Wednesday, February 24, 2010
The mind can play dirty, nasty tricks on us. Mine loves to at night, when I am in a deep sleep and have no control over the thoughts that bombard it. I am so very busy during the day that I am able to keep any scary, worrisome thoughts at bay. Only problem is they love to catch up with me at night. I spent many a nights a wreck while Paxton was still in my belly, but this, now, is just awful. I guess it's because I am so close to my little man now. That's not to say I wasn't bonded with him in utero, I most certainly was, especially after losing Tadem, but now that he spends nearly every minute of the day and night with me, it's a bond I cannot describe. He lights up when I walk in the room. He calms when I (and Kimmie, his Nana, shall we call her =) holds him. It's such a bond. So when last night, I was in the deepest sleep and dreamt that my husband was laying on our bathroom floor sobbing and screaming "he's going to die" I cannot describe to you how I felt when I woke. It seemed so real and my heart was panicking as I remembered how I truly felt like I was in that moment. While it was just a dream, or nightmare rather, it shakes me to my core.
Anyone, who knows me and knows me well, knows that I am full blown o.b.s.e.s.s.e.d with my kids! All three of them, but there's something that hangs in the balance when you have a special needs baby. While I know something could happen to any one of my kids on any given day, I know the chances of it happening to Paxton are much greater. It's hard to hover between positive and scared to death. It's hard to have faith in what's meant to be and what I want. There are no words really and yet I write. I try to explain what it feels like to do this. I do it for me. I do it for others that have yet to. Paxton is amazing and next week we will make the journey to Tampa where I will hand him over so doctors can put him under anesthesia and lead a camera through his groin to look at his half a heart. Day to day it is what it is, but writing it is such a harsh reality. He is sick. Strong, but sick. Those closest to us will tell us he is pale, blue and purple looking. Not in a bad way, it's reality. I am grateful for their honestly. I see it, how could they not. Then again, when we go to playground outside in the fresh air and people gander at him, I see they have no idea. Imagine looking at such a beautiful baby and never having a clue the story that he holds. I wonder if they too notice his paleness and don't mention it or if ignorance really is bliss.
I hate all of this and yet it's the best thing that's ever happened to us. How is that possible...
Ohhh, this life. Never ceases to amaze me and yet has always prepared me along the way. Such irony. I continue to keep myself as busy as possible. I smother all my babies in Mommy kisses. I find strength where strength is low to take care of them better than I ever have, honestly if that's possible. Not trying to toot my own horn, just can truly say that I give my kids my all! My husband would agree with that any given day of the week. He says he wants to come back as one of our children. Can't say I would mind either = )
Paxton, in spite of my nerves, continues to do amazing. We have had zero incidences to date since he first came home. I had fully prepared myself for some emergency trip by now and yet he has other plans. He loves it here at home. Thrives here at home. He is as enamoured with his big brothers as they are with him.
He is at least 16 pounds now. Alllmoossttt rolling over. Talking up a storm and loudly, guess you have to in a house full of rambunctious boys, yes Paxton you will fit right in. He has his first two teeth literally just under the surface. Moved up to a size two diaper. Is totally in between 3-6 month clothes and 6-12. The 3-6 are wicked tight and the 6-12, he looks like a drowned rat in. He has begun eating baby food (thanks Nana Kimmie) and loves, loves, loves it! Opens his mouth and gobbles it all up. This is fantastic because any extra calorie we can pack on him the better!
I make his own baby food and he is pretty thankful. While I have always been organic, I have never done home baby food and I find it hysterical that I am doing it for the third and not the first. I just learned how freaking easy it is and I feel that Paxton has enough against him toxicity wise, if this is any indication:
Life continues to drop me to my knees, begging for mercy and just as quickly lift me up and remind me of all of my blessings. It's funny how that happens. The times that I feel like I am drowning and will never return are just as powerful as the ones that remind me how incredibly awesome this life is. I can do this. Paxton does it every day. I too, can be that strong. I too, WILL be that strong! For him, for all of us.
Tonight, when I lay my weary head to rest, whatever dream or nightmare chooses to make its way in will be just that. A dream or a nightmare.
Sweet sweet dreams my friends. My babies.
Tuesday, February 23, 2010
So here he may look like me but when you look at the next picture you will see he in fact looks nothing like me. He is a pro-te-ge of his Daddy!
See! Protege'! Austin is Mommy through and through.
Three out of four of my men. As my husband always says, "Mamas queen of the castle with four boys in the house." I mean really, do I look any happier. I just love being in the midst of my men!
This picture, oh this picture melts my heart. Look at how the brothers are holding their mouths exactly the same as they watch oh so intently whatever float was going by. It's precious!
This my friends, is what life is all about...
Monday, February 22, 2010
Oh dear friends, I sure feel like I have written this so much lately, but exhaustion hangs on my every limb. Not only did I catch the flu, but apparently my body doesn't feel the need to sleep anymore. I will fall into bed exhausted beyond measure only to wake up around 1 and stare at the ceiling for hours and I do mean hours. It's taking a toll on me. I am guessing it's due to my nerves. I find my mind wandering and have to get up to distract myself. I will say I have read and finished the best book called THE HELP by Kathryn Stockett. I was literally sad that it ended. That was a wonderful distraction. If anyone knows of another book I should buy to distract me in the next few weeks, do share please!!!
Thursday, February 18, 2010
First off I would like to thank my readers who continue to fill me up with their encouraging comments. I have been contacted personally by more than a few of you. Many of you whom I had no inkling were even reading my random thoughts and feelings. It more than fascinates me why someone would stop and continue reading about us when they don't even know us and yet I do it too. There are a handful of blogs I follow, big blogs mostly and a few personal near and dear to my heart blogs, and to know that I have people that I don't even know that have "stumbled" upon us and reach out to us is heart warming. Thank you. Each and every one of you who choose to stop by whether silently or otherwise. I think our story is kinda neat and while this blog just started as a journal it has become a pathway to so many other things and I am just so grateful.
Friday, February 12, 2010
Wednesday, February 10, 2010
Well, in the midst of one vomiting child, two hacking up a lung and zero sleep for Mama I did manage to get Paxton to his cardiologist appointment today. As I mentioned in my post the other night, I have had a feeling that his next surgery is just around the corner and as intuition would have it, I was right. For starters Paxton is a whopping FIFTEEN pounds! That truly is amazing for his age and anatomy. I almost fell over, I really thought he was hovering around the 13 pound mark, but I guess those koshies really are paying off! He had an ekg and an echo done and all appeared well. His blood pressure is a little high, but we can't alter his medication any because it affects his potassium. As soon as the doctor came in my stomach dropped, I just knew what was coming next. He looked at me and said it's time to start thinking about the next surgery. They like to do the Glenn procedure between 15 and 18 pounds. Since he is 15 pounds now, by the time the actual surgery is scheduled he will be a pound to two heavier so as he said...it's time. Before the surgery Paxton will need to have a heart cath done. This is where he undergoes anesthesia and doctors go in through his groin with a camera and get a better look at his heart. An echo can only tell so much and they don't want any surprises come surgery day. This will require a trip to All Children's and an over night stay. So we are going to Tampa this Friday for the cath consult and to get that scheduled. From there we are looking at scheduling his Glenn in about a month. I am a nervous wreck. While I know he will be much better off anatomically after this, I am terrified. I am told his heart will not be working nearly as hard, which means we will not have to add calories to his formula and we can hopefully cut back/eliminate some of the 13 meds that Paxton gets in a day.
Monday, February 8, 2010
I started this post earlier today with an entirely different title and theme in mind. As life would have it, that has been postponed and I am going to once again be raw and real. I have been reveling in how amazingly well Paxton has been doing and keeping my focus on that as best I can. So, today when we were outside in the driveway for a little play time and I noticed his lips turning blue, I jumped up to assess him. I ripped his socks off to see completely blue/purple feet. I ran him inside to get a better assessment of him. While he was pale, blue around the mouth with a low heart rate (for him) his oxygen saturation was normal (for him) I took a deep breath and tried to refocus. I got the boys in and ready for dinner, we settled in and got ready for bed. I hadn't realized quite how deeply the event struck me until I went to rock him to bed. I just started sobbing. I held him to my face and smelled him, sang to him and loved him. We must have sat there for over an hour. He listened to me and eventually fell asleep. I just couldn't put him down. To many things were running through my mind. To many what if's. To many scary thoughts. I have done this here at home to this extent only a handful of times. Tonight, was harder than I can ever explain. As I rocked my youngest son in the dark, I was overwhelmed with what lie before us in just a little over a month. I have fallen so deeply in love with this little man who fights to be here with us every single day and I cannot imagine a day without him. It's not a road I want to think about, but the reality is he will be having open heart surgery and the fear that envelopes me is paralyzing. So tonight I melted. Melted like I melted when I found out he was sick in utero. I remember the night that I sat in my shower with my big belly and let out all the fear that I may never meet my son or that he may die shortly after birth fall out in waves of hot tears. Today the tears were tears begging God to keep him safe and here with us. I begged God to please allow Paxton to continue teaching us all not in his passing, but in his living. For he is such an AMAZING teacher. While I know all the worrying in the world won't change his ultimate destiny, I look at him and the worry washes over me come hell or high water. He is a part of me. He is my life. How do I not worry. How do I not panic. So I allow myself the meltdown that I need. Trying to push it all aside only makes it worse in the end. So I cried the ugly cry and allowed myself the time that I needed. I prayed and even begged, but whatever is meant to be for my little man is meant to be. I will spend every precious, God given moment smothering him in my love and every moment aside from that praying that God allows him to come out of this stronger than ever before. While the tears flow freely tonight, while the overwhelming powerlessness I feel paralyzes me I HAVE to trust in his purpose here on Earth. He was born and continues to thrive each day to show us what a miracle truly is. I have to trust in that...
Wednesday, February 3, 2010
AMAZING UPDATE AT THE BOTTOM (bring tissues):
Tuesday, February 2, 2010