Thursday, February 14, 2013

Guest Post: My 1 in 100

Being pregnant for the second time seemed like it would be a piece of cake, I mean I had already done it before, so naturally it would be exactly the same, right? Well, throw in a crazy case of the pukes ALL 37 weeks and add a crazy toddler to the mix and it's nothing like the first time being pregnant! My pregnancy went very well up until the 20 week scan. We were so excited to find out if we were going to have another little girl or would there be a boy in our near future, not to mention the excitement of just getting to see your baby on the screen, it truly is an amazing thing. We could see for ourselves pretty clearly that we were going to have another little girl and  we were thrilled! The tech was taking the usual measurements but always seemed to keep coming back to the heart. After about 2 hours the tech gave up and said the baby was just not cooperating, they just couldn't get a clear shot of the heart so we should come back in a week to try again. No harm no foul, I would get to see the little nugget again, how could I complain about that! I honestly was not worried at all and went ahead and scheduled the ultra sound. A week later they still could not “see” what they wanted to see, once again blaming it on the baby not being in the optimal position. Because of this it was suggested that I go to a specialist to get a fetal echo. This freaked me out, “what does that mean is there a problem!”. Once again I was reassured that it is usually nothing and the only reason to see a specialist is because they have much better equipment. So we made the appointment. At the time I thought waiting a week for the  fetal echo was the most stressed out one could ever be, I now know the body can take on much more. The fetal echo came and went without a hiccup, it literally took 5 minutes for the doctor to tell us everything is perfect and we have one healthy little girl :)

Fast forward about 15 weeks...

11/2/11 at 11:00am our sweet 8 pound light brown hair, blue eyed baby girl was born. Jordan Paige. I was so worried that I wouldn't be able to love another child as much as I did my first, boy was I wrong! She was precious and perfect, I couldn't wait for our family to meet her. After being transferred to the postpartum wing I was anxiously awaiting for the nurses  to bring Jordan back to me (after her bath and check up). They soon brought her back but the head nurse informed me that they had heard a heart murmur. To be honest I didn't know what that meant and honestly I wasn't even freaked out when she told me. Just as a precaution they wanted a pediatric cardiologist to do an echo on her and it just so happened that one was coming in to see another baby. Once again no big deal, right, RIGHT?

“your daughter has a very large hole in her heart, it is called a Ventricular Septal Defect or VSD and she will require Open heart surgery with in her first year of life.”

Before then I had no idea that Congenital heart defects are the number 1 birth defect in America, heck in the world! Did you know 1 in 100 children are born with CHD? I also didn't know that Jordan was very lucky to have been diagnosed within hours of being born. 2 out of 3 babies with CHD get sent home undiagnosed where they can then suffer life long effects and even death! I kept thinking to myself this is an emotional roller coaster from hell. Once minute on a complete high of becoming a mother for the second time only to be knocked down into a whirl wind of the unknown.

We were able to take Jordan home but had bi weekly cardiology appointments, bi weekly pediatric weight checks on top of regular new born appointments. By 2 weeks of age Jordan was in congestive heart failure. By 4 weeks her weight gain had essentially stopped. I nursed my first daughter until she was 7 months old and was completely prepared to do the same with Jordan; however Jordan's heart was pumping too much blood to her lungs which in turn made her heart work in over time making her burn more calories then what she was taking in therefore breast milk just wasn't enough :( She had to go on a strict diet of what we called “protein shakes”, pretty much breast milk mixed with a TON of formula and not that much water. I know the benefits of nursing, especially a sick child, and it crushed me everyday to know that I literally could not provide her with what she needed. I made it my mission to have a stock pile of breast milk for whenever her surgery was and for after. Hahah my husband made fun of me because I filled 2 freezers with expressed milk in a relatively short amount of time. I had so much that I actually started donating the excess and at one time I was single handedly “feeding” 4 babies! Back to little miss Jordan though :)

The beginning of February 2012, at a routine cardiology appointment, Jordan's echo showed that her right ventricle had developed what are called muscle bundles or right ventricle hypertrophy. This changed the game and we now had to schedule surgery to prevent permanent damage to her little lungs. She was only 3 months old.

Those few weeks before surgery were very intense. My husband was out of town, the girls and I were on lock down and couldn't go anywhere for fear of germs, and well let's be real my baby was going to have Open Heart Surgery, that was the only thing on my mind 24/7. Her surgery was actually bumped up by 3 weeks, by request of her surgeon, which was a shock, but later I realized this truly was a blessing, it was 3 weeks less of stressing out about, “what if”.

Feb 29, 2012, leap day, my husband and I handed over our almost 4 month old 10 pound  baby. We waited the 5 hours only receiving a text here or there about Jordan's progress; “ surgery started”, “By pass machine on”, “by pass machine disconnected”, “sewing up now”, ect. After Jordan's surgery the Doctor told us she actually had  a more severe defect then they had thought, her new diagnoses was/is Tetrology of fallot. They were able to patch her VSD and close a PDA(patent ductus arteriosus) in addition to shaving down the right ventricle muscle bundles. Now came the hard part, being reunited with our sweet girl.

The cardiac intensive care unit (CICU) just plain sucks. It is all babies or very small children who are all very very sick. Seeing Jordan for the first time is something that will haunt me forever. A tiny lifeless body with tubes going every which way, the humming of the ventilator breathing for her, the various alarms going off every few seconds, it is just something no parent should ever have to see their child go through. Jordan was a rock star and was able to come off the ventilator about 12 hours later and after 26 hours of being in the CICU we said PEACE OUT and were moved to the heart and kidney unit. We “slept” on chairs and not so comfy couches while getting up every few minutes to check on Jordan. She just kept doing awesome and within 5 days of having open heart surgery we headed home!
Slowly but surely Jordan stated gaining weight, on breast milk only by the way :) she started rolling over and surprised everyone at all her post op appointments. 8 months after her surgery we were given the clear from the cardiologist for 1 year, that's a HUGE step for her and for us!

Today Jordan is 15 months old and so full of life. She has the most amazing blue eyes and the best raspy little laugh :) Although a bit under weight she can still out eat her 3 year old sister haha. Jordan Paige is my hero, how someone so small can endure so much in so little a time and still be genuinely happy I will never know. I am proud to be Heart Mom and I am proud to have a Heart Warrior, My 1 in 100.

February 7-14th is congenital heart defect(CHD) awareness week. Jordan's story is just one, one of the lucky ones. Every year more than 91,000 LIFE years are lost due to CHD.  Something needs to be done. To put it in perspective twice as many children die from CHD each year then from ALL forms of childhood cancers combined, twice as many! Please spread the word, learn, educate. Who knows could your child be the next 1 in 100?

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