that never saw the outside of the hospital before her heart simply gave up, for instance. After weeks of watching doctors shock their daughter's heart each time it stopped, the parents made the gut wrenching decision that it was time to allow her to go in peace. I have thankfully never had to witness the paddles placed upon my daughter's chest, but I have spoken to others that have watched their own children. It is a terribly painful experience and not one that any parent wants to put their child through.

I can recall many days signing on to Em's carepage to check in on one of our heart friends. One particular little girl spent more than 250 days in the hospital her first year of life. She underwent three heart surgeries during that time. After the final one, she was put into a drug induced coma due to the fact that each time someone touched her, she went into cardiac arrest. The little girl eventually recovered and is now almost two and living a great life with her parents and three older sisters. Yes, a happy ending without a doubt, but no child should have to endure what she did at such a young age.

It is noted that this year, approximately 4000 babies will not see their first birthday as a result of a Congenital Heart Defect.

A very real and yet sad fact is; The American Heart Association allots only 30 cents of every dollar raised for research. Of that 30 cents only 1 cent is set aside for pediatric research. I am sad to say that the figure is actually up. A few years ago it was less than one half of one cent. 1 penny doesn't even buy you a piece of gum and yet this is the amount earmarked for research on the number one leading cause of infant deaths.

Congenital Heart Defects affect many families. Emily's estimated medical cost for the first eight months of her life were very close to the million dollar mark. Much of that (thankfully) was covered by our health insurance. I can't help but think that with more funding for research, that money would have never had to be spent. In all honesty, I would have paid billions of dollars if it meant my precious girl would be healed and come home to us, but wouldn't it be wonderful if that wasn't necessary any longer?

February 7th through 14th 2010 is Congenital Heart Defect Awareness Week. It is my hope that in my own way I have made you guys more aware. Happy Heart Week!

Deja vu

Sat, 23 Jan 2010 17:41:34 GMT

Yesterday I had to take A to see a specialist about an ongoing stomach issue. His office happens to be in the very same hospital that E, Papa Pig, and myself served our tour of duty in the NICU almost three years ago. While I have been back to the hospital more than a few times with E for various office visits, this was the first time I have been there without her.

I was unprepared for the feelings that came over me upon entering that parking lot. If I were totally honest, even the drive was giving me a strong sense of deja vu. I began telling A the story of how I made this exact drive every morning for almost a month. As we talked I found myself remembering how very difficult those times were and how it seems like a lifetime ago.

Entering the hospital and passing all those familiar sites; the gift shop where one of the nurses bought E a teddy bear; the stairs that led down to the cafeteria when the elevators were being used during peak visiting hours, even the bench on the forth floor where I spent many afternoons waiting for shift change to be done so that I could go back and take up residence in my favorite rocking chair, holding E, dreaming of the day we finally got released.

Until you have a child that must remain in the hospital while you head home, you don't realize how very difficult it can be. Papa Pig and I entered that hospital in the middle of a Friday night excited about our beautiful daughter's impending birth. We could never have expected it would take twenty five days for her to make that journey home with us.

Being back there yesterday reminded me of the day we took the carseat in for her carseat test. Every child in the NICU must pass a carseat test prior to being released. I can still recall the looks we got as we walked out of the hospital following the test with an empty carseat. People automatically looked down to see the new arrival only to discover an empty seat. Some asked where the baby was, some just turned the other way unsure what was the proper thing to do. For those that seemed interested, we explained she was in the NICU, but that soon she would be heading home with us. The carseat test was one step closer to those double doors out front.

After A's appointment I walked her down to the NICU to show her what we affectionately call E's "first home". I noticed that my favorite neonatologist was still on staff. Dr. S was by far the most amazing and caring doctor that I have ever met and he was a huge source of support for all of us. I was thrilled to know that he was still there helping other families through one of the most difficult times of their lives.

As I sit here trying to finish this and am constantly interrupted by E wanting me to "beep" her nose, I am once again reminded that we are one of the lucky families. There are those that never get the joy of walking out those double doors with their baby safely in their carseat heading home at last. Yesterday brought back many emotions, not the least was absolute joy that I have my little girl here to end my blogs suddenly.

Sometimes deja vu reminds us of just how far we have come.

E and her teddy from her favorite nurse. She still has that bear.

E today eating a Bottle Pop.

Surviving a blackout

Thu, 21 Jan 2010 00:44:44 GMT

Yesterday we had a rare occurance in Southern California; storms that packed upwards of 75 mph winds. Now, I am used to these kinds of things back home in Texas, but in the eight years I have lived here, I have never seen anything quite like this.

By the time we got back from picking everyone up from school, several trees had toppled knocking out power on our block. Papa Pig is out of town and I was at home with six piglets and no power. I was starting to feel like this was some kind of test that I was destined to fail.

My piglets are computer age piglets. Even my four year old knows his way around the computer better than most adults. What in the world was I going to do with them in the pitch dark for the several hours until bedtime?

After the panic wore off and I realized this was going to be a long term situation, my mind started reeling. It was too dark for board games and E was bound to just try and eat any game pieces anyway. First thing on the list was to find as many candles as possible. That in itself was hysterical. The sounds of "ow, who put that wall there?" had me laughing so hard that I was really not much help in the search department.

Once the candles were in place and lit we decided to play our version of Survivor. Poor J2 got voted off the island four times (twice voting himself off) before we tired of the game. It was decided that we needed to attempt to build a fire in our fireplace for warmth. Off J1 and I head to the bedroom where the fireplace is located to do our best Boy Scout impression. We failed miserably, but the other piglets had a good laugh at our feeble attempts.

Papa Pig called to give us detailed instructions on how to build the fire. I did what every normal person does when faced with a challenge, I loaded the piglets up and we headed to Target for some fire starter logs. I then used Papa's directions as stuffing for the fire. Hey, he has his way and I have mine. The end result was a fire that lasted well into the evening.

Once the fire was going strong, we all retired to my room for a campout. We told scary stories, played flashlight tag (which I wouldn't recommend in a small bedroom with eight people) and just enjoyed our evening. I can honestly say I haven't enjoyed myself that much in a very long time.

The piglets ended up sleeping in my room near the fire and power was restored at around 6 this morning. They are still talking about how much fun last night was and hoping that the power fails us again tonight. I am thinking maybe we will do a "lights out" night once a month or something and relive the fun.

Finally, to my fantastic piglets; you guys rock. I have never been more proud to be your mom than I was last night. You all could have made it much more difficult, but instead embraced the adventure and made me remember why I wanted this job as "mom" in the first place.