Wednesday, October 28, 2009

Lots Of Updates

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 was saying all of this medical jargon about him that I could not understand. I let her know I was livid by doing what I do best... crying! Yep, I cried, there's a shocker. She said "I know this is scary, blah blah blah" was all I heard after that. The only thing I could focus on was the fact that some lady I didn't know was snuggled up with my son. I could handle vocal cords, our son had survived open heart surgery at 4 days old, we can deal with vocal cords. So it was decided there would be no feeding him by mouth until ENT came to check him and until he could get in for a swallow study on Monday. Then to top off Friday, Saturday night he was unable to maintain his oxygen, his feet had turned very blue and his blood levels came back yucky. So the nurse told us he would be receiving a blood transfusion and going back on i.v. meds. So, here was my thought process as of Saturday night at midnight, with the added knowledge and saddness that my husband and boys were headed home the next morning, that not only did he need blood, he was back on i.v.'s and not eating by mouth at all. There is NO way you can even head in the direction of going home if you are not eating, still on intravenous drugs and needing blood. I was devastated! I wanted and needed more than ever to feel that we were close to going home. I miss my life, my boys, my husband, my house. I was rock bottom as many of you read on Sunday.
Monday came and the ENT doctor came and checked him and said that there was no damage to his vocal cords. Woo hoo! We also found out that Paxton has a UTI and we think this is what may have thrown him over the edge this weekend. Something as simple as a UTI to us, can completely throw heart babies over the edge. It's to much for their bodies to take on anything else with all of the work their hearts do on a daily basis just to keep going, so throw an infection in there and it's over. We started him on antibiotics and his oxygen levels seem to have stabilized. I truly thought even on Monday, that he may have to go back on oxygen, but he seems to be stable as of this evening. Obviously if he's getting the oxygen he needs, his feet are no longer blue. (his feet turn blue first because the extremities are farthest from the heart, just fyi)
Yesterday, we went for his swallow study to see if he was aspirating when he's eating and he was. I got to go and watch the study, it was fascinating. They strapped him in a chair and fed him his milk with barium in it and watched via live x ray to see if the milk was going into his lungs. She would thicken the milk, change positions etc. to see what worked best for him. So today, speech came and helped me learn to feed him. He needs to be in right side line position (laying completely on his side, ear in line with chin, chin in line with hip) at all times during feeds to keep him "safe" from aspirating, he is on a super slow flow nipple and has to take breaks because feeding is exhausting to heart babies. Imagine trying to run and eat at the same time... not so much. Gone are the days are propping a bottle and walking away. Nope, I literally have to watch his every move to make sure he taking it ok and not turning blue. So, I did get the chance to feed my baby in my arms for the first time today. He is 3 weeks old and I am finally feeding him like a typical mom gets to every day. Well...except for trying to not accidentally pull the i.v. line going directly into his heart out while simply trying to burp him! I used to be such a confident Mom. I have been around babies and kids all of my life and I feel so awkward and clumsy now. I am sure I will get better the more I am able to do, but man I sure dislike this unsure feeling I have when caring for my son. He's my third, I should so be a pro at this, yet it's so different than anything I have ever had to do. I can't imagine if this were my first child...
Tomorrow or the next day we will begin to wean his i.v. meds, which I PRAY goes well this time. We cannot go home if he can't get off of them. Once he gets off of those meds, we can take the heart i.v. out and work on his feeds and think ( and I say think as a relative term) about heading home. Lord, please hear me when I beg of you to let us go home soon.
Paxton is doing amazing. He really is ahead of the game on so many levels. I try to focus on that and give thanks for it. I know this could have gone much, much worse than it has.
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I also want to take a moment and mention that our brave, strong boy has been nominated by a wonderful company whose owners have become dear friends of mine, as their recipient of the month. If you head over to their website who's link I have attached to the title of this post. Just click on Lots Of Updates and it will lead you to them, they will post his story on November 1st. Until then if you scroll down, it shows you a picture of Paxton announcing his nomination. I learned about Baby Be Blessed when we lost baby Tadem. So, once I learned that Paxton was sick and would be in the hospital for so long, I immediatly knew that I wanted one of their dolls for our son. When I went to their website in September, the website said they were overwhelmed with Christmas orders and that they could no longer accept any more orders until further notice. I was so bummed and knew that I really wanted one for our boy. So I emailed Laura and Tina explaining Paxtons situation and asked if I could pay extra to possibly have one made for him. To my surprise, the girls emailed me back saying that they would be happy to make Paxton one and that it was their gift to us. You will see on their website his "Lamby Bear" on top of his incubator in the picture. It has been with him since day one!!! The ladies at Baby Be Blessed really showed me what kindness was all about at the very beginning of this ordeal and as of a week ago reminded me yet again how many people are pulling for our son when they chose him for the recipient of the month.
All throughout this journey, I am reminded of the kindness that is still left in this world. I am reminded that I am not alone. That our son has so many prayers, love and support out there for him.
Thank you Baby Be Blessed for the love you have shown our son and a family you have never even met!
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I am headed home this weekend to spend Halloween trick or treating with the boys! It will be hard to leave, but oh my goodness it will be so amazing to be home again. Although, it struck me funny this morning when I realized I needed to pack a bag to go home. Doesn't make sense to me. ONE FINE DAY, I will be packing all of my stuff up to head home with our third born.
I will be sure to post pictures of the boys in their costumes! I will try to get some photos of Paxton eating, but since I am doing the feedings I don't get as many pictures, which is so ok by me, if it means I get to have that boy in my arms!




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Monday, October 26, 2009

Some Day...

Someday, hopefully, very soon...

We will all be together again as a family!




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Sunday, October 25, 2009

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

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 HUMAN, I felt guilty and selfish, but you know what, she is right. It's completely human to want my life back. It was an amazing life and it has been completely turned upside down in a mere month. I am angry. I want my life back. I want my son to be healthy. I want to hold him and not be afraid that I will accidentally pull the iv line going directly into his heart out! I want to lay in bed, just the five of us. I don't want his feet to be purple. I don't want to hear another alarm beep at me that something is out of the "normal" range. What the hell is normal anyway... Normal is being home with two screaming toddlers all day and texting my husband at 3 pm every day to see what his "ETA" (estimated time of arrival) is. I used to do that every day. I love when my husband is home and every day it became ritual to see when that would be. Normal is packing the kids up in the car and going to Whole Foods to get fruit for my "fruit a holics". Simple, silly little things that make up every body's days right now that don't even occur to them are things I crave to have back beyond reason. I want normalcy... and yet normal may not ever be ours again. We will have a new normal. A normal filled with "sat's" and "profusion" and meds and pulse ox monitors and blue feet and doctors appointments and doing this all over again in 5 months hoping we get home for those 5 months before that. I am angry. I am sad. I am emotional. I just had a baby. Did anybody know that? I very nearly forgot that I actually had a baby. I am so consumed with Paxtons well being and getting him healthy that I forgot that I just had him. It feels like I have been here an eternity when in reality I have not. I feel like my son and I are in ground hog day. I can feel the post partum emotions sweeping over me. The hot tears will not stop. I held my boys all weekend and swallowed lumps in my throat the entire time. I enjoyed every freaking minute of it, but that's not to say I wasn't highly emotional about it too. I want to be their Mommy again. It's hard. It sucks. They are tired from going to school full time. I am tired from the emotional wear and tear. Dave is tired from working his A*S off twenty four hours a day! Paxton is tired because his heart works as if he running a marathon twenty four seven. We are all tired. We want rest. We want peace. I want someone to tell me it's ok to be angry. It's ok to not be strong some days. I want someone to get it. I am not positive today. I am sad and angry. I know how blessed we are, I never lose sight of that, but it doesn't mean some days I can't pick myself up off the floor. It doesn't mean I don't get angry over the fight we are all fighting right now. My patience is thin. I am thin, I have to remind myself to eat and drink so that I can feed our son. After all, it is the ONLY thing I have any sort of control over right now. There is like nothing else in the world that I can do for anybody except sit at his bedside and talk to him and pump milk for him. I can't be anything to anybody else because I am here in this stupid town and it is stupid. People don't get it. I look at people and wonder what their story is. I wonder if people can tell that I have such a story going on right now. A woman opened her car door and slammed it into mine accidentally today at the hospital. I said nothing. I barely moved because maybe, just maybe, she is going through something like I am and I could see myself doing the same damn thing. Most people would have flipped out, but really is it important? It's a stupid car. I just wish the world could see what is really important. You want to cut in front of me in line, go for it. You want to leave the four way stop before me when it's my turn, do so. It's not important. It's just not important. What's important is getting through this one day at a time so that Paxton and I can get home to our family. I am not depressed. I am sad and angry. It always passes, but the longer we are here, the harder it gets. Life goes on, I know this and right now this is our life. So, now that I have shared with whomever chose to hang around long enough how I am really feeling today, I am going to pick myself up off this floor (and I am on the floor, it's somehow where I wind up, I don't know why) go pump some milk for my son and head to the hospital. I will lay my head beside his head, just as I did last night, I will probably cry and he will lay there cooing in his sleep. I will smell him and look at his beautiful face and ask God for some more strength for us because right now I am running low and apparently so is he.
I may fall down, but I always get back up.



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Friday, October 23, 2009

Ma Ma's Boy





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Thursday, October 22, 2009

Happy 2 Week Birthday Baby Boy

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 "pappy" that is so big it covers his whole face, adores his Mommy and very literally already has her wrapped around his finger. If I sing to him, he falls into a deep sleep, if I rub his head, he immediatly calms. If I walk away, he cries. If he cries, I do whatever he wants to soothe him. I am wrapped and our little "peanut" (his nickname given to him by his favorite nurse Susan) knows it!
He has been through more needles, pin pricks, scalpels, sutures and blood draws than most of us will endure in a lifetime. Nevermind, that he has to turn around and do it two more times. All of this in 14 days!
Happy, happy 2 week birthday to the strongest, bravest boy I have ever had the pleasure of knowing.
You are our fighter Paxton and man have you fought. We are so proud of you baby boy and we always will be!



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Wednesday, October 21, 2009

Got Ma Ma's Milk

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.




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Tuesday, October 20, 2009

He Did It

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 Paxton is here and he is going to teach us things. He is here to show us what strength truly is and while there still may be many, many setbacks on this journey that we have just begun, I must share with you all what a glorious day today is!

PAXTON IS OFF THE VENTILATOR!

Here he is before:


And here he is after:


It is a huge step forward and an enormous hurdle jumped! He then got his central line and urinary catheter out! I can tell he feels like a new man to have all of that tape off of his face, he isn't sure what to do with all of his spit yet, and it bubbles and falls out of his mouth, but Ma Ma suctions it out for him. He is so adorable to listen to when he tries to cry. He doesn't have his voice back after having the tube down his throat for 8 days and his itty bitty cry is raspy and hoarse, but most certainly music to my ears! So, long as he does well tonight we may start oral feeds either tomorrow or the next day. I pray that he remembers and wants to eat, because not eating is what keeps most HLHS babies in the hospital. He took his "pappy" (it's what the boys called their pacifiers and I have to keep the nickname) just after extubation and sucked on it so hard you could hear it across the room. He is also rooting ( cocking his head to the side, mouth open looking for food) so I am hoping this all means he is interested in eating!
I have to be honest, I sort of feel like I am in a dream. I feel blessed to have Paxton doing so well and sometimes I just sit in the CVICU and look to the left and to the right of Paxton and I and see babies who are on/or have been on life support all within the past week. I couldn't help but stare at his new neighbor who was only one day old beside him on life support and wonder how God makes his choices...I try not to go there often, but today was such a glorious day for us and a dreadful day for others. This is how life works, I suppose and I just try to focus on what IS. What IS, is that our son is doing amazing for the moment. Our son has exceeded all of our expectations, thus far, and we must find joy and peace in that. I am almost scared to be so happy, waiting for the ball to drop, but I am learning as I go in a situation as difficult as this. It's ok to be scared, it's ok to be cautious, but I must also celebrate when it's time to celebrate. I must let myself be joyous when there is joy to be had. Today is a day of celebration and joy. Our son has made huge strides in his 12 days here on Earth. I was walking to my car tonight thinking of my life just 4 weeks ago and how far we have already come as a family. I am grateful, proud and overwhelmed with gratitude for what we have been given.
HE DID IT!



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Sunday, October 18, 2009

My Boys

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 possibly could. I took turns holding them while they fell asleep in my arms. I bathed them, changed them, fed them and loved them. Ma Ma's boys through and through.

Then when I see them like this, I know that having each other will get them through these changes in their life right now. They love each other so much and it warms my heart to know they have one another.


My cup runneth over, as always. I can't wait until next weekend when I get to see them again. When we can run around on the beach together as a family and lay snuggled in bed feeling as if all is right in the world.

As I write about my time with the boys, it was equally as emotional and heartwarming to see my husband. I miss him, his smile, his positivity, his kisses, his arms. I know that going through something like this has the capacity to tear a relationship apart, but having been gone from him, I can see that if anything, this will make us stronger. It has truly made us realize how much we love each other, how lucky we are to be together, how we compliment each other and how lucky we are to be the family that we are. I can't wait to have him to snuggle up with in bed next weekend. I am so addicted to that man! To all of my men!

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Utterly Torn

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 very drastically in a matter of weeks. I hate how intensely torn I feel each and every minute of my life right now. It's a heavy burden. All of this is heavy! I want to wake up and realize it's all a bad dream and that Paxton's heart is whole and healthy, but I know that isn't going to happen. Life has other plans for us right now and I can't change that. Right now, when I am not positive and feeling down, I try to see down the road a ways and I can't... I can't see what lies ahead for us and it scares me. There are so many things that can go wrong and I am terrified. Terrified of time. How is there to much time some days and not enough on others... It's surreal. This process. I feel like I am an in a foggy dream and woke up this weekend and now I am back in a foggy dream. The only thing that makes me whole while I am gone from my family is looking into Paxton's eyes and singing to him, smelling him and telling him how proud I am of him. I wish I was as strong as he is. I wish this utterly helpless feeling that encompasses me twenty four hours a day would ease. I can't help any of my kids, I can't help my husband, I can't do anything from here. I can't... I just want to scoop him up and run away from all of this, but I can't and I won't. I will cry when I need to cry. Smell the boys blankets that they left in their wake. Cry some more. Pray a lot more and keep on keepin' on. It's what Mommy's do. It's what I do and while I may feel like I've hit rock bottom right now, I am smart enough to know that tomorrow is another day. I am clinging to that and the hope that in the end we will ALL make it through this and be together as a family again soon.

God grant me the serenity to accept the things I CANNOT change...




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Thursday, October 15, 2009

Happy Birthday Paxton

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!


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Wednesday, October 14, 2009

Blessings

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 relieve it. I am full of guilt and it sucks. I have been doing awesome and I knew the day would come when it all caught up with me. I just want it to be a lazy Sunday morning where we all pile into Mommy and Daddy's bed and watch a movie together. I want our life back and yet that is so far away and then I feel guilt for feeling sad. After all, Paxton is here and that is such a gift! I have never for a moment lost sight of that. I am just having one of those days and I suppose I am allowed every once in awhile. I suppose it's normal. We have had a lot of changes in our world in the past week. While we are doing amazingly well adjusting for the most part, there are some days that just overwhelm us. I know Monday was one of those days for Dave and today was my turn. I know we can do this and we will and I truly believe this will only make us ALL stronger. I have fallen in love all over again as I watch my husband try the best he knows how to keep it together, but is really a bowl full of mush over this newfound love for his son.
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Paxton is doing good. I was told this morning that "he is doing remarkably well" and while that made me so happy to hear I am guardedly optimistic. I know things with these babies can change in an instant so I am taking it as it comes. He has had very little swelling and only a handful of desats (drop in oxygen levels) that required a bit more intervention. This morning he went back under anesthesia to have his chest that was left open to allow for swelling, closed. He did well with that and has a pretty impressive battle wound to show for it. The picture below shows a little of his scar, I have ones that really show it, but I think this is good for now. Again, I am posting these pictures so that one day, our son can see how strong he is and how far he has come and so you all can see it as well. This child is such a fighter and we are so proud to call him our son!

He is very easily stimulated right now and is having a bit of trouble resting comfortably so they are keeping him a bit sedated to help him rest. They have also put the cover on his isolette to try and keep out a lot of the noise that is constant in the CVICU.

He is still hooked on the ventilator, he still has iv's, tubes and wires covering his body. They are going to maybe, possibly start to wean him off of the ventilator near the end of the week. Let's pray that goes as well as everything else has.
Paxton has acquired quite a fan club since he moved in. He likes to suck on his trach tube and the nurses love it. I have to admit it really is the cutest thing ever. His eyes are open quite a bit and he lets the nurses know when he is irritated with them. This morning he had 4 nurses surrounding him before surgery talking about how cute he was and all I could think of was how proud his Daddy would be if he could see his third son already surrounded by the ladies!
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My other two boys need an update too. Austin and Mason are doing well. They are asking for Mommy a lot as they can't really grasp what is happening and why I have fallen off the face of their earth. My heart aches for them so badly! I have never been away from them for this amount of time and it is killing me! I miss them with every ounce of my being. Dave will bring them up to see me on Friday and I canNOT wait! Apparently, the fire truck came to school today and l know that must have made their month. Anyone who knows my boys, knows their love for all things transportation runs very deep. Dave told me Austin wouldn't even take the fire hat he got from the firemen off at dinner. I can just picture him sitting at the dinner table with his hat on his head. My sweet, sweet boys! They have adjusted to full time school well, although a bit more tired. I am so proud of our boys for dealing with all of the changes made in their life. They are both Ma Ma's boys and I can imagine this has definitely hit them hard, but they are dealing with it "remarkably well" Must be a West thing!!!
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Change has hit our world head on. Last week at this time, I was still pregnant with Paxton in my belly for just a short while longer. Today, we sit on the other side of that with a beautiful son who has already endured one open heart surgery. In spite of the sadness that consumes me at times, I know we are blessed. We have 3 boys and they are here with us, in just one short week our family has grown yet again. It's amazing how life can change in a matter of seven days. How life can lift you up and remind you what is important. Through all of the tears and guilt, I know this. As I sat in the lobby today listening to a grown man tell his father that his daughter was going to die, I was reminded of our blessings and I will focus on those in the days and weeks ahead. May anyone reading this find their blessings and cherish them!


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Tuesday, October 13, 2009

Our Little Fighter

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 tubes and wires, but it was important to me that he hold him before his surgery as we are not able to hold him now for quite some time. I was very proud of Dave and once again Paxton did amazing and snuggled right up in Daddys arms and chest. Of course, I don't blame him, it's one of my favorite places to be too.

Feeding him was insanely scary as he tends to turn blue from all the work it requires to eat when only one side of your heart is working. He did good and LOVES Ma Ma's milk. It makes me so happy that I can do that for him and can truly say that I have never had my milk come in the way it has for Paxton. Even with all of the stress and lack of sleep, it continues to flow. I think because it is the only thing I can do for my son at this point. I feel like I am helping him by making sure he has plenty to eat when he is able.
Monday morning came all to quickly. I woke up at 3 am to pump and could not go back to sleep so I just got ready and headed to the hospital. The earlier I was there, the longer I was able to hold him before he went to surgery. I stopped in the chapel on the way to the CVICU and prayed with every ounce of my being. Then I went and held him for about 2 1/2 hours. When the time came to hand him over, my heart shattered. I was racked with fear. My body was literally paralyzed from head to toe that something could go wrong, that this may very well be the last time I see him alive. I know it's not the most positive outlook, but it's real life. It was a very real possibility and I lost it. I sobbed and cried and shook. I had ZERO control over what happened to my son back there and it was one of the hardest things I will ever do.
The 5 hours passed. I got updates about every hour and a half and each time the phone rang, my body froze. I didn't know what was going to be said on the other end, but each time he was ok. Finally they called and said he was off of bypass (where a machine takes over and does all the work his heart and lungs do) and he was finishing up. Relief. Complete and total relief. Suddenly a weight that covered my body all day was gone. The instant change was amazing. We had to wait about 2 hours to see him. They had to transfer him from surgery to the CVICU and let me tell you there was a lot to get situated and hooked up once he was there.
Eventually we were allowed to see him. Dave and I walked over together hand in hand to see our son who had survived his first open heart surgery at 4 days old. I lost it. I was prepared for all of the machinery, all of the lines, all of the tubes, what I was not prepared for was his color. Our son was so dusky and it made me realize just how closely he was clinging to life.

It's heart breaking, I know. He doesn't deserve this! I am posting these pictures so that one day he can look back and realize how amazing he is. So, YOU all can realize how amazing our son is. He is a fighter. He continues to fight for his life every single minutes and I am so proud of him. Dave is overflowing with pride for his son and it melts my heart. Paxton has taught us so much in his 5 days here on this earth.
We left the hospital and took a break. Went and showered and came back after dinner and Paxton had pinked up considerably. We spent some time talking to him and telling him how brave he was and how much we loved him. Then Dave went home to be with our other two boys and I went home to get some sleep. It's important that Paxton rest as much as possible so his body can heal. The first 24 to 48 hours are the most critical for him.
I called to check on him at 11 and at 2 before I went to bed and when I woke to pump and each time I prepared myself for some sort of news, but each time I was told he was doing great!!!! Again this morning when I called, I was told he had a great night. I went to go see him first thing and he looked beautiful. His color was good and he even opened his eyes for me! He is moving around a bit, although still intubated. He is sucking on his tube as if he wants to eat, but maybe that's wishful thinking on my part since I want him to take to eating so badly when he can. As I have mentioned before, eating is one of the hardest thing and the most common delay in going home for heart babies.
He has had a blood transfusion this morning. His body is having trouble making enough oxygenated blood on its own, but that is normal for HLHS babies even after surgery. His first transfusion did him wonders and I am hoping this one does as well. His chest is still open with the skin sutured over it. This is to allow for swelling post surgery and will be closed tomorrow if all goes well tonight. Dave was unable to look at it, and I will tell you, it is weird to see the heart so close to the surface. Obviously you can't see the actual heart since the skin is closed but you can see it pumping and working hard.
It's amazing what these doctors have done for our son so far. It's amazing how many medications, pumps, drips, breathing tubes and lines he has going on, in or around him. He handles it like a champ. As Dave has said from the get go, "he is a West!" and it's true, he is strong and tough like his Daddy!
I think of where we were this time last week and how far we have already come. How far our son has already come. He is already 1 day post Norwood Operation. How blessed we are to still have him here with us. To see him and smell him and to have his beautiful face to see each day.
I will continue to update on his progress. Each day is different. I never expect to much because these cases are so unpredictable. Prayers are still needed round the clock for our son, so if you have a moment, send one out for him please. He has come so far in such a short amount of time and I continue to drop to my knees in prayer that he stays on this path and we can bring him home to his waiting family! Thank you to everyone who has called, texted, prayed and loved our son! We have seen the power of prayer work. I felt the prayers all day yesterday as our son was down the hall on bypass. I feel them now and our family thanks you from the depths of our being.
The love we have for our son, for all of our children, knows no depths and no bounds. It fills us to the brim! Praise God that they are here with us!

(Side note: many of the pictures that you will see are very dark, we cannot use the flash often as it startles him)


(Pre-Op of course)

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Monday, October 12, 2009

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!


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Saturday, October 10, 2009

Our One Day Old Fighter

(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 skin) and honest to God the nurse said his vitals were the best they have ever been while he lay peacefully in my arms. All his vitals remained steady and he was the calmest he has been since he was in my belly. He knew his Ma Ma was holding him and he was so happy! It melted my heart, because I have been wondering if he remembers who I am when I talk to him since he was taken away so quickly and now I know that he does...

We spoke to his surgeon today and Paxton will more than likely have his first open heart surgery on Monday. His heart is bad and he has a couple of issues that make the doctors want to get in there now if they could, but they are giving his body a chance to acclimate to the world first and since he is stable, for now, they are going to try to hold off until Monday. I am scared and nervous. They did not hide anything from us. The risks, the percentages, the possible complications were thrown at us again and as he lay behind us in his isolette while the doctor was telling us all of this, I just wanted to scoop him up and run away. Since I cannot do that, we are learning to take it one minute at a time. The morning allowed me to hold him and bond with him and he even got to eat for the first time.
As I said, minute by minute. Yesterday we were told no holding or feeding until after his first surgery yesterday and today it all changed...for the better.

He ate his entire bottle of breast milk like a champ! Chugged every last drop and I was so proud!
He is fighting for his life and hasn't backed down for a second. This morning showed us how tough he is. With wires leading every which way and needles and catheters placed here and there, monitors beeping and alarms going off, he does what he needs to do to get through the hour. He's eating and going potty and all while he breathes at triple the rate that we do. All while he lays in a bed under a heat lamp, surrounded by plastic and equipment that I could never begin to make heads or tales of.
I stand next to him and tell him over and over how brave he is!
Paxton is my hero. He has taught me in two days lessons some people never learn in their whole lives.
His body continues to struggle, as of last night, after a perfect morning. I was headed back for some more Kangaroo care only to find out that his heart is just unable at this point to produce enough healthy oxygenated blood. Therefore, he would be getting a blood transfusion, the first of many I am told.
Minute by minute...
Things can change in a matter of moments and that is what happened. Dave was there showing him off and the nurse said that literally the minute he left, he had an episode and his blood gases dropped and a transfusion was now neccessary.
Whatever he needs is what we will do.
Then I called to check in before I tucked in for the night only to find out that he stablized enough that they held off on the transfusion.
Minute by minute...
I just wish I could take this all away for him. I wish I could do this for him. He is so amazing, perfect and beautiful. It just doesn't seem fair, but we know this is how it is and we continue to love on him as much as we can. We let him know we are here fighting right along side him and we let him know how brave we think he is. We tell him his brothers are waiting to meet him and that he has countless people pulling and praying for him. He had lots of visitors today. He got to meet his Grandpa, his Uncle Adam. Auntie Sha Sha and Me Me have been here and see his progress each day. Even a bunch of his "uncles" (Daddy's best friends) made the trip to show some love. He is loved beyond measure already and his Mommy and Daddy are so proud.

I will be discharged today and will try to update after our evening visit. Pray for a good second day of life for Paxton. Pray for an easy day with little complications. Pray for his rest and comfort. Pray for Monday. Pray that in the end, he will be home in our arms with big brothers running circles around us.



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Friday, October 9, 2009

Paxton David West

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 placed on a nasal cannula to help him breathe. When you look at him, he is very blue and this is because his heart is unable to pump the oxygen through the blood as it should. This is a little nerve wracking to me because I can't tell the difference between ok and not ok because he is consistently blue. I would imagine I will get used to this.
They tried to get an central i.v. multiple times to no avail. Then decided to go with a pic line, where the line goes from his leg and into his heart. This, too, was unsuccessful. So, they ended up doing a line through his umbilicus and into his heart. This is a tad more risky for infection, but was all they were able to get into him. Pray that no infection sets in...

He is on every machine and monitor known to man, with the exception of a breathing tube (as of our last visit at 10), he may need a breathing tube if he desats again. We are unable to hold him and will not be able to hold him until well after his surgery. He is not eating at all via mouth and this is due to the umbilical line. The option is not even there. I guess it can be risky and at this hour (4 am) I can't remember why. I am pumping for him after surgery and hopefully he will take to eating. I know that not eating is the number one reason these heart babies remain in the hospital post op and since he won't have even one feed before surgery, I hope he can pick it up after....
It has been decided that he will undergo his first open heart surgery on Monday at approximately 4 days old... I am scared and nervous.
I am also so in love. So proud of the brave, brave boy that is our son! He continues to fight the fight and my Mommy pride is brewing over. I cannot explain to you how precious he is. How perfect he is.
Having him in my arms for however long it was, was such a gift. He is a gift and we are so very, very blessed.
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Daddy is doing great. He is super tired, but is doing amazing! Watching your son get poked and prodded at only hours old, is such a tough thing to do, and I am so proud of him for the strength he has had and continues to have on this road we are traveling. He is ONE PROUD PA PA! Glowing from ear to ear!
I am doing ok. I am exhausted, but having a hard time sleeping. I had A LOT of post partum bleeding that required several medications to get under control. I finally seem to be on the upswing of that, but it was touch and go (and messy) for awhile there. I have been blessed with amazing nurses who are really helping me through this and for that I am so grateful!
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For now, I will post delivery pictures. He was born wailing and screaming and let me tell you, it was the most amazing sound in the world!





Many, many more to come, but for now I must rest. Please continue to PRAY FOR PAXTON. He has a rough week coming up with a lot of risks involved. Pray that he makes it through like the champ that he is!
Thank you to everyone for their prayers and positive thoughts! We are blessed to have so many people behind us on this journey. We hope you will all stay along for the ride!
I will update after we see him a little later!


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