Thursday, December 31, 2009

2009 Continued!

Austin says good bye to school for Summer
Lake house 2009 where there was very little sleep and lots of toes in the sand!


Austin pondering the moon at the lake
Our first family Disney cruise
Fourth Of July~ Boys were in awe of the fireworks
Annual Family Beach Week 2009. The boys absolutely loved spending their days in the sand and surf
 Summer proves to be lots of fun as we explore museums with "Morgans"
To my husbands chagrin we trade our navigator in for a Mommy mini
Mason starts school with his big brother Austin
 Austin turns 3 and Mason turns 2! Where did the time go...
Ready to pop and meet our little fighter!
Ma Ma turns 30 just days before giving birth!
Fundraiser thrown for our family to help with medical costs once Paxton was diagnosed with HLHS

Paxton David West enters the world with half a heart weighing 7 lbs 14 ounces
Precious, precious baby boy endures and survives open heart surgery at 4 days old
MaMa leaves Paxtons bed side for the first time since he was born to be home for trick or treating with the older two.
We get the news the night before Thanksgiving that Paxton is released from the hospital after two months. All two months of his life. By the grace of God he makes it home for what is the most blessed Thanksgiving ever!
Family Christmas picture 2009
Right where we belong as 2010 rolls in

Our family has changed ten fold in the span of a year.  SOOO many amazing things have happened. I am elated to see what 2010 has in store for us. I just know that while there still may be some struggles in our future, we will conquer them just as we have done this year. In no time flat, I am pretty positive I will be looking back on this post in awe of how far we have come yet again! 

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Tuesday, December 29, 2009

Let's Work On Some Milestones

As it turns out, Paxton is ready to begin doing regular baby things.  Like focusing on play and interaction with others (not that we don't do that already, but maybe others besides Mama).  Like working on getting him on a ahem...schedule.  We need to work on developing his head control and strengthening his neck muscles.  All of these things, I am ready to do. I am tired of focusing on the meds and the monitors, not that we won't still have to focus on those, but we can add some fun things in there too. Let's work on busting out the play mats and the bumbo chair from baby cribs

It's funny how you forget to do all of the typical baby things when you have a special needs child.  We have been so focused on right side line feeding, watching the clock until his next med dose, his saturations, his color etc. etc. etc. 
Today after our visit to St. Pete I realized he really is doing awesome. I have yet to see so much enthusiasm from his cardiologists (one of which literally hugged me on the way out, how often does that happen... I completely teared up). I am told he has been gaining an average of .58 grams per day and man was she psyched about this! I was concerned he may not be continuing to gain weight at the steady pace he has been, because he has not been eating by mouth at all much anymore. He used to take up to 4 ounces per feed and now if we get him to take 2 we are lucky.  The rest goes into his g-tube. Man am I glad we decided to go ahead with that surgery or he would be hospitalized for this lack of eating.  His doctor thinks he has developed an oral aversion to eating. In fact, she is surprised he hasn't already as this is very common with single ventricle babies.  We will begin speech therapy to work on getting him eating again.  Other thank that, she was happy with his weight, happy with his blood work, happy with how much stronger he is each time he sees them.  I was so elated to see how enthused she was with him.  I asked her what the plan was for his Glenn (the second surgery).  She said they really like to wait until they are 6 months old to think about it.  I was so happy to hear this because I really was worried they would want to do it sooner since he is gaining weight so well.  The only reason they would go in early is if he were outgrowing his shunt and as of now, his shunt is still to big so that is not likely going to happen!
Today was the first day, I did not pack my bag. You know the one doctors told me to always bring "just in case".  I was freaking terrified that I had jinxed myself by not bringing one, but I didn't need it. I really feel like it's ok to start enjoying being home. We have 3 more months to be together and I am ready to enjoy every moment of them instead of worrying them away!

Moments like this!


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Monday, December 28, 2009

Day To Day

To say the least I am a bit creeped out right now. I just went in, as I do every night numerous times, to check on my boys and see that they are snug as bugs in bed and yes... to see that they are breathing. I thought this habit would cease once they are older, but alas, it has not.  So, I went in for one last check before heading to bed (and to write this) and Austin opens his eyes from a dead sleep and tells me, "I want hammer." He says this numerous times so I proceed to cover him with the blanket and tell him to go back to sleep.  I will not lie, I had a moment there where I was waiting for him to turn all scary movie on me, so I scooted outta there and prayed he was just dreaming about the latest episode of Bob The Builder instead of the strange Chucky thoughts that fleeted through my mind there for a second. 

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So it turns out that life with a heart baby is like having a regular baby only insanely heightened.  As I mentioned above I continually check on my boys throughout the night to be sure they are safe and still breathing.  As for Paxton, I can only lay my head at night after doing a full body scan with a pen light so as not to wake him in the dark and try to ease the thoughts that can very easily overwhelm and scare me. What if something happens in the night. What if he stops breathing. What if his heart....it never ends. The worry that I carry around for my older two boys is deep, but the worry I have for Paxton and his half a heart is so very intense.  I try to take myself to a happy place, but man I love that boy so much and the very real possibility that something can happen to him at any given moment terrifies me.  He is such a miracle baby and such a fighter. I believe he will be ok. I believe he is here to teach this family many things, but the profound obsession I have with keeping him safe can be daunting.  I know that I can only do so much and Paxton's ultimate plan is not up to me. So, I allow myself to worry for this is a scary situation we are in, but I also remind myself to just be. To enjoy him, to have fun with him, to drown in that big smile that only Mama can bring out of him.  While I lose a lot of sleep and am growing many a new gray hairs over this boy I wouldn't trade it for anything. Our family has character. We are unique. We are special. We are a heart family and that means something.  Not a moment goes by that you don't realize the fragility of life. Somehow seeing what we have seen allows us to remember this at all times and I think that is the most amazing lesson I can take from all of this!  I am grateful for it.  I know in just a short time I will be thrust back into it, front row seat, as Paxton under goes his second open heart surgery. It's getting closer. I can feel it in my bones. As he continues to gain weight at lightening speed, I am feeling that change is eminent. It scares me for there are so many risks. It excites me for if all goes well, he will be so much stronger from it. I don't want to go back there and feel those feelings again. Just going for doctors visits brings it all back... I don't like it. Its a time in my life that I  felt more than I have ever felt in my life. From sheer terror, sadness, loneliness, love, longing and triumph.  The good, the bad and the ugly, but what I really want is to stay here in this beautiful life at home. Where mundane things like grocery shopping and running to pick up the boys or prescriptions are what fill up my days.  
As I spend day to day in worry over my ALL my boys. I am also learning how to let go and let come what may.  To let come what's going to come whether I fight it or not.  So instead, I try to stop the paralyzing fear and relish the moment.  It's a learning process. It takes practice and honestly it will probably never go away completely, but day to day, moment to moment I give thanks a million times over that we have what we have and that my boys are here.  They are able to wake me for 3 am feeds, touch squished worms in the driveway, fight over trucks, ask me for hugs, splash me at bath time, laugh at my funny voices, coo at my face, sleep on my chest, calm at my touch. 
Yes, day to day is so dang good!

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Saturday, December 26, 2009

It Doesn't Get Any Better Than This

We had a wonderful Christmas.  From packing up in the mini to go see all of the twinkling lights.

To opening presents Christmas morning and spending time with friends and family. The boys were enamoured with it all.  The parties, the presents, the company! The only dilemma was explaining to the boys that every day is not Christmas. They woke up this morning primed and ready for the next party.



Clearly Mason likes presents! Actually neither could contain themselves at the mere sight of shiny wrapping paper. It was really quite priceless to hear the screeches! 

I had to post this picture of Austin showing off his new "kicks" because the child has a passion for shoes like nobody I have ever known.  Why, I've no idea, but they appear to be some sort of comfort object to him...what do you think?


Every single night, he asks for his kicks before going to bed!  As I have mentioned before, I choose to pick my battles in life and if he finds his kicks comforting then kicks he can have.  

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This is the very first picture of me with all of my boys that I was able to capture. Not bad right?
I look at this picture and realize how amazingly blessed I am.  Three beautiful, intelligent, perfect boys! 

Life is good. Paxton continues to maintain here at home. While he went through a bout of refusing to eat, we seem to be on the upswing of that as of today! Phew! I was a nervous nelly and had only a handful of meltdowns worrying that we were on the verge of something not good.  As history shows, I doubted "P-Man" and he rose above whatever was ailing him. He continues to smile, coo and grow! I mean little man has a double chin now and just today I saw the beginnings of cheese forming on his thighs! 

I spent some time giving thanks and wondering where we will be next year at this time. I am blown away by the changes we have encountered in twelve months and am excited to see what this next year has in store for us for.

It really just doesn't get any better than this...
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Thursday, December 24, 2009

Merry Christmas To All


And To All A Good Night...



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Sunday, December 20, 2009

Christmas Chaos

So I mentioned that Austin didn't do so well at his Christmas play last week.  It was the first time he has ever been on stage. Upon entering the Sanctuary at his school where the play was being held, he was smiling from ear to ear for surely he thought he was headed to a party!  Austin loves parties and seeing all the people got him all excited.  That is until he saw me. "MOMMY" he screeched as he attempted to climb over a pew full of people.  From there, it was all downhill...

Here he is. Happy as a clam. 

And here he is after spotting me: (Priceless)

After an attempt at escaping yet again, he was in the teachers lap for the duration of the program where he stood staring at me without uttering a single lyric to the songs.  Leave it to Austin and his BFF Jackson to require restraint from the teacher during the entire show.  


Now we've really done it!


Somehow I just don't think things will change any next year either! Never put this boy in front of his Mama and tell him he can't go to her. It's like putting chocolate in front of my sister and saying don't touch = )


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As you all know Paxton turns very blue when he is cold. I have only attempted a real bath versus sponge once to which he turned a lovely smurfy color. Since then it's been all sponge baths. My husband is a wee bit jealous, I think.  That is until I found this chair to put in the big tub. It allows me to fill up the tub with water all around him to keep him warm. Instead of using those big plastic bins that never really get the water on them unless they can sit up.  I also got the grandiose idea of getting a space heater to keep in this bathroom to help warm the air while we are in there.  I was amazed to find that they have an entire aisle of them here in sunny, typically 80 to 90 degree southwest Florida.  Not sure the logic on this, but in any case I was psyched that I saved on shipping not having to order on online. Paxton takes his baths very seriously:


Dang, he looks like a WWF fighter in these pics! He's really a mere 12 pounds, but 12 pounds makes him a rock star!

I am not sure if the space heater that close to the tub is something my Mother wouldn't lecture me about = ) In fact, I will be counting the number of seconds it will take her to say something to me the first time she sees bath time!

How stinkin cute is he! I love snuggle time right after his bath. He smells so delicious that I just smother him in kisses!

Mama's boys!!! All 3 of them! Couldn't ask for anything more!

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Thursday, December 17, 2009

Real Life

As you can see, I have been on hiatus for awhile. Life is different now.  For one, I am the Mommy of a newborn and am up every three hours come rain or shine. While he would probably sleep a little longer, I have to wake him because it's imperative that he gain weight and since his heart beats at 140 beats per minute non stop, he must keep his caloric intake up. Which in turn, means there is very little shut eye for Mommy. I am exhausted, I won't lie.  My mind is in constant motion of what to do next, where to be next, who to care for next.  Some days I feel a little overwhelmed. Some days it's hard to fit it all in.  I wish I had a little more time with my older two boys. They miss me and I miss them.  I am going to try each week to have one on one time with each of them.  I hate that they are in school full time. I want them home with me, but it's just to much with Paxton and all of his needs right now.  It's a constant shuffle back and forth from one doctor to the other. It's keeping a constant eye on the clock to see when meds are due and of course a constant eye on his monitor.  I miss the freedom we once had. I guess I knew the time would come where I would mourn for the life we once had. Then I look at his face: (excuse the baby talk in the video, it's what makes him smile)


and I realize it's all going to be O.K. This is what is meant to be for our life.  This was in the plan all along and I would say that so far our family has handled it pretty darn well.  It all came as an enormous surprise.  He was then born before we could even wrap our head around it and four days later had open heart surgery. To say the least, this has all been a complete and total whirlwind.  My/our minds have been in constant motion for nearly 3 months now.  So, I guess it's to be expected that some days we will falter. This is, after all, real life.

I am pretty sure that this boy is in love with his Mommy. At least that's what my husband says. It's when I see his beautiful smile that I realize, yes, our life is different. It's full of medications, heart monitors, oxygen saturations, cardiac lingo, doctors visits, insurance battles and the likes.  It's exhausting to say the least, but most days I just pick him up and smell him or lay with him on my chest and I realize that I would do anything for this child.  A-N-Y-T-H-I-N-G! There may be some days filled with tears at the loss of what was once normal for us.  There's no up and leaving. No vacations in our future.  No jumping in the car without packing all of Paxton's things. No date night without constant worry in the back of our minds.  It's a lot to take on.  Yesterday was the first breakdown over this loss.  I went to Austins Christmas play (super cute pics of that coming soon) yesterday and it was the first time I had been to the school since leaving to have Paxton.  I saw a couple of moms that were pregnant with me and their babies were healthy and right there with them.  It struck a nerve I never anticipated.  I was sad because I wanted Paxton to be in his sling right there with me like the others, but he couldn't be because he's sick.  I was sad yesterday. Sad for all of the changes. Sad for all of the things our precious boy has endured and has yet to endure.  So I came home and climbed into bed with Paxton and we both fell asleep together.  It's the best medicine for me. I remind myself that I was put on this earth to be a Mommy and if it means with a special needs baby, I can do that too. If it means shuffling my time and losing some sleep, then that's what I will do.  Somehow, when I just don't think I can keep my eyes open any longer, for these guys I can do it!



My big boys with their BFF Jack. (Wait til you see the ruckus Jack and Austin caused at the Christmas play) So glad they have each other and so thankful to Jacks mom Eileen who continually lifts me up and reminds me it's ok.
Stay tuned for Christmas show drama and ultra cute Pax pics!
Also, I want to send a big HUGE congrats out to Asher. Paxton's heart brother who had serious complications during his second open heart surgery.  Things were insanely touch and go for awhile but by the grace of God it looks like he will be going home for the first time in his life on Monday. Just in time for Christmas! He spent 5 months, all five months of his life, at All Children's Hospital and fought for his life time and again.  If ever you doubted that God is good, may this remind you that he is.  CHRIST mas is coming!  Let's all take time to remember the reason for the season! Those of us who have lived what we have lived this year will always remember. These angel babies remind us on a daily basis!
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Tuesday, December 15, 2009

The Three Musketeers

Sooo, this weekend was my first Saturday alone with all three boys. We started out just fine, so good in fact, that I was prancing around thinking to myself " I got this..."  It just so happened that Paxton was sleeping and we were able to do crafts.



That was until Paxton woke up starving and needed my attention.  The boys decided they too were hungry and had to have a snack.  I was so distracted with getting the baby situated that I failed to realize that I left the jar of goldfish on the table and we wound up with this:


Hundreds of goldfish strewn about the table and floor!  Thank goodness for golden retrievers that never cease to be the hairy, slobbery version of my dyson.  From there it was all down hill. The kids turned this house upside down. Which in turn made me glad that I did not in fact get to the mounds of laundry we manage to accumulate, because they would have just pulled every last item out of the baskets.  Yes, it would all still be in baskets because pretty much our closets have become clothes folded in baskets.  



It's bad folks and the best part is there was a load in the dryer and one in the washer as I write this.  Where does it all come from and how do I get so far behind...Oh wait!



This little man keeps me on my toes. He loves his Mama and quite frankly wants to be held all day every day!  Those eyes, they win me over. His smile melts my heart and reminds me that it all can wait! For all to soon, all of my boys will be all grown up and I never want to wish I spent more time with them!





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Friday, December 11, 2009

A Holiday Makeover

Look! Look!  Look!  My friend Jennisa over at Once Upon A Blog gave ours a holiday facelift for me. I gave her free reign (yep, she's that good) because I have no brain power or time to help her design it, but wanted to spice things up for the holidays and it's just perfect. Thank you Jennisa. As always, I love it!!!


I am pretty sure I have mentioned a million times over how happy I am to be home, but this takes the cake. My boys belly laughing at me like I am the funniest woman in the world.  The sillier I act, the more they love it. It's loud, fun, happy and full of love!
The video was only after we had a dinner of McDonald's.  Daddy got them "specials" which is what they call things they aren't allowed to have often, i.e. McDonalds.  They had a chicken nuggets, some fries and apple dippers. Only they decided that the caramel sauce that comes with the apple dippers is suitable to dip everything in.


Yes, cause why wouldn't caramel fries be yummy..
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Course, I have to update on Mr. Paxton who has only had sponge baths due to his feeding tube. Well, I decided to give him his first bath. Overall, it went well and he seemed to enjoy it for the most part. What I didn't enjoy is that he turned blue from head to toe. This happens when he gets cold or cries due to his anatomy, but it makes enjoying the bath time hard for me. I don't like to see him blue and even with the warm wash cloths I had draped all over him, he was still so cold.  So, we won't be doing another bath like this one until I go get a little space heater to keep on while he is getting bathed.  In any case, he looked so freaking cute!!!

That is his feeding tube (g-tube) in case you were wondering

It even wore him out enough for a snuggly little nap.  

Apparently he still thinks he's squished in my belly and continues to keep his hand over his face like he did when in there.
Paxton weighs eleven pounds now which is fantastic for him! He has also learned very quickly that if he cries, Mommy will come get him. We can't let him cry for long because it's not good for his heart and this little two month old has definitely caught on! He will sleep snug as a bug in my arms and the moment I put him down, he's wide eyed and bushy tailed! Of course, I can't say that I mind!
Tomorrow, it's Mommy with all three of the boys alone while Daddy goes to work for the first time. That is, I will have them for the first time, not Daddy going to work for the first time. I won't lie, I am a nervous wreck...wish me luck and I will be sure to update after the weekend on how I did, that is if I still have my sanity.  = )

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