Friday, February 24, 2017

We're Back!!!

We're back!! I thought I had retired this blog. That is why I stopped posting on here, very unceremoniously, which I apologize for by the way, I figured Lily was so healthy, there was no reports. We went to the cardiologist every 6 months, got the all clear for another 6 months, wash rinse and repeat.

Now don't get me wrong, we have had some ups and downs medically, such as a kidney infection that hospitalized her. Her INR goes up and down so frequently, and sometimes it shoots so high she becomes a fall risk, that we have to weigh our options of safety. But compared to what used to be, that is nothing, speed bumps. Well, about 2 years ago now, maybe a year and a half, we noticed a hole (VSD) in her heart. At first Dr.R started wondering if she had an infection of the heart, there were so many things thrown around because you don't just get a "new" hole in your heart out of no where. So I went home, stressed, for the first time in years. Cried for the first time in years over her cardiac conditions, then I started thinking about things because it just didn't make sense to me. Well that night I had a dream that took me back to her 4th open heart surgery. Dr.C was telling me how when he was putting in her mechanical valve he noticed a very small hole, but not big enough for him to close. He said it would have done more damage at that time do it, because of how she develops scar tissue. He told her father and I it should close on its own.

So in the morning when I awoke, I dug out the journal I kept from her hospital days, found the entry from her 4th surgery, and sure as the sky is blue, I had it written down. I emailed her cardiologist immediately. (Her surgeon retired, and the hospital she had all her surgeries at had merged all its patients with the children's hospital, so they didn't have all those notes.) So he requested everything, I received and email later that same day telling me I was Clara Voyant and thanked me for keeping that journal as it helped.

So now, fast forward to today. Up until recently, Lily, even though there was that hole, everything was fine, it was there but it wasn't bugging anything. She does have what is called Sick Sinus Syndrome or SSS, but it isn't in a constant state.SSS is pretty a uncommon heart rhythm disorder. It is not specific to a disease, but rather to a group of symptoms that indicate the sinus node, the hearts natural pacemaker is not functioning properly. How did this happen? Well, Lily had an ablation after her 3rd open heart surgery because of her heart arrhythmia, and it weakened that node. Now, when her heart is at a rest rate it dips to a dangerously low rate at some points, it is more common when she sleeps. But it isn't a constant. So we watch, we wait, and one day she will need a pacemaker to keep her heart beating, but no yet.

The hole in her heart started out at .5mm (Think mechanical pencil lead). That's not a big hole, that is why we watched and waited. 6 months ago we were fine, but something shifted, and we think it has to do with her St.Judes mechanical valve. Dr.R thinks it is either 1: to small; which is very unlikely because the valve is a 19mm valve, which is the size of an adult female. OR 2: the valve itself is failing. She has leaking around the valve, which is screwing up the pressures in her heart. We have to watch those carefully because of the repair she has. The hole has gotten bigger and now when the heart is constricting, the blood not only goes through the hole, it gets pulled back, causing a back flow, mixing blood. The hole is still relatively small, I wasn't given a size this last time though.

Our course of action is a cath and a transesophageal echocardiogram. This is to get better views of what is going on in there. At which point they will take all that information to their surgery conferences and start formulating our next steps. If the valve needs to be replaced like he thinks it needs to be, she will have to have another OHS, she will go on bypass, and that scares me. Lily's heart has a really, really hard time restarting. Remember that SSS I was talking about, that comes into play here. I don't want her having a OHS being the reason she has to get a pacemaker.

I am a nervous wreck, as I always am, I will be until it comes time to walk through the fire. On the day of procedures and surgeries, I am so calm, and I know it is God's grace. He'll see me through this, he'll see her through this. And when we come out on the other side, we will be stronger for it, is just the passing storm and learning to dance in the rain again. It's been so long, I guess I've forgotten how.

I will update as soon as we get news of a date, or anything happens with Lily.

Wednesday, December 21, 2011

Blessings of a mother

My babies. My existence, the reason I am a better person.
My Elaina, 7 months old, starting to walk. My sweet angelic girl, I run my hand down her chest and feel the difference in my girls. Smooth skin, not marred by scars, no wires holding together her chest, just smoothness. I have been able to do everything with her, that I was not able to do with her older sister. It brings me such joy and such sadness, I've never felt so many emotions before when it comes to my children. I have been blessed with 2 beautiful girls, what more can a mother want?

Oh little Loogie....yes, we went there, he got the nickname after he got sick and was coughing up "Goop" as he calls it. I told him what it was and that it resembles his name....he didn't like that very much, nor did he find it as funny as I did. Yes, I am horrible, I got a chuckle at my sons expense, but I the mom, I am allowed, if I wasn't, no one would be able too. My not so Little Lucas, is still a BIG ball of energy, I think instead losing it, as we all hoped when he was a toddler, he has just gotten more. I think he back stores it in all honesty. The kid can run and run for hours, rivals the energizer bunny, now that I think of it. I can't believe that he is 8, I remember the day Chris and I drove home from the hospital with him, he was screaming in the back, and Chris looked at me and said, "Only 17 years, 363days left before we can kick him out." All I thought is "I only have 17 years and 363days to make him a momma's boy and not want to leave home." Yes I know, bad, but that's how much I NEVER want my kids to leave.
Lilyana Annsaleigh, a unique name, for a uniquely special girl. I love knowing she has finally evened out and is doing so well. To know we are done with surgeries for the remote future, brings such joy to my heart. I know the future may change it all, but we are in the here and now. Lily, who once could roll with the punches sorta speak, now gets the smallest owwie and screams and cries like her limb is hanging by a thread, and that whatever got hurt, needs to be amputated. Seriously, not joking, I hate to say it, but she is such a baby. Oh and the drama, and the attitude. Lord help me when she hits her teen years. She rivals me in the drama department. My family has affectionately nick named me Sarah Bernhardt, I shudder to think who they will name Lily after, once they find her flares are worse then mine. All in all though, she may be dramatic, and possibly could win an Oscar for her performances, I try to remind myself, I could be living without them completely. So I take them in stride and only battle the ones I deem absolutely necessary. My Princess Tom-boy, you will still find hotwheels in her purse, next to her lipgloss and necklaces, I want nothing more, then to curl up on the couch with her, and snuggle her smells and listen to her heart tick, she on the other hand, would rather run around and play hide and seek....if only she would realize, I can just close my eyes and follow the tick...thankfully the boys haven't figured that one out yet, that's just going to suck for her when they catch on.
Austin, sweet sweet Austi boy. He is the joker of my little bunch, always quick on the draw with quirky sayings and comebacks. He defiantly brings a whole new meaning to "Kids say the Darnedest" But no matter how much he jokes, he is the most loving, sweet hearted little boy you will ever meet. I can say "No" to all my children and stand my ground, expect for him. His eyes, they will get you ever time. Such expressive eyes, just like mine. We may smile on the outside, but our eyes say what we won't. Of all my children, his temperament reminds me the most of me. I can't wait to see what kind of young man he grows up to be, but I am in no hurry, I am cherishing the time I have with him as a little guy. I know there will come a day where he will ask me to drop him off around the block and not kiss him in public. So for the time being, I will enjoy every ounce of attention I get from this little man. He is my momma's boy through and through, he will gladly tell you so himself.
There is nothing better in this world then my children. They are my first waking thought, on my mind throughout the day, and the last one before I drift off slumber land. I am a mother of 4 of the best kids, 4 of the smartest kids. Lucas is in AP classes, Austin is on track to be placed in them next year, and Lily is WAY ahead of the curve. She was ready for Kinder this year, but she still has another year to wait. This holiday season has been very hard, I loved to decorate with the kids, loved seeing their face as we plugged the lights in after hanging them. I miss the sounds of jumbled and butchered Christmas carols, being sung around the house. Giggling with them as they sing "Jingle Bells, Batman Smells..." You would think the pain lessens with time, that it wouldn't hurt so bad because they have been away from me for over a year now, but it hasn't. I still hear their cries when they aren't here. I know when they've had bad days before they tell me about them. I am their mother, I will always have these feelings. They aren't with me because their fathers "situation" is supposedly better then mine. They aren't with me because of my stupidity and kindness. I was to nice in court, I didn't tell the judge about all of their dads game playing, hours of neglect to them because of it. Not trusting him to watch after the kids while I went to the grocery store because he was to absorbed in his games. Now, he sticks the boys in front of the TV with games, while he plays his, instead of playing with them. Lily runs and does her own thing with Grandma, instead of with mommy....I got the crap end of the stick....because I didn't fight dirty....Not because I was not a good mom. I may have been a crappy wife, but I was and am an awesome mom. I have no guilt when it comes to mother, I know I have done nothing wrong in raising my babies, other then us not being a complete family anymore. Yet I know its for the best, because there are days I want nothing more then invest in a good frying pan, you know, like the ones in Tangled....."Frying pans, who knew, right?"...yup...that's me...

I look forward to my weekends with the kids, even when they wake up at 6:30 in the morning, at least I have them here to wake me up and be with me. I love them more then words will ever be able to explain for me. They are my world, my reason for being, they are my life. I love you Lucas Christopher, Austin Nicholas, Lilyana Annsaleigh, and Elaina Elizabeth-Jeanine. You will always be my babies, no matter how big you get.

Love Hugs and Blessings
Life Unscripted