Wednesday, January 27, 2010

Remnants From Last Night



And every night hereafter indefinitely until doctors say Paxton's heart is well enough to not have to eat every three hours....


(Remember his resting heart rate is nearly 150 beats per minute so as he sleeps he is burning off weight at lightening speed. So eating is crucial to maintaining his plumpness and allowing for surgery number two to take place)

This is the couch at the end of my bed and every morning as sure as the sun rises you will see cushions full of dirty diapers, eaten bottles, empty medication syringes, burp clothes and yes even pukies to which I did not get to cleaning at 3 am. All of which is strewn about in my sleep deprived haze.  What I can say is that, no matter how exhausted I am, I always take those middle of the night feeds to gaze at my little man, rub his head and listen to the noises he makes as he gulps his "ba ba". I never take a moment for granted with him and have actually come to love holding him in the quietness of the early morning hours.  I have begun to have nightmares about his impending surgery. I am scared. I won't lie to you.  I loved Paxton the moment I knew he was in my belly. I loved him even more when I learned how sick he was and how hard he was fighting to be here with us.  I fell in love all over again watching him suffer through so much in the beginning of his life and today there are no words for the closeness I feel with this little boy that lights up when I walk in the room.  I am terrified of losing him.  I know that cannot be the focus and truly during my waking hours it is not. It's at night when things quiet down that I realize the fragility that is his life.  As well as he is doing, he does only have half a heart and that terrifies the living daylights out of me and as we prepare him for another surgery in a mere 60 days give or take, my heart trembles with the what if's.  

I find that I don't mind getting out of bed to get him when he wakes at 5:45.  I bring him to bed with me to listen to him coo, smile and talk.  I find I want to do that last feed at 11:30 pm when I could easily ask my husband (don't get me wrong, sometimes I do). I rush through my "me" time to get back home to him/them.  I love ALL of my babies beyond measure and there's just nothing I would rather be doing than spending time with them. In the midst of wild chaos, swearing I need a break, running on fumes moment I find when I am given that break, I simply want to turn around and come home. Is that weird? Maybe, but I have seen the other side.  I had to learn the fear that possibly not bringing home my baby holds and you never come back from that.  You never forget that life is so precious and no matter the chaos, that you wouldn't change it for the world because the alternative is just unthinkable.

So every morning I giggle as I walk past my couch full of remnants from last night because dangit, my baby is here and we had that time to share together! Isn't life so sweet...


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Tuesday, January 26, 2010

Sooo sick!


(Please pray that baby Paxton manages to miss catching this bug that's storming our house!)

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Saturday, January 23, 2010

Heavy Hearts

I mentioned a couple of posts back that I was on overload and had some things weighing heavy on my heart. It's taken awhile, but now I am ready to share.
My kids have been through more change in the past four months than any child should ever have to.  While kids are amazingly resilient, it is quite apparent the tole it has taken on them.  It saddens me and breaks my heart.  Mostly because I know in two months they will have to go through it all over again.  
Austin, our oldest, is just like me. Super sensitive and does not deal well with change.  While he seemed to keep it together while I was gone, it seems he is having some "rebound behavior" (a therapist friend I have been consulting informed me of this behavior) now that I am home and things are returning to normal. (Well... a different sort of normal for us now) He gets stressed pretty easily, cries and tantrums at the drop of a hat and will walk around even when I am right beside him and say "I want my Mom".  It's like he has said it so much it's become a habit and he doesn't even realize that he says it when I am in the same room.  He has been struggling in school, refuses to nap there and has become quite repetative as I mentioned above. 
Mason is more a mixture of my husband so while he is quite affected, he deals better than Austin. He does want to spend every second in my lap. His temper is rearing it's ugly head. He constantly fusses, whines and fake cries that he wants to "hold you".  I love that he wants to hold me all the time, but I am sad that he is so distraught. He screams bloody murder for me at nap time and WWF grips around my neck any time he is put to bed. He just doesn't want to let me go.   He can be distracted pretty easily at 2 1/2 still so that's helpful.

I am spending the greater part of my time together with the kids trying to calm overwhelmed children and I hate it!  I want normalcy for my boys. I want them to be free of the worries that seem to consume them lately.  My heart hurts for them. I want to fix it and am consulting each and every person I know on how to help them through this.  How to prepare them for my next departure. How to teach their teachers to soothe them when they are in the midst of a meltdown.  
We are going to put Austin back in speech therapy and begin occupational therapy with him. He has been known to have sensory issues. Doesn't like his hands dirty. Wears shoes on his feet nearly all the time because he doesn't like his feet on the floor and gets very upset if he spills on himself.  I spoke with an occupational therapist that sounds just amazing. She is ready and willing to work with Austin and is well aware of our situation and has many tools that we can put in place to help our boy learn to adjust and adapt to change. It's when I talk to positive people like this that I feel hope for the future.  I know that these tools that are put in place for Austin will be able to be used for Mason as well and hopefully we can help these boys through what is proving to be a tough time in their lives.  

I can't imagine trying to learn and navigate the big bad world with all the added stress of having the person you love and trust most coming and going.  Austin is picking up on WAY more than we realize.  While I hide all that I am feeling from him and am really doing quite well, he must be picking up the undertone of fear I am carrying about Paxtons next surgery. He constantly asks me "what's wrong Mom?" and I try and assure him that Mommy is great. He told his teacher the other day that she had a broken heart and started to cry. I am assuming somewhere along the way he has heard us talking about Paxtons heart and is trying to differentiate.  It's all of these little signs that creep up that show me we need to help these boys however we might be able.  We have structure in place. They spend all five weekdays doing the same thing every day. We started going to a playdate group on Thursdays with just Mommy and the older two. We spend the weekends together playing and frolicking about.  I spend every minute that I possibly can trying to reassure the boys that I am here for them. That I love them and that I am ok.  It's hard to wax and wane between the coddling that they clearly need right now to also being a disciplinarian when they lash out because I know why they are doing it, but I can't let it happen just the same.  It's a delicate balance.
We are all going through so many changes, with a lot more to come.  While life has seemingly returned to a new normal for us, it is apparent my being gone has affected my babies. It weighs very heavy on my heart. Knowing that just when they may possibly find some peace about the situation, I will have to leave again.  
I try to remember that our blessings are many and constantly remind myself that we are taking every action we can to help our boys through this period.  I try to find peace and hand it over to God. When I see them smile and laugh and hear them tell me they love me, I know they will be ok. We all have had our battles to fight in this life and as a Mom I wish I could take them all away from them, but I cannot and I try to find comfort in the fact that in the end this will bring us all closer!  Somehow, someway we will all forge on through this and I have to trust that God will carry ALL of my babies to the other side of this mountain...
  

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Tuesday, January 19, 2010

I'm Baaack!

Whew!  That was one heck of an illness. Flu like and strange. Knock on wood, none of the kids have gotten sick yet. I pray and pray they don't, especially Paxton for obvious reasons.  It really struck me while I was sick the lengths a Mom will go for her children. I seriously thought I might perish (dramatic, I know! I am known for that) at one point during this illness and yet I somehow mustered up the strength with a little help from my savior, M, yet again, to get up, get ready, pack up Paxton and drive all the way to Fort Myers for an RSV vaccine clinic that is only held once a month for high risk babies. I had no choice but to go and I did.  Saturday, I woke up in tears because I didn't understand why I wasn't getting better and once again I got myself ready (sorta...if throwing on a sweater and wrapping hair in a bun is what you call ready) packed up the older boys and took them to a birthday party. Outside of course so I didn't get any kids sick.  They had a freaking BLAST and it made me so glad that I mustered up the gumption from somewhere deep inside to bring them out to have a good time.  I am not writing this to toot my own horn, I just know that there was a time in my life when I wouldn't have moved for ANYONE when I was sick and the option is not even really there when it comes to my kids. I just love them soooo much and never want them to have to miss out on my account, although it wasn't really anything I could help. In any case, I think... I am on the mend after a full week of yuckies. No sleep and stress will do that to you, so I should have known it was coming. All I can say is this: MAN DOES IT FEEL GOOD TO FEEL GOOD AGAIN!
SO,  I have lots to catch up on which seems to be a trend in my life ; )
One. Yes I know that my blog is still holiday themed. I am working on that. My favorite blog designer is BUSY and I won't let anyone do it but her so I am waiting patiently in line for my turn. It's the very least I can do for all that she has done for me.
Two. Paxton is doing very well. We went to St. Pete yesterday for a check up with his cardiologist. To put it mildly, he's a rockstar! I mean every time we go, the doctor is more and more pleased. He  gained 1 pound in 2 1/2 weeks even with the bout of not eating.  
He continues to do amazing here at home. He coos and smiles non stop. LOVES LOVES LOVES his Mommy! My husband says he won't take his eyes off of me and he pretty much doesn't except when his brothers are hooting and hollering around him and really who wouldn't be distracted by them.  He hates tummy time unless of course he has a mirror in front of him to look at himself in. Course if I looked like him I would smile this big too!

Paxton is still learning head control. Gotta remember he spent the first two months of his life laying on his back and sides in a hospital bed. He didn't get many chances to work on his neck strength ya know cause he was to busy fighting for his life and all.  Fight he did though, and now we are trying to catch him up on all the "healthy" baby things he needs to work on. Since tummy time didn't go so well, we thought we would give this bumbo a shot that we got from baby cribs 
It allows him to see us instead of the floor when he's trying to hold his head up. I'm not sure if he likes it or not... you tell me!!!

As you can see, at 3 1/2 months old, he's still really working on that head control. In any case, this bumbo chair saved us in trying to get him to practice it. When you put him on the floor on a boppy, his head just hangs down to the ground and understandably he gets extremely upset. I would too if I was a centimeter away from the carpet with my nose. This little rubber chair, that gal darnit, why didn't I think of (coulda made millions...) has allowed him to go from this:


to this:


Look how upright he is! My strong boy!  It's pretty amazing a little blue rubber chair has helped him so much.  I recommend it for all babies, but especially for special needs little guys that are behind on the eight ball.  

Austin and Mason are doing well!  We have made some changes and have some things in motion for our little men.  I will post about that tomorrow since Paxton is working up to a full blown wail for Mommy to come pick him up right now!  Blog or Paxton...guess who wins = )

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Sunday, January 17, 2010

Who Knew

Long time, no see guys!  I have been sooo sick, but am better now. Before I got sick, I had big plans.  The plans were to help my sister, who has never gone over 5 miles run a half marathon. I had my mind set on doing this when I got sick so I prayed and pretty much begged God to get me better before the big day and he listened.  

 You may or may not know that running is in my blood.  While I didn't get the fast "gene" I did get the can go forever slowly gene = ). My dad has been a runner forever, ran in college and coached me all through high school. My freshman year of high school was when I decided to do my first half marathon. I did it and I did it with no walking. That's my Dad's rule. Run as slow and steady as you need to, but NO walking. So, since my sister is going to be a freshman in high school next year, she decided it was time she completed her first half.  The moment she told me that she was doing it, I started training so I could surprise her on the big day. Not nearly enough time to train properly, but I did get up to six miles. SOOO much of a half marathon is mental strength and I knew I could do it.  I knew that all we had been through these past few months made a half marathon seem easy as pie.  While it wasn't quite easy as pie, I did finish! My sister finished and we DID NOT WALK!  I am so proud of us! I have always said that running the half's are my proudest accomplishments in life after giving birth.  So I am proudly sharing our half marathon pics, while not very pretty, I am proud enough of us to share!  We DID IT!!! Great job Ash, I am so proud of you!!! 

BEFORE:

This was the shirt I wore the entire race and if ever I struggled, I would look down and remember all he has endured and I knew I could do it!

And we're off!

Ouch! Ouch! Ouch!

I think I can! I think I can!

( My sister Ashley)


And After!!! Not bad for having just run 13.1 miles!


Updates on Paxton and the boys coming soon! Lots of pics and catching up to do. So swing back by soon!


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Thursday, January 14, 2010

No Rest For The Weary

I really have so much to share. Beautiful pictures, fun times and heart wisdom.  HOWEVER, I am sick with something and it is kicking my "heiny".  Man, I have tried to fight it, but as the day has dragged on I am feeling worse and worse.  This means that I need to rest as much as possible.  So, don't give up on me. Keep on checking in cause I have lots to share and I will do so as soon as I am up and running again!

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Monday, January 11, 2010

Overload

There are some things weighing heavy on my heart right now. Things that I will share once I have a better handle on it.  I am just asking God to guide me in the right direction. When I wake to feed Paxton at 4 am, I am praying and asking for guidance. When I lay my head to rest at night, I pray and doze off mid prayer. I am hoping God understands my exhaustion.  These added worries are only making me more tired.  As a Mother, I will do whatever is needed for my children, but sometimes the starting point is the hardest place to find.  My heart walks around in these little children that my husband and I created, and it is powerful beyond words. I think back to all that we have endured this past year and I am confident that this too shall pass.  When I feel overwhelmed I stop, breathe and look around at all of the blessings bestowed upon us.  God never gives us more than we can handle and while some days I feel like a failure as a Mother. An gem of a friend told me this, "Jen, you are the most amazing Mother, I am not just saying that. God obviously agrees with me because he thinks you have the strength and love to handle those sweet boys". I tucked that statement away in my heart for days when I feel responsible for what I ultimately have no control over.  

One of my all time favorite quotes is this and lately I go back to it and remind myself how true it is.  
 
As a Mother my job is to take care of what is possible and trust God with the impossible.

I am hoping to be able to share yet again how the Wild Wild Wests will rise above another measly speed bump in the journey we call life.  

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Wednesday, January 6, 2010

I'm Just Sayin....

That I Love This Near Freezing Weather Here In Florida So I Can Bundle My Babies Up In Their Jackets And Beanies.  


All While Begging Them To Take Their Fingers Out Of Their Noses For Just One Picture
 Only To Wonder How They Can Make Picking Noses So Dang Cute
Making Them Late To School Just So I Could Stand Them In Front Of The Door To Take Endless Pictures In Their Winter Gear Cause Normally They Are Barefoot, Sweaty And Shirtless.


To Realize That I Have Three Of The Cutest Boys I Have Ever Seen. 
I'm Just Sayin...
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Tuesday, January 5, 2010

20,000th hit with life reminders!

Update: Contest closed! Melissa @ Mom of Four Monkeys was our 20,000th hit with picture proof! Congrats Melissa! Your flip is en route! For those who didn't know, as several have asked, there is a visitor counter on the lower right hand side of my bar.  Who knows what we might give away at 30,000 so keep stopping by = )

I just happened to scan my blog and see that we are almost at 20,000 hits!!!! Who knew when I started this blog that I would even have a single, solitary person read it (besides my sister and biggest fan of course). My intention was to make it a journal for my children and it has become so much more. Our first year has been made into a book for us and I cherish it more than you know.  Paxtons journey has made me even more grateful that I have chosen to blog.  When I look back and see his journey I am reminded of all the mountains he has and continues to climb!  As I continue this blog for our family, for Paxton as he hovers near his next open heart surgery, for me and for anyone who may find inspiration here I decided to nominate our 20,000th hit a winner!!!! Take a picture if you are the 20,000th hit and you'll win a flip
I must have picture proof as this prize was not given to me nor funded.  I chose this as the prize because I am obsessed with pictures, but this year I decided that I very much needed to start taking more video of my kids. I want to be able to hear those chipmunk voices when I am old and gray.   I am pretty positive most of my readers are mothers, grandmothers or are someone very much in love with family.  My dad got me the flip for Christmas and I use it non stop so I have decided to pass the fun along! Memories are priceless and whomever gets the 20,000th hit with photo proof can capture theirs too!
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I am pretty positive that I can sound ever so redundant at times when I write, but life sends me little reminders of where we have been and where we have yet to go.  For example, as I am scrolling through the contacts of my phone I pass CVICU and stop. Cardiovascular Intensive Care Unit. I remember the day that I added that contact to my phone just hours after Paxton was born.  I remember how many hundreds of times I called that contact to check on my boy. Every morning before I even stepped foot out of bed, (yes the phone was always right beside me armed and ready for the phone call that would stop my heart in the middle of the night) and every evening at around 10ish and 2 am when I would get up to pump.  If ever that contact came up on my phone as a call to me, my heart would freeze and panic would paralyze my body. I remember the first time one of the nurses called to tell me that Paxton was doing amazing. My husband had answered the phone and I could hear him from the other room, because I have super sonic Mommy hearing.  I heard him say "Yes, Sam." Of course, I knew that was Paxton's nurse for that shift because I always knew who his nurse was at any given time. With that I tore around the corner like a bat out of you know what, ripping the phone from my husbands innocent hands only it was to hear a good update. To which I breathlessly thanked her. From then on we were friends.  She was simply calling to tell me how awesome Paxton was doing. She knew I was home with my family for the weekend. She knew I was probably torn and worried and wanted me to know he was ok.  I hadn't ever received a good phone call. Typically the rule of thumb at All Children's is no news is good news.  I learned that day that it's the little things, when you cling to so little, for that simple phone call allowed me to enjoy the rest of the weekend. Just yesterday a friend of mine called wanting to know how to go back to the beginning of Paxton's story so she could tell a friend. Of course, that in turn led me back to the beginning of his story.  To which I would up reading this
Oh' those feelings.  All of those feelings. The uncertainty, the fear, the loneliness, the sadness and the hope. I just don't know if they will ever go away.  Just reading a post or seeing a contact on my phone can bring it all back in an instant and I know I only have roughly 3 months left before I am in the midst of it again.  As much as I dislike those feelings, I realize they are a gift. They really, really are.  I just don't take things for granted.  Do I have frustrating days when both toddlers are tantruming at the top of their lungs, absolutely! Do I recover faster than anyone you know, absolutely and that's because I have been given this gift.  I realize that the tantruming will pass and I remember what I would have given 3 months ago to be at home in the midst of one.  Forever and ever, I know how fragile life is. Forever and ever,  I know it could be taken away in an instant.  I like my little reminders.  I hope they continue to creep up in the most unexpected places on the most unexpected of days! 

My goals for 2010 are this:

To know that there is only a limited amount that I can do when it comes to Paxton and his health. His ultimate story is not up to me.  I have to remind myself of that when the control freak in me tries to take over.  

To get back to my pre baby weight. I know I know, isn't that what everyone says...lose weight. I just want to find time in the day to exercise for half an hour to get more toned. I know I am not overweight, I just want to tighten up a bit if you will = ) I mean really, one doesn't bounce back the way one once did after three pregnancies!

I want to make more time for my husband. I have a hard time at the end of the day when I am exhausted to stop and smell the roses with him.  I often find myself going back to one Sunday night in St. Pete when I dropped him off at the parking garage after spending the day in the hospital with Pax.  He got out to make the trip home while I stayed and my eyes were brimming with tears knowing we were moments from being separated again. I watched him walk away, smiling that happy smile and I sobbed right there in my rented car that I would never forget that moment.  He was strength, happiness and courage all in one as he walked away from his wife and newborn son to drive home by himself to take care of the rest of our family! He's my rock for better or for worse and I only hope I can be that to him.




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Saturday, January 2, 2010

West Family~2009

2009 starts with a bang as we prepare to move and try again at getting pregnant. Here are Austin and Mason in January 2009. The changes in just one year are amazing!

We say good bye to our old home and hello to our new one!


Ma Ma finds out she's pregnant! Happy Valentines Day Honey!
We finally take the plunge and break the boys of their paci's. They did better than we ever imagined!

We move Mason to his "big boy bed" although it takes some time for him to begin actually staying in it! Instead he chose the floor.



The boys first Easter egg hunt and they caught right on!
Our first trip to Sea World to see all of the "aminals"

Austin is potty trained F-I-N-A-L-L-Y
Dave's ahem...20th high school reunion

Continued on the next post...

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