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Showing posts from October, 2009

Lots Of Updates

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Paxton, as many of you know, had a rough weekend. That is part of the reason my Sunday post was so "angry". While my husband was here on Saturday with the boys, we got the call at midnight that Paxton had taken a turn. When the phone rang at that hour, I literally froze. I had just been there at 9, how could he have changed so quickly, but I am learning that is totally possible with these babies at any given time. Friday the speech therapist came to see why he was so "noisy" when he eats as we all felt there was the possibility he was aspirating his food. Not only did she tell me she really felt there might be damage to his vocal cords during surgery (because the vocal cords are right next to his aorta that they worked on), but I came into his room after leaving for 15 minutes to pump, to see this strange woman holding and feeding my son, when I had yet to be given the chance. I was livid. I am his Mommy and I should have been the first one to hold him and she wa…
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Some Day...

Someday, hopefully, very soon...

We will all be together again as a family!




Stupid (It's my word today, let me have it)

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Whatever happened to "easy like Sunday mornings..." Not in our world. Today is Sunday and it has only become a day of dread for me. My boys just left. My Mommy mini van pulled out with my entire family in it while I stood on some stupid sidewalk in some stupid town that I don't even know. Today, I will warn you, I am angry. I am alone in this stupid condo with toys spread about reminding me that the loves of my life were just here and now they are gone and I am here for who knows how long. I am angry. If you don't want to read about it, which I completely understand, then click on your favorites and move along because today I am angry and since I am alone and have no one to hang it all out with except my computer I am writing. Man have this computer and I gotten close lately. It's a wonder it still types with all tears that have dropped in the keys. Today, I want my life back and until I was reminded by a gem of a friend that feeling this way is only HUM…

Ma Ma's Boy

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Happy 2 Week Birthday Baby Boy

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Born October 8th, 2009 at 1:38 pm weighing 7 pounds 14 ounces and 22 inches long.

First open heart surgery on October 12th at 4 days old lasting 5 hours.

Went back under anesthesia 2 days later on October 14th to have chest, that was left open to allow for swelling, closed.
Spent the next 8 days on a ventilator. Fighting for his life and slowly healing one day at a time.

On October 20th Paxton was well enough to have his ventilator taken out! A very BIG hurdle jumped! A very glorious day!

October 21st he tries to eat again. This will take some time and practice.

He loves his "pappy" and has from day one.

Today, October 22nd, Paxton is moved to a private room!

And removed of all oxygen helping him breathe. Paxton breathes room air on his own and the only tube left on his face is his n-g (feeding) tube.

He weighs 7 1/2 pounds, has his Daddy's eyes, loves to be swaddled snug as a bug, cannot stand to have a dirty diaper and he will let the world know if he has one, loves his "…

Got Ma Ma's Milk

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Yummy, yummy, yummy he's got milk in his tummy!

And again...

He is still learning to get his swallow reflex to work so a lot the milk falls out, but give him a little time and practice and this hungry boy will have eating down pat! Another hurdle, very nearly jumped! We just have to make sure he eats enough to sustain him. These babies hearts work so hard that they burn their food off very quickly, so it's super important that they keep their caloric intake HIGH! If he cannot take in enough on his own, then he will keep his feeding tube, where we will give him what food he doesn't take through that. Only time will tell...
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Last but not least, because he is my main man right now.




He Did It

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I spent last night fretting, hoping and praying that Paxton would tolerate the aggressive approach doctors took all day yesterday in hopes of extubating him today and getting him off the ventilator that has been helping him for the last 8 days of his life. I am and have been prepared for setbacks, for bad news, for worst case scenario. Some may say this is a negative attitude, I like to call it cautious. I was given every worst case scenario for my son from the moment we found out he was sick. I prepared myself for those and knew that anything better than that was a gift. I have sobbed for him, laid on the floor in a puddle of angry tears wishing things were different for him. I have screamed how unfair this is, sobbed on my husbands chest for endless amounts of time. Wiped his tears just as he has wiped mine. I have begged and bargained with God to help our son. Yet, when I walk outside and feel the cool air hit my face and the sun shine warm on my body, I am reminded that Paxt…

My Boys

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This weekend was the first weekend my boys came to see me here in St. Pete. I missed them so terribly much and to see them, smell them and hear their little chipmunk voices made me feel alive again. They are my whole world and to have them in my arms again was the most amazing feeling. I felt like Mommy again. Even though I am here being Mommy to Paxton, there are not many "Mommy" things I can do for him so it felt nice to be able to get back into my roll again, because as everybody knows the things that matter most to me in the world are my family and being a Mommy.
We rented a condo on the beach for me to stay at while I am here for however long and boy am I glad that we did. The boys LOVE, LOVE, LOVE the beach and we had to literally drag them off of it. It was soooo cold out there, but it didn't phase them one bit. It was so wonderful to see them so happy and free out their on the water throwing "rocks" and chasing birds!!!



I soaked them in as much as I …

Utterly Torn

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So everyone says I am so strong and right now I feel everything but that. I am going to write this post, because what we are going through as a family right now is real life and it sucks and this is my outlet so I am going to let it all hang out. Tonight I will post on our amazing weekend as a family, but for right now I need to cry the ugly cry and know it's ok to do so.
The boys just left. This condo that I am staying in was dirty and messy and filled with love, laughter and screams just hours ago and now it's empty and I am alone. I hate it! I hate this! I hate that my son's heart is so sick and he can't seem to settle down right now! I hate that I can't pick him up and make it all better for him. I hate that my family is ripped apart right. I hate that I am not there when my other two children call out for me. I hate that they are sick with colds and I am texting care givers on how to care for them when it should be me. I hate that my life has changed so ver…

Happy Birthday Paxton

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Happy One Week Birthday Sweet Boy!

Mommy and Daddy are so very, very proud of how far you have come in a mere seven days! You were born with only one side of your heart working and made it through one open heart surgery at four days old! You are a fighter Paxton David and we are so honored to be your Mommy and Daddy!


Blessings

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For all of you Mothers out there, you know what I mean when I say the words "Mommy Guilt"
Well, that's what I am full of today. I am full of guilt every time I walk out of the CVICU and take even a moment to myself. I am full of guilt that I am not around to help my husband and relieve just an ounce of the burden he is carrying around each day now. I am full of guilt that I cannot be home with my two other children who are to young to understand where I have gone. I am full of guilt because the real world doesn't see "our world" and each time I am out in public, the only place I want to be is at my baby's bedside. I am full of guilt because I can't return phone calls to people who are just reaching out. I am full of guilt because I have things I need to do, but the thought of doing them makes me cry, because they seem so trivial now. I am full of guilt when I see my son scrunch his face up as if he were in pain and there is nothing I can do to reli…

Our Little Fighter

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I don't know any other title to give this post. In fact, I may continue to give it to every post in the future. It's the only word that comes to mind when I think of our son.
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I was released from the hospital on Saturday and spent the greater part of Sunday at our sons bedside. For Monday, would surely be one of the hardest days of my life. He was due to have his first open heart surgery and he did. Sunday was uneventful for the most part, Paxton remained stable throughout the day and Sunday night I sat with him doing Kangaroo Care (skin to skin contact, like a kangaroo in it's mothers pouch) and even fed him for the first time. He laid in my arms sound asleep and peaceful until I couldn't keep my eyes open anymore. Each time I hold him, the nurses say his vitals are as stable as they have ever been. It makes me so happy that he knows I am there and that he finds comfort in me.

I was also able to get Dave to hold him. He was a little leery of all the tube…

Update

I just wanted to touch base and let everyone know that our baby boy made it through his first 5 hour long open heart surgery! It was one of the hardest days of my life, but we all made it! I want to write all the details and share some pictures of our amazing fighter, but right now I have to sleep. The stress and lack of sleep is really taking a toll on my body. I mean I did just have a baby 4 days ago. I haven't been taking care of myself like I should because I could only focus on my son, but before I get sick I have to rest. Tomorrow I will update with all of the details and share some pictures. In the meantime, I thank you all for your prayers and ask you to continue to pray for our boy since the first 24 to 48 hours are the most critical! Hallelujah, he made it! I am so proud of our little fighter!


Our One Day Old Fighter

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(I am updating in the early mornings, so by date, he is two days old, but because I can't stay awake at the end of these long days, I update once I have had some rest in the wee hours of the next morning)

Paxton is one day old...

and is fighting so hard.
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His first day with us started out as a good one. The first report of the morning showed that he remained off of a breathing tube for the night. YAY! He remained pretty stable through the night with some de sats that continue to be monitored. While his color has improved a bit, there is little blood flow getting to his extremities. His arms, legs and feet are cold he must be kept warm at all times.

We are learning very quickly how things are minute by minute with a heart baby. One minute he is fine and the next all plans have changed.

I say that because this morning, I was given the best gift, that I was told would not happen for weeks...

I got to hold my baby boy for at least fifteen minutes. We did kangaroo care (skin to ski…

Paxton David West

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We announce with overwhelming pride and joy the birth of our third son, Paxton David West



Born October 8, 2009 at 1:38 PM
Weighing 7lbs. 14 ounces


He has strawberry blonde hair like his big brother Austin. Ma Ma's ever so large mouth and big lips. Masons nose and cheeks or I guess you could say Daddy's because that's where they get it from.
He is amazingly perfect!
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Just after delivery, which spanned 4.5 hours, and ahem...an epidural that did not take, I was able to hold my precious baby boy for a good amount of time. They allowed skin to skin contact and time to give kisses and pep talks before packing him up in his incubator for the ride via tunnel next door to All Children's Hospital. Daddy got to go with him and be by his side.
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What we know as of now:

Paxton is obviously in the cardiovascular intensive care unit. He started out on breathing room air only, but had a desat (drop in oxygen level causing his heart rate to plummet) so he was p…