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 he has handled each step that has been thrown at him. Whether it be open heart surgery at 4 days old, the closing of his chest a week later, an infection, g tube surgery, feeding, endless blood work, iv's or making the transition from hospital to home, he continues to prove how tough he is. Today was no different for he handled the two hour drive to St. Pete quite well. We stopped to feed once and pulled over on the side of the road to replace a lost paci. Road rangers rolled up on us and when I told them that we were pulled over because our little guy has a heart condition and is not allowed to cry for long, he proceeded to follow us the entire way to All Children's Hospital so that should I need to pull over again, he would be right behind to put his lights on to keep us safe. Such a kind man! The ride home he slept the entire way. I think he wore himself out crying at our last appointment of the day, which was an unexpected trip to his GI doctor to have his feeding tube checked. I noticed last night that it looked infected and immediately blamed myself for not cleaning it well enough. I made an after hours call to get him in today, knowing we would be there already. So, we headed another half hour north of St. Pete to Tampa where the doctor did indeed confirm it was infected. He praised me for noticing and told me that it was not in fact my fault, but that the tube was on to tight which didn't allow air to breathe and circulate causing bacteria to grow. So he scrubbed it (poor little Paxton turn a bright shade of blue during this from crying so hard) and replaced the cover on the tube with one that will allow it to breathe better. Once again being braver and enduring more than most of us can imagine!
Monday, November 30, 2009
Saturday, November 28, 2009
they watched football together! We are adjusting to life at home and taking it day by day. We are so happy to all be under one roof again. The older boys are beyond excited to have Mommy back and are loving their baby brother. It has been one heck of journey this far. Some days I didn't know how I would make it. Some days I wondered if we would ever all be under the same roof again, but here we are and it is heaven. I relish each and every second that we are here because we never know how things will change and we do have to do this all over again for his second surgery in 4 months. We know to appreciate it all and man do we! We are so blessed and as we jumped around hooting and hollering today trying to get our Christmas card picture for this year, I stopped in the moment, looked around at my beautiful family and sighed, we were home. All of us are home!
Tuesday, November 24, 2009
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.
Saturday, November 21, 2009
Friday, November 20, 2009
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 morning and is ravenous, just being near me made him root and try to eat...if you follow me! So I had to put him back in his bed because I was not going to torture him like that.
Thursday, November 19, 2009
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 little heart babies. So, I come to you late tonight asking for anyone who stops by to please take a moment and pray not only for the surgery to go well, but for his recovery to go smoothly also. If he handles surgery and recovers well, we may be able to go home in about 2 weeks. I am ready to get my boy out of the hospital. His brothers are SO ready to meet him and Mommy and Daddy can't wait to snuggle with him in bed. I will be updating tomorrow on facebook and since we have quite a few new visitors praying for Paxton via our blog I will be updating on his progress through twitter again until I can get to updating a post! It is located on the left side bar under the Blogher ad. As you can see, it has been a long time since I posted on twitter, sorta weird to see what the last "tweet" about feeling the baby kick before we knew he was sick and that we would be where we are right now. I remember exactly where I was when I "tweeted" that. It's weird how life does that to ya... Paxton is doing fantastic as of tonight, may God allow him to continue on this path towards home! Wouldn't that be something to be so very, very thankful for! Until next time, cherish the little things my friends!
Sunday, November 15, 2009
Wednesday, November 11, 2009
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.
Monday, November 9, 2009
If you have not listened to the song on my blog called Bring The Rain, please turn on your speakers, scroll all the way to the bottom and click to play that song. It is one of my favorite songs of all time and really resonates with where I am at in my life right now.
You all should enjoy it too.
Thursday, November 5, 2009
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 have never, ever known. I am learning what is really important in life. I laugh at what people complain about because all I have to do is walk into this hospital and look to my left and look to my right to see babies on life support and I find there isn't much to complain about. I am forever changed by this beautiful boy God has given me. I know my husband is as well. Actually, I am pretty sure a lot of people are changed by him. I do know that is part of his purpose here on Earth. He is one month old today. My, how our lives have changed in one month. There is a beauty in all of this that comes with seeing just how precious life really is. When I see him smile (most likely from gas =) I see beauty. When I look at his scar where he was cut open at 4 days old, I see beauty. When I see his strong Daddy holding him, I see beauty. When I see life at it's most fragile, but hanging on, I see beauty. In a world full of mass chaos, I choose to find the beauty in it. This does not mean that I don't have awful days, today has been a day of waxing and waning through tears and hope. Just as his life is a delicate balance, so are my emotions. However, when I walked out the door this evening to go reserve my room at Ronald McDonald house for however much longer we will be here and felt the cool air on my face, I felt a peace wash over me, truly I did. While some days that falters, I choose to look up to the sky and see the beauty. There lies my Grandma, my Grandpa, baby Tadem and God surrounding me with love and strength when it is lowest. I hope that anyone reading this will choose to find the beauty that is this life. Tonight, won't you stop doing the laundry. Leave the dishes until later and instead get down on the floor to play with your children. Smell them just once more as they lay peaceful in their beds. Then sit and snuggle on the couch with your partner. These are things I would give anything to have right now. It is nearing six o' clock as I finish this post and I am in a hospital by my sons bedside and what I wouldn't give for us to be home doing dinner, baths and bedtimes. Remember the little things my friends. Remember what's important and when you feel frustrated, as we all do, dig deep and see if it matters in the big scheme of things. There you will find your greatest life lessons.
Monday, November 2, 2009
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 tonight with a bout of "pukies" I have never seen this boy get sick to his stomach and let me tell you it isn't pretty. He hacks and gags and turns insanely blue! Paxton has not been quote "vigorously" gaining weight as he should be with the amount of food he is getting. (We measure it VERY carefully) It has been determined that he has increased pulmonary blood flow which is sending to much blood to his lungs instead of his body. His SAT's (oxygen saturation levels) and respiration's have been sitting pretty high, so an echo cardiogram was done and this was their conclusion. His heart is basically working so hard that he is burning off more calories than he is taking in. So today we started him on a new medication (oral, thank goodness) and increased the calories from 24k/cal to his breast milk to 26k/cal. Well, as soon as the first 26k/cal feed was finished he started gagging and salivating at the mouth. It was scary to see him trying to violently to throw up and of course he turned a bright shade of blue. He did this for several minutes until I got him swaddled back up and calmed down. We are assuming this is due to the increase in fat to his formula. It was just to much for his itty, bitty 7 pound system. He is almost a month old and still weighs 7 1/2 pounds. I am so grateful he had that extra bulk on at birth to compensate for the loss and lack of weight gain. He is still our "little peanut" Other than this, he is doing fantastic. He is taking the feeds orally like a champ and is getting much more coordinated and stronger every day. He is only on one i.v medication, remains off all O2 and is becoming very alert at times.
He also got moved to a big boy bed this weekend!!! He is so tiny it doesn't even look like there is a baby in it at first glance, but he seems very comfortable in it all swaddled up!
I am keeping my fingers crossed that we may be able to take him home for Thanksgiving. They do not give time lines for when these guys will go home as things change daily, so it is never even mentioned...I hope that another 3 1/2 weeks might get us there. All I can do is hope and pray. Won't you join me...
So... I made it home this weekend for the first time in nearly a month. I have not left Paxton's side since he was born. Let me tell you how freaking amazing it was to be home in my own beautiful, clean house, in my own big, comfy bed, in my super clean shower with my boys to snuggle up to! I have planned on going home since before the birth to spend Halloween with my boys and I was grateful that Paxton was stable enough to allow me to do so. We had so much fun together as a family in our own environment!
The boys had a blast on Halloween in our new neighborhood. There were kids everywhere, hay rides, a band and tons of candy (luckily the boys were to interested in all the people to care about the candy) They were both Thomas The Trains this year. I got the same costumes for them because they fight over everyyytthhinnggg!!!!!! So I get them the same thing at any given chance to avoid the ssscreeeccchhhinng the would ensue if they had something different from one another.
Here is Halloween 2008: (Cars and Nemo)
And here they are this year: (Man, they are the cutest kids ever!!!)
Have I mentioned how cute they are... I mean seriously, look at Austins conductor hat...He's got it on GQ sideways and it so works (ps-ya think he got his Daddy's eyes) Then there's Mason who is the biggest ham like his Daddy, eatin' up the camera!
Mason just enjoyed his freedom to run the streets without me yelling "stay out of the street!" every 3 seconds and Austin definitely got the idea of taking candy and putting it in his Thomas pouch. All in all it was a blast and by the way the boys were constantly asking to "go back to the party" on Sunday, they enjoyed their Halloween this year. I am so happy that I did not miss out on their fun. It made me feel so alive to see them so free and happy!
p.s I just have to send a shout out to our friend Jack. Actually he's Austin and Masons friend, but I just happen to think he is one of the sweetest, kindest kids I know. He faithfully reads our blog for updates on Paxton, wears his bracelet and had Paxton painted on his arm at the fundraiser instead of having his face painted. He is such a good kid and if my boys turn out to be as kind as Jack is, I will be one happy Mom. So, HI JACK, THANKS FOR READING OUR BLOG! WE CAN'T WAIT FOR YOU TO MEET PAXTON!!!!