The Wild Wild Wests

Today was a very long day for Paxton and I, but so worth it in the end.  We made the journey to St. Pete for his first round of rechecks since he was released from the hospital on Wednesday.  He had to see his cardiologist, get  xrays , echocardiograms and ekgs . All of which came back great for his anatomy.  We were allowed to bring him home again which was such a relief since I was told on Wednesday to always bring a bag for these recheck appointments "just in case".  I was nervous to say the least, because I know how fragile HLHS babies are in the time between their Norwood and Glenn surgeries.  I have to say I spent the greater part of last night waxing and waning between the pure joy of being home and the gripping fear of possibly not returning tonight.   I packed my bag with tears streaming my face, hoping and praying that we would get to come home. I doubted the little fighter that is my son and I should know better for he has time and again surprised us all in how...

I mentioned in my last post to stay tuned... and I mentioned that because we have big news to announce! Paxton was released from the CVICU on Wednesday evening, the day before Thanksgiving! My goal since I found out Paxton was sick and that he would need surgery was to have him home in time for Thanksgiving.  When we got to the week before the holiday and no word about home had been mentioned to me after two months, I bumped my goal back to Christmas. Only I got the call on Monday that they were considering letting him go home in 2 days. I roomed in with him to prove that I could do ALL of his care without the help of nurses.  I learned his meds, his monitors, his feeding tube care and was retrained in cpr. We did not mention a word to anybody because we were told in the beginning of all this that you never tell anyone until you are in the car. To many times they have told parents they were going home the next day only to have something happen that night and they don't lea...

Thanksgiving is just around the bend and it obviously tends to make people stop and reflect upon what they are most grateful for.  This time of year just does that to ya! I myself have been spending the last 24 hours in a playback movie of my life the last couple of years and boy do I have a lot to be thankful for this 2009.  We have one heck of a year behind us and one heck of a year ahead of us. For us,  our greatest blessings are smiling at us each day. As we head into the holiday as a family having been separated for all to long, we know that while we have never taken each other for granted, we will no longer ever let the little things take precedence over each other. The clean freak that I am has learned to let it all go and spend each precious moment with my children and husband, for it will surely be still be there when I am good and ready.  My husband has found an appreciation for me that he may have never known was there until he was thrust into "Mr. Mom" role overn...

Why would we not put our toy animals in the straw of our sippy cup... or shove fistfuls of food in our mouths... Because then you get this... and this! Ahh...life at home with boys! How I freaking love it! *************************************** Paxton had a good day today. Mommy held him nearly the entire time and he finally got his first bottle this evening, of which he gulped down in approximately 2.4 seconds! Tomorrow, we work on weaning him off his i.v. medications.  Keep your fingers crossed that this goes well. Paxton has not had great luck in the past with this. Sadly, Daddy did not get to come see us this weekend, because everyone has colds on the home front and we can't risk Paxton getting sick.  We miss our Sundays with Daddy, but are hoping to be enjoying them at HOME with Daddy very soon!

It is after midnight as I begin this post.  Today was so highly emotional and raw.  I am weary and I am weepy. In fact, I think I have been crying for like three hours straight now.  Life right now...it's a lot to take in day after day, I can't lie about that.  Today it seems to have all caught up with me.  I know that we are close now. I know the anticipation of it is hitting both my husband and I hard. My husband is the rock. He is positive. He smiles. Never gets down. Never complains. Tonight, for the first time since this all began two months ago, I see that he needs me back more than ever. I am torn, always torn. I am a wife and a mommy and I want to be able to be those things to my family, but instead today I sat bedside in a chair because I could be nothing. I couldn't help my husband. I couldn't help my two older boys who are crying out for me and I couldn't help Paxton who was in pain and hungry. I tried to hold him tonight but since he cannot eat until...

It is late and I am tired as I write this so it will be short and sweet until tomorrow. I just made the two hour drive back here to St. Pete after spending a night at home.  I had a wonderful day with my boys, which I will blog more about tomorrow. As soon as I returned here, I went straight to the hospital to snuggle with my little fighter. When I walked in he was awake looking all around him. I scrubbed in and immediately picked him up and within five minutes he was fast asleep on Mommy's chest. We sat there together for an hour and a half. I smelled his hair, stroked his back and gave a hundred I missed you kisses.  I just wanted to quickly jump on here in case anyone may stop by tonight or early morning tomorrow to let you know that Paxton will be going into surgery tomorrow to get his feeding tube placed. While the surgery itself is relatively quick, about an hour, easy peasy compared to 5 hours of open heart surgery actually, it is still always a risk with these littl...

I once heard a quote: The days go by so slow and the years so fast. It's completely true, my friends.  The days here go by sooo slow and yet we have been here SEVEN weeks already. We are nearing the two month mark.  When I think of it that way, I can't believe it has gone by that fast. I can't believe Paxton will be two months old next week. Some days I feel like I should still be pregnant. The end of his pregnancy, the delivery and the first few weeks after his birth were such a whirlwind of time and emotions that I haven't had time to wrap my head around all that has happened.   I am ready. My husband is ready. The boys are ready. Paxton is ready.  I tread EVER so lightly when I say this, but he has taken a turn towards AWESOME.  Yep, you thought I was going to say a turn for the worst, but he has not. Last week, he was in some weird funk, we thought he had an infection. Doctors postponed his feeding tube surgery,  sent out all kinds of cultures, star...

It truly is amazing how we can spend a lot of energy wishing time would hurry up, only to turn around and realize it's over in an instant. The high seems to come not from the actual event, but from the anticipation or dread of it.  I have spent today realizing just how far I have come in one year.    One year ago today, I went in for what was meant to be a regular ultrasound. One year ago today, I laid on the table and saw my third baby curled in the fetal position, gone. One year ago today, I had to say good bye to the dreams that I had for him.  One year ago today, I hit rock bottom. One year ago today I wrote this: I am astounded at how the time has flown. It seems like just yesterday that I had to be escorted to the car by my husband because I could not see through the tears to make heads or tails of which direction I was headed.  I would have had a 3 year old, a 2 year old and a 1 year old. Would have does not mean should have.   Little did we know, God had big plans for us . ...

I am sitting here in my room at the Ronald McDonald house that ahem...has no t.v. so instead I am listening to Michael Bubles I Wanna Go Home on Pandora. He says it all when he sings: I feel like I am living someone else's life. It's like I stepped outside. When everything was going right.  I wanna go home. This room is empty and plain and I know many have sat in here before me, feeling all that I am feeling right now. My stuff remains in laundry baskets unpacked only touched to grab an outfit to go see my boy.  I am attempting to pay bills and do all of the "normal" things in life that don't stop when you have a sick baby. It is taking me forever to get through this one thing I need to do, but paying bills seems so unimportant right now and yet life is sadly, all about money and bills. The medical bills have already started pouring in. They sure don't waste any time do they.  It's never ending. What is ending at some point, is this stay here. While I can...

Today our son turns one month old!  There were days when I was still pregnant with him that we were not sure he would be alive to see this day. God, has blessed us. He is here. He is perfect. He is fighting the biggest fight of his life.  Just as sure as the H (home) word was mentioned to us as a possibility in a couple of weeks yesterday, I in turn, got the phone call at 2 a.m. this morning that his heart is struggling.  His heart is working so hard to keep going. It is a delicate balance. One day everything looks picture perfect and hours later it all changes.  I am working on not looking to far down the road, one day at a time, one hour at a time, one prayer at a time. Today our son turns one month old and the alternative makes me realize that I/we can do this. Even though there will be many tears through out this, many angry days, sad ones and joyful ones. I do believe that God has a plan for us and for our son and as we wait to learn what that plan is, I am finding a patience I ha...

To begin with I must mention our friends at Baby Be Blessed who have nominated Paxton as their recipient of the month for November. If you click on the title of this post you can head to their website and check out Paxton. I mentioned them in our last post as a wonderful company who made Paxton's "lamby bear" that he has had with him in the CVICU since the day he was born. You will see it in many of his pictures. I am pretty sure that lamby bear will be his lifelong friend. As I have said before, I am blown away by the love and support people we have never even had the pleasure of meeting personally, are showing to our baby boy! He has brought so many people together, taught so many people valuable lessons, and reminded us all how precious life is! Thank you again, from the bottom of our hearts to Baby Be Blessed and so many others for the kindness shown to our family. ************************ In other Paxton news, he is doing amazing. He had a little rough evening to...