Showing posts from April, 2010

My Wish

I have for whatever reason been reminded the last few days just how far I have come in this life.  It started yesterday as I was driving around, alone which is rare, and had my i phone blaring it's downloaded songs. We all know I have a love of all things rap and r&b.  It's always been there. I find it quite impressive how the singer can get the lyrics to flow like they do and I always find the beat to be somewhat electric, it makes me smile and start to dance.  I also love, love, love country music. Odd combo, I know.  However, country music has been pushed to the wayside since we had the miscarriage and lost Tadem.  
He, by the way, would have been one year old on April 21st... And I bet his birthday was far more amazing in heaven than anything I could ever have given him here...
I haven't been able to hear more than the first line of any country song without immediately switching the station because the tears instantly well. Country music strikes something within me.  …

When You're At The End Of Your Rope

Tie A Knot And Hang On!
Whew. It is good to be home, but to say it's been easy would be a lie. Paxton has a lot going on right now.  He isn't sleeping. At All.  He is up every hour and a half to two hours.  I am guessing he is adjusting to the new blood flow from his surgery. Probably still has headaches from this and given that he is still scratching his head I am guessing it hurts. He also has one of his upper front teeth coming in. To top all of this off he is sick with a cold and the amount of snot this child is producing would win medals.  I can't pick him up under his arms for six weeks as his ribs are still healing and are only held by wires, this is difficult since we all know a good Mom whips her kids onto those birthing hips from where else but under the arms.  He can't go in his jumper, which he loves because I don't know how to get him out except by picking him up from under his arms.  Poor little man is probably a little bored to say the least and Mommy…

We're Home

I haven't posted in a couple of days because Paxton and I are home and the only thing I want to do right now is lay on the floor and let the boys romp all over me.  I am in heaven here at home with the loves of my life.  I have so much to talk about. I have so many things on my mind, but come days end I am beyond exhausted. I am definitely not caught up from the broken sleep of last week in the hospital.  Paxton is doing well, although a little irritable which I am attributing to the "Glenn headaches", he's happy as a clam to be here at home.  I will check back in this weekend with pictures of my loves and to share some thoughts filling my heart and mind since our return.  Until then I leave you with this picture of my angel, my fighter, my rock star, my heart.

Our Little Man's Second Journey


Really Though...How Does He Choose

Today has been an emotional day for me.  It's like I held it together all week and now as my son's second open heart surgery journey comes to a close, my emotions took over. It's pretty cool how Mama's can keep it together when they really, really need to only to lose it when things are all said and done.  As always in hospitals, you meet so many people. Some doing better than you and some doing much worse.  If I had a dollar for every time one of the nurses, doctors or parent/family member of another child said how Paxton looks so amazing we would be rich. For being a single ventricle baby, Paxton really and truly has made this all look like a cake walk.
From the moment I found out how sick he was, I prepared myself for the absolute worst and anything better than would just be a blessing. I have waited his entire six months and even still wait for the ball to drop.  How. How? Is it that my baby boy is doing so well when so many others are struggling, have struggled or…

Were Movin On Down!

Step down unit here Paxton comes! Oh yah!  He's got it like that!
We are being moved over to the step down unit later today.  In a mere 3 days Paxton has gone from this:
To this:

A work of God, my little man is.  Truly and honestly, he blows my mind. Some would say why are you posting a picture of him in that condition. I say because no body can grasp all that he has been through unless you are in the thick of it.  This picture takes my breath away. He is six months old and this is the second time he has gone through this. I post this picture because my dear friends if you think you are having a bad day. Look at this baby.  If you think you've got it bad, look at this baby. Then look at how he has recovered in 3 days. My son, could teach the entire world a lot about happiness, fight and spirit!  He has every reason to be a cranky baby and yet look at him.  He teaches me every day to remember what is important.  There isn't a whole lot he gets upset about. It's like at 6 …

Right Where We Belong

What a sweet, sweet day!

My Hero

Yesterday after surgery we were able to finally see Paxton around 2 pm.  He was still out from anesthesia so we stayed a few minutes then went to go grab some lunch. By the time we returned he was a mess. Lots of crying, moaning and irritability, not so much from pain as he was on so many pain meds I'm not sure pain was possible, but more from the effects of a LOT of morphine and versed. I think he was a little freaked out by how it made him feel.  He was also experiencing what they call a "Glenn Headache" (the bi directional glenn is the name of his surgery) and the headache is caused by the repair the surgeon made to his heart to allow more bloodflow in the upper part of his body instead of the lower.  The blood now drains from his head into his lungs and sends oxygenated blood to his heart.  The headache was intense and that paired with the amount of drugs he is on just really threw him over the edge.

 The nurses suggested I go home and rest for the night while he was …

Surgery Updates

UPDATE: 12:20 pm-- Paxton is OUT of surgery! 4 Hours! Very routine procedure. His surgeon is very happy with how things went. They are setting him up in the PCICU and we will be able to join him in about half an hour. PRAISE GOD!!!!!
UPDATE: 11:00 am--The surgeon is now through all of the scar tissue. Paxton is on bypass and they are working on the heart repair now. Please pray! Our little man is so amazingly tough and strong! I just want to see his beautiful face! The wait should be considered a form of torture in my opinion!
UPDATE: 9:15 am--The nurse just came out and said that his iv lines and central lines are placed and his surgeon is beginning to cut through his scar tissue. Will update when he hear more!
7:43 am--They have taken Paxton back to begin surgery. Now is the time to pray my friends! I will update when we hear word of anything!

Our Little Rockstar

We spent four hours in pre op today. Ekg's, blood tests, chest x rays and the likes.  It seemed to go on forever yet our baby boy handled it like well... a rockstar! He has every reason in the world to be a cranky, crabby baby only he is the complete opposite. He smiled, talked and flirted.  He continues to show us what happy truly means.
We met with his surgeons assistant because his actual surgeon was in an emergency.  We get that.  I spoke to him on the phone tonight at length about plans for tomorrow.  There were some big concerns about moving forward because they forgot to tell me to discontinue his aspirin when they called to confirm his appointment. Aspirin thins the blood and he is being cut open tomorrow. I was beyond livid. In fact, I don't think my husband has ever seen me so mad. I just couldn't believe such a critical thing was forgotten. We have uprooted our lives in preparation for this.  In any case, after talking with his surgeon (whom we love) for some ti…

Were Here

This weekends mission was a hard one. I had to pack what I thought was necessary for Paxton and myself for however long we may be here.  I don't really have access to a washer so I packed a lot.  I had to prepare the house for my departure.  I had to prep everything for my older two boys. Get groceries, pay bills and the list goes on.  When you are preparing to leave your family and watch your child endure his second open heart surgery, the last thing you can even concentrate on is bills and food.  In any case, I did what I had to do. Slowly no doubt, but it got done. I spent the greater part of the weekend waxing and waning through the sobs.  I would look at the two most amazing, kind big brothers of Paxtons and the tears would simply fall.  I just love them so much and leaving them without them really understanding why I will be gone for so long kills me.  Again, I did what I had to do and climbed in the car, cried the ugly cry and then I put on my big girl pants and focused. I …

Easter 2010

Lots of things have been going on here at the West house.  Easter was so much fun with two little boys who have clearly begun to understand holidays and what special treats might be in for them.  It melted my heart to hear their fat feet slapping the tile as they searched the house still groggy from sleep for the Easter baskets that were left for them.  

Watching the joy on their faces as they searched the yard for hidden Easter eggs with their friends. Running as fast as could they could to get them all. Sometimes stopping to crack one open for a jelly bean or two.  Or realizing that Mason dove into a chocolate easter egg so quickly he forgot to take the foil wrapper off (cringe...) Oh to be an innocent child again where counting candies was the mission for the day.
We gathered for family pictures, the likes of Paxtons next surgery looming before us made me feel an intense need to get us all together.  The mission was a tough one, trying to get 5 sets of eyes staring at the camera all …
It is early morning.  As exhausted as I am, as much as I know I should be sleeping, I can't.  My mind just will not shut down. Paxton is now sleeping with me in our bed instead of his cradle and I find myself just staring at him. I kiss him constantly and he shuffles and sighs in his sleep when I do. I am hoping if I just come to this dang computer that has been here for me from the day we found out he was sick and let it all out then maybe my mind will rest. I am terrified. I know this isn't the worst of the three surgeries, but it is still open heart surgery. I know recovery is said to be quicker, but I cannot stop the what if's. Paxton has me wrapped around his little finger like no other.  I can't explain the dependency that is there when you have a sick child. I can't explain how not knowing if we would ever see him be born makes you never take a moment for granted. How knowing that one day at a time is all you really have. I am told he will be significantly s…