Hit the button above to head on over the Stefenie's blog and read her child's heart story. She has started this so that we can share our stories and spread awareness for congenital heart disease. I jumped on board very fast, because I believe one of the reason's our sweet boy was born with this defect was to help spread awareness because before Maccoy, even as a nurse I didn't know the statistics. I thought if there was a problem it would be found with sonogram before the baby was born but Maccoy is proof that's false. So take some time and meet some of the other Brave Heart Babies/Kids they really are Amazing!!
Our Story begins after we find out that our pregnancy has went from a normal single pregnancy to a High Risk Twin Pregnancy. Even though I was high risk and having bimonthly sonograms everything was going well both babies were growing very well, I was gaining the weight and still doing my normal activity. We had between 25 to 30 sonograms during this pregnancy and multiple visits with the perinatologist. None of which turned up any issue with Maccoy's heart (do you detect some anger/frustration). I went into labor on my own(a first) on July 3rd 2009 unsure of weither or not it was the real deal a 10:30p.m. trip to the hospital would tell us it was time to meet the Twins! After a very long day/night in labor(you would think number 6 and 7 would come fast hahaha stinkers) it was time to meet our little ones at 12:32p.m. Baby "A" Cayne Truitt (heart healthy) was born and following him many minutes later at 1:07p.m. Baby "B" Maccoy Truston was born. All seemed fine for the first hour after birth, but a apnea episode would land Maccoy in the NICU for 5 days. During the first few hours of him being in the NICU many tests, scans,labs etc. were run and the words innocent murmur where being used, it was a Sat. eve. so specialist unless really necessary weren't seeing patients, but we were told that a pediatric cardiologist would be in the next day to see another patient and they would have him evaluate Maccoy. Sunday July 5th our lives changed forever. I should have known when the Dr. came in with 2 nurses following him carring a box of kleenex that something was wrong. He looked at us Clint holding Cayne and me in my hospital bed and said "your son has a heart defect known as Tetralogy of Fallot he will need open heart surgery to repair it" after that I quit listening I wanted to run out of that room screaming and snatch up my beautiful, perfect,pink,sweet, baby boy and leave that hospital he was wrong he had to be, but instead I held it together and waited for them to leave and then I cried for what seemed like hours as I did for many days and hey I am not going to lie I still do on certain days like the day before a cardiologist appt. or when I notice his skin color a little different. It's scary to have a heart baby. We brought him home 5 days after his birth veteran parents to 5 kids, but we had as many questions and fears as first time parents. I am a nurse so I wanted to have him on a saturation monitor so I could know what he was doing all the time, I was constantly checking his color and his breathing, I hardly ever put him down, I slept with him snuggled up next to me on his monitor waking to check on him constantly. Always preparing for the worst and hoping for the best. Maccoy was amazing. He gained weight and hit all his milestones never had a TET spell. All was going picture perfect and even though we knew the time would come for his repair nothing can ever prepare you for that day when they say "its time", or for the day when they call you to schedule "the day", or for the drive to the hospital on "the day" or the feeling of handing your baby over to the nurses and waiting,pacing,hoping,praying,crying, on "the day" for the first time you lay your eyes on your sweet baby right after a life changing surgery, or for the days of recovery ahead and the hurtles he has to jump over, but after that is over and you leave (even if you know you will be back) the feeling of such relief that he made it and his heart is mended not forever but for now and maybe you can worry just a little less for awhile. Maccoy had his full repair on April 14th 2010 at 8mths old he will need a valve replacement in the future but our cardiologist is hopeful that by then it won't require open heart surgery (can you imagine?) Maccoy is my hero he is the strongest little guy I know and he amazes me everyday..
