Monday, November 30, 2009

Have I Mentioned...

Today was a very long day for Paxton and I, but so worth it in the end.  We made the journey to St. Pete for his first round of rechecks since he was released from the hospital on Wednesday.  He had to see his cardiologist, get xrays, echocardiograms and ekgs. All of which came back great for his anatomy.  We were allowed to bring him home again which was such a relief since I was told on Wednesday to always bring a bag for these recheck appointments "just in case".  I was nervous to say the least, because I know how fragile HLHS babies are in the time between their Norwood and Glenn surgeries.  I have to say I spent the greater part of last night waxing and waning between the pure joy of being home and the gripping fear of possibly not returning tonight.   I packed my bag with tears streaming my face, hoping and praying that we would get to come home. I doubted the little fighter that is my son and I should know better for he has time and again surprised us all in how he has handled each step that has been thrown at him. Whether it be open heart surgery at 4 days old, the closing of his chest a week later, an infection, g tube surgery, feeding, endless blood work, iv's or making the transition from hospital to home, he continues to prove how tough he is.  Today was no different for he handled the two hour drive to St. Pete quite well. We stopped to feed once and pulled over on the side of the road to replace a lost paci. Road rangers rolled up on us and when I told them that we were pulled over because our little guy has a heart condition and is not allowed to cry for long, he proceeded to follow us the entire way to All Children's Hospital so that should I need to pull over again, he would be right behind to put his lights on to keep us safe. Such a kind man!  The ride home he slept the entire way. I think he wore himself out crying at our last appointment of the day, which was an unexpected trip to his GI doctor to have his feeding tube checked. I noticed last night that it looked infected and immediately blamed myself for not cleaning it well enough. I made an after hours call to get him in today, knowing we would be there already. So, we headed another half hour north of St. Pete to Tampa where the doctor did indeed confirm it was infected. He praised me for noticing and told me that it was not in fact my fault, but that the tube was on to tight which didn't allow air to breathe and circulate causing bacteria to grow.  So he scrubbed it (poor little Paxton turn a bright shade of blue during this from crying so hard) and replaced the cover on the tube with one that will allow it to breathe better. Once again being braver and enduring more than most of us can imagine!

I sit here in my big comfy chair late tonight, having showered in my own shower, with my baby boy here beside me. I just went in and kissed my other two boys good night and let them know that Mama was home (Austin freaked out when Daddy picked him up today, because he wanted Mommy to pick him up, once again they thought I was leaving them) I am going to rest my head in my own bed tonight with my husband beside me.  We are home!  He did it!  
Have I mentioned how amazing our son is!  Have I mentioned just how strong he is!  Have I mentioned how proud I am of him for continuing to fight for each day here with us.  He is so gorgeous and happy. He smiles, takes in all of his surroundings and to date watching ceiling fans is his favorite hobby! 

As for the boys meeting their baby brother. They did really well!  Mason really doesn't care all that much.  He's more interested in having his Mommy home, but Austin is so excited.  "Baby" "Baby" he says. He goes up to him and pats him and "shh's" him. He will try to give him his paci and wants to hold him. It melts my heart to pieces.

I wish I could say that I have some pictures of Mason with his brother, but he is definitely our rough neck, so while he isn't that interested, we also don't push the issue! I knew Austin would do great with him. He is going through the wanting to be a baby phase, but we let him, knowing it's normal. We have all been through a lot of change these past couple of months. We have all had our rough days and we have all come out on the other side of it stronger and closer. When the boys walk up to me out of the blue for a kiss or snuggle, I know they too have learned from this experience.   
I can't even tell you all how excited I am to see these boys grow up together.  We are so blessed. Three beautiful, perfect boys to love! 
Have I mentioned how good life is!

PS- I have had a lot of people trying to touch base with me lately, whether by phone, facebook or text. Please forgive me for not getting back in a timely manner. I have been adjusting to life at home with two toddlers and a special needs baby. I have been relishing every moment with my family.  I promise I will get back to you all at some point and hope you can understand in the mean time. This has been a long time coming and right now it's all about my boys = )
ALL of my boys!

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Saturday, November 28, 2009


I mentioned in my last post to stay tuned... and I mentioned that because we have big news to announce!

Paxton was released from the CVICU on Wednesday evening, the day before Thanksgiving!

My goal since I found out Paxton was sick and that he would need surgery was to have him home in time for Thanksgiving.  When we got to the week before the holiday and no word about home had been mentioned to me after two months, I bumped my goal back to Christmas. Only I got the call on Monday that they were considering letting him go home in 2 days. I roomed in with him to prove that I could do ALL of his care without the help of nurses.  I learned his meds, his monitors, his feeding tube care and was retrained in cpr. We did not mention a word to anybody because we were told in the beginning of all this that you never tell anyone until you are in the car. To many times they have told parents they were going home the next day only to have something happen that night and they don't leave. We were very close to that.  Wednesday morning was our goal only it seemed Paxton's potassium was being affected by one of his medications so they had to modify that dose and see if the level went down on 5 o' clock blood draw.  His doctor said to plan on Thursday instead. I was worried as we waited that this might not happen. The hours were eternal as I waited to hear if we would be able to take our son home.  I did not go pack up at Ronald McDonald until I knew for sure. I felt like I might jinx us if I jumped the gun.  Finally at six that night we got the word that we were free to go.  It was the most amazing feeling. I called my husband and asked him if he was ready to blow this popsicle stand. He said "for real?" We both just really did not think this time would ever come. So he jumped in the car and made the two hour drive to pick us up while I went and packed 2 months worth of stuff up.  I made it back to the hospital in record time and we prepared to head home. We said good bye to some of our favorite nurses while we waited for my husband. Take a peek at all of Paxton's girlfriends:

While these are only a couple of the amazing people we had caring for our son in the time we were there, I happen to have a soft spot in my heart for J, she was our nurse while we waited to get word on whether we would go home or not and I think she wanted it as bad as we did. She got goose bumps when the doctor told her yes on the phone.  S, was also one of our favorites because she took the time in the very beginning to teach me a lot things about HLHS babies. She gave me advice, showed such kindness and truly cared for Paxton. She even made us call her to tell her we got home the night we left.  It is actually bittersweet to leave because the nurses become your friends while you are there. You lean on them, talk with them, even laugh with them and you put your child in their care all day every day. It's virtually impossible not to have a connection with them.  As we left, we walked near the board by the nurses station that has all the patients names listed and as tradition in the CVICU, the parent erases the baby's name as they leave. I walked up and as I erased his name after 2 insanely long months away, I was covered from head to toe with goosebumps at the journey we had just traveled! 

We were ready to be a family again. Paxton did great on the two hour drive home and slept the whole way. We got home around 1 a.m.  and went straight to bed.  We were very excited to see the boys reaction to their new baby brother. It was priceless and for that you should stay tuned...that post is one of it's very own tomorrow.  
Thanksgiving day went well. We spent a great deal of the day trying to get situated. I mean I was gone for 2 months and I had a lot to get settled into. Luckily my mom was here for a few days and worked her butt of with me to get everything in order. Big thanks to her!!! It takes a lot to get used to life with a special needs baby as well. He's on 6 medications, a heart rate/oxygen monitor 24 hours a day and must be kept on a pretty strict eating schedule so that we can get him nice and plump for his next surgery and he can't cry for long. I consider myself a pro at "mommyhood" after having 2 under 2 for a long time, but having a baby with such a severe heart complication makes me nervous. I am constantly checking his color, his temperature, his monitor, his breathing.  I am scared that this will all end soon and he will have to go back. I am scared to go back to St. Pete on Monday and have them recheck him for fear they will readmit him.  It's a scary process. It's not easy mentally to have a sick baby. The worry never ceases, but I take it one moment at a time and give thanks for what we do have, and that is him here with us now and seemingly doing well.  We even cat napped in bed together tonight which is what I have been aching to do with him since he was born.  Dave just stares at him, feeds him and of course:

they watched football together!  We are adjusting to life at home and taking it day by day.  We are so happy to all be under one roof again. The older boys are beyond excited to have Mommy back and are loving their baby brother.  It has been one heck of journey this far. Some days I didn't know how I would make it. Some days I wondered if we would ever all be under the same roof again, but here we are and it is heaven.  I relish each and every second that we are here because we never know how things will change and we do have to do this all over again for his second surgery in 4 months.  We know to appreciate it all and man do we!  We are so blessed and as we jumped around hooting and hollering today trying to get our Christmas card picture for this year, I stopped in the moment, looked around at my beautiful family and sighed, we were home. All of us are home!
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Tuesday, November 24, 2009

Giving Thanks

Thanksgiving is just around the bend and it obviously tends to make people stop and reflect upon what they are most grateful for.  This time of year just does that to ya! I myself have been spending the last 24 hours in a playback movie of my life the last couple of years and boy do I have a lot to be thankful for this 2009.  We have one heck of a year behind us and one heck of a year ahead of us. For us, our greatest blessings are smiling at us each day.

As we head into the holiday as a family having been separated for all to long, we know that while we have never taken each other for granted, we will no longer ever let the little things take precedence over each other. The clean freak that I am has learned to let it all go and spend each precious moment with my children and husband, for it will surely be still be there when I am good and ready.  My husband has found an appreciation for me that he may have never known was there until he was thrust into "Mr. Mom" role overnight (and amazingly good at it too).  I am blown away by the man he has become and stand in awe of how he has chosen to handle all of this. We have a new found appreciation for each other, all of us, even our young children, seem to understand the gravity of all that has happened in the past few months.  Even they stop for the extra kiss, cling a little tighter and hug a little longer.  Life has blessed us with just that; a still very raw reminder of the fragility that is this life.  
Soon, very soon, God willing we will have our family under one roof, and man are we ready. This Thanksgiving my husband and I give thanks for our children and all that they have taught us and continue to teach us. We give thanks that Paxton made it into our family and fought to stay with us each and every day for the last 2 months. We give thanks for the amazing doctors and nurses that cared for him through this journey. We are grateful for the renewed strength our marriage has experienced in our time apart, for we chose to grow stronger from this and not weaker. We are grateful for our party of 5 and for all of our extended family, our friends, and our readers.  

Enjoy your holidays! 

Life is what you make of it, so make it GOOD!

And stay tuned... you won't want to miss the next post!

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Saturday, November 21, 2009

Frick And Frack

Why would we not put our toy animals in the straw of our sippy cup...

or shove fistfuls of food in our mouths...

Because then you get this...

and this! at home with boys! How I freaking love it!

Paxton had a good day today. Mommy held him nearly the entire time and he finally got his first bottle this evening, of which he gulped down in approximately 2.4 seconds! Tomorrow, we work on weaning him off his i.v. medications.  Keep your fingers crossed that this goes well. Paxton has not had great luck in the past with this.
Sadly, Daddy did not get to come see us this weekend, because everyone has colds on the home front and we can't risk Paxton getting sick.  We miss our Sundays with Daddy, but are hoping to be enjoying them at HOME with Daddy very soon!

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Friday, November 20, 2009

Weary and Weepy

It is after midnight as I begin this post.  Today was so highly emotional and raw.  I am weary and I am weepy. In fact, I think I have been crying for like three hours straight now.  Life right's a lot to take in day after day, I can't lie about that.  Today it seems to have all caught up with me.  I know that we are close now. I know the anticipation of it is hitting both my husband and I hard. My husband is the rock. He is positive. He smiles. Never gets down. Never complains. Tonight, for the first time since this all began two months ago, I see that he needs me back more than ever. I am torn, always torn. I am a wife and a mommy and I want to be able to be those things to my family, but instead today I sat bedside in a chair because I could be nothing. I couldn't help my husband. I couldn't help my two older boys who are crying out for me and I couldn't help Paxton who was in pain and hungry. I tried to hold him tonight but since he cannot eat until morning and is ravenous, just being near me made him root and try to eat...if you follow me!  So I had to put him back in his bed because I was not going to torture him like that.

He did amazing through surgery.  Here is his post op picture for those who haven't seen it. As I have said before and I will say it again, I post these pictures so you all can really see just how amazingly brave and strong our son is.  No baby should ever have to endure all that he has, but Paxton does it with a grace that brings me to tears. I should also note that this is the FIRST picture of Paxton with zero tubes on his face since the day he was born two months ago. How beautiful to see his entire gorgeous face! Yes his head is shaved, they had to cut his hair where they put an IV put into it. Again, so brave, just the thought of that makes me cringe.

Surgery was fast and they did not have to intubate him.  Recovery was hard on him. He was grumpy, painful and hungry. At one point his color got dusky, his oxygen quickly dipped down into the low 60's and he has to be greater than 75. So we put him on blow by oxygen which seemed to help him. It was pretty nerve wracking for about 15 minutes there while I stood by and let his nurse do what he needed to do to assess the situation.  Then I had to leave because his neighbor was not doing good at all.  They, then decided at the end of the day to move his bed to another room at the end of the hall for staffing purposes.  I was NOT happy about this, but never say a word about anything so I just went with it.  He was moved around 6. Shift change is at 7 and by 8:30 no one had been around to assess him or even look at him so I was getting antsy.  I needed to come back here and go to bed, but I was not about to leave my son, who is what they call a "blue diamond" because he's so risky, alone with no one monitoring him. Eventually I went to get the charge nurse to see how this could be resolved. In a nutshell my friends, I have never been treated the way I was treated by her. I was horrified, crying, standing there with my jaw on the floor.  Apathetic and rude. She literally left me standing there sobbing. No lie!  Nearly all of the nurses we have had have been amazing, kind and comforting. We have a couple who are above and beyond hands down the best, you know who you are H and S! Paxton loves you! So needless to say I was floored with how this nurse was treating a new, scared, stressed Mom.  I handled it the only way I know how... by crying. On the inside I wanted to be this big bad Mom, but I always wind up in a puddle of tears. Man, I gotta work on that!  So then, I decided I was not leaving my sons bed until he was fast asleep and here I am at midnight, eyes barely open updating all of the blessings that have been handed to us in these past few months, that's you all, our readers.  Your comments, support and prayers literally got me through this endless day today, from the bottom of my heart I thank you!  I will be addressing the situation that happened tomorrow with a higher up, just fyi.  That lady has zero business working in the department she is in.  
As I was walking out of the hospital tonight and up the stairs of the Ronald McDonald house at the hour that it is, I looked ahead of me and saw another Mom and someones Dad. We were all walking beaten and weary up the stairs to collapse into our beds. I couldn't help but be in awe of this journey that my family and so many others are walking.  It's long and it's hard, but we all suck it up and do what we need to do for our babies.  They need us and somehow we muster up the strength to be there. Paxton made it through another surgery.  He is here with us and as of now, he is stable and on the path towards home.  I laid my head beside his tonight and told him all about how close we were to taking him home for the first time. I told him how excited his brothers are to meet him and I told him everything was going to be alright.  I think I was telling us both that, but he understood. He looked dead into my eyes with his gorgeous blue ones and spoke volumes, my old soul, he who lifts me up when I am down.  While I do not let the struggles outweigh the victories, I do see that our family is tired.  I also know that tomorrow is another day and we will all wake up in better spirits. We will do this, we have done it this far and we will do it until the end. This is in fact, just the beginning of this journey and each day of it I learn something new.  Something big, sometimes something small, but I learn and I just know that in the end this will make us all stronger and wiser. In fact, it already has my friends.

Tomorrow, the better day that I just know it's going to be, I will update with some pictures of Paxton in better spirits and I want to share about my time with the older boys!  The pictures are darling and I just have to share, but my body is telling me to say good night for now!  Thank you again for joining us on this roller coaster ride! It means so very much to know that we are not alone! 
Of course, one last picture of me snuggling with my boy just before surgery.  The last one with tubes on his face, finally! He's crying because he's hungry and the picture is smeared because my Mason had his grubby, little, delicious hands on my camera while I was home last and apparently he also knows how to get the lens cap off!  

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Thursday, November 19, 2009

Prayers Please

It is late and I am tired as I write this so it will be short and sweet until tomorrow. I just made the two hour drive back here to St. Pete after spending a night at home.  I had a wonderful day with my boys, which I will blog more about tomorrow. As soon as I returned here, I went straight to the hospital to snuggle with my little fighter. When I walked in he was awake looking all around him. I scrubbed in and immediately picked him up and within five minutes he was fast asleep on Mommy's chest. We sat there together for an hour and a half. I smelled his hair, stroked his back and gave a hundred I missed you kisses.  I just wanted to quickly jump on here in case anyone may stop by tonight or early morning tomorrow to let you know that Paxton will be going into surgery tomorrow to get his feeding tube placed. While the surgery itself is relatively quick, about an hour, easy peasy compared to 5 hours of open heart surgery actually, it is still always a risk with these little heart babies.  So, I come to you late tonight asking for anyone who stops by to please take a moment and pray not only for the surgery to go well, but for his recovery to go smoothly also.  If he handles surgery and recovers well, we may be able to go home in about 2 weeks. I am ready to get my  boy out of the hospital. His brothers are SO ready to meet him and Mommy and Daddy can't wait to snuggle with him in bed.  I will be updating tomorrow on facebook and since we have quite a few new visitors praying for Paxton via our blog I will be updating on his progress through twitter again until I can get to updating a post! It is located on the left side bar under the Blogher ad. As you can see, it has been a long time since I posted on twitter, sorta weird to see what the last "tweet" about feeling the baby kick before we knew he was sick and that we would be where we are right now. I remember exactly where I was when I "tweeted" that. It's weird how life does that to ya... Paxton is doing fantastic as of tonight, may God allow him to continue on this path towards home!  Wouldn't that be something to be so very, very thankful for! Until next time, cherish the little things my friends!

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Sunday, November 15, 2009

Seven Weeks Of Crazy/Beautiful

I once heard a quote: The days go by so slow and the years so fast.

It's completely true, my friends.  The days here go by sooo slow and yet we have been here SEVEN weeks already. We are nearing the two month mark.  When I think of it that way, I can't believe it has gone by that fast. I can't believe Paxton will be two months old next week. Some days I feel like I should still be pregnant. The end of his pregnancy, the delivery and the first few weeks after his birth were such a whirlwind of time and emotions that I haven't had time to wrap my head around all that has happened.  
I am ready. My husband is ready. The boys are ready. Paxton is ready.  I tread EVER so lightly when I say this, but he has taken a turn towards AWESOME.  Yep, you thought I was going to say a turn for the worst, but he has not. Last week, he was in some weird funk, we thought he had an infection. Doctors postponed his feeding tube surgery,  sent out all kinds of cultures, started prophylactic antibiotics, I held him while he slept because all he wanted was TLC ( and I happily obliged) and he was stuck umpteen times trying to get i.v. access. It was not a pleasant week to say the least.  Then, all of a sudden he improved.  His oxygen levels have been perfect, his meds all appear to be doing exactly what they should be (we were doing a lot of  "tweaking" to them), his cultures all came back negative and he is eating like a ferocious animal. He even nursed for the first time, having never had anything but a bottle, he took right to it and I proceeded to cry my eyes out and so did his speech therapist. He was rescheduled to have his feeding tube surgery early this week and apparently Paxton has other plans because he has gotten so strong and is almost able to take a whopping 65 cc's by mouth!  That my friends, is a really big deal for such a tiny, 8 pound, baby who's heart is on overload! Tomorrow morning the doctors will round and I am sooo anxious to see what they have to say about Paxton's "care plan".  Dare I say it, but I feel like we might be getting close.... I am scared to say how well he is doing and I am scared to say how positive I feel. As I learned early on, I have no control over this situation. I don't have any clue how or when this will all end and I try not to get to excited, but he looks so darn good.  I mean look at this picture. Have you ever seen anything more beautiful? home! (From the movie, E.T. for the younger crowd)

I went home again this weekend and got to hang out with my boys. We did normal things like running errands to get new "kicks" ( Austin and Mommy's word for shoes) for the boys, a target run and even Austin's first birthday party with a friend from school. I just love doing normal Mommy things. I never realized how I would crave those things until they were taken away from me.  I am not sure how I will manage with two toddlers who thrive off of running in different directions, who love to look at me with the biggest grins on their faces when I say stop, and then run faster. Only to add Paxton to the mix with his monitor that he will be hooked up to all day every day. It is going to be wild, but then again we are The Wild Wild Wests and we always manage to work it out.  
Crazy/beautiful, that's what someone very near and dear to my heart just wrote to me about our life. It is crazy/beautiful.  There are so many things that we never dreamed would happen to us in a million years that have happened in the last two months. My husband and I walked down the hallway of the hospital hand in hand tonight, saying that exact thing out loud. Who knew our Sundays would be filled with walking down ICU hallways just 4 months ago. Crazy, but so beautiful. When we get to see his face, when we see the kindness shown to us on a daily basis, when two toddlers are tearing through the house screaming with a baby on my hip, it will be crazy/beautiful.  My oh' my, how I cannot wait to see that day and when it comes I will stop in my tracks and praise God for getting us there! 7 weeks of living here and there. 7 weeks of separation from my family. 7 weeks of hospital life all day.  7 weeks of scared. 7 weeks of sheer exhaustion. 7 weeks of pumping round the clock. 7 weeks of patience. 7 weeks of strength. 7 weeks of growing closer than ever with my husband. 7 weeks of learning life lessons. 
7 weeks of crazy/beautiful and many more years to come!

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Wednesday, November 11, 2009


It truly is amazing how we can spend a lot of energy wishing time would hurry up, only to turn around and realize it's over in an instant. The high seems to come not from the actual event, but from the anticipation or dread of it.  I have spent today realizing just how far I have come in one year.   

One year ago today, I went in for what was meant to be a regular ultrasound. One year ago today, I laid on the table and saw my third baby curled in the fetal position, gone. One year ago today, I had to say good bye to the dreams that I had for him.  One year ago today, I hit rock bottom. One year ago today I wrote this:
I am astounded at how the time has flown. It seems like just yesterday that I had to be escorted to the car by my husband because I could not see through the tears to make heads or tails of which direction I was headed.  I would have had a 3 year old, a 2 year old and a 1 year old. Would have does not mean should have.  
Little did we know, God had big plans for us.  
One year later, I have risen above the deepest pain I have ever known. One year later, I have successfully said good bye to Tadem and choose to remember him with a peace in my heart.  One year later, I have managed to grow another baby in my belly. One year later, I found the strength to forge ahead when handed a diagnosis for our son that rocked us to our core. One year later, I experienced the deepest fear I have ever known. One year later, I have given birth to our fourth son. One year later, I have watched him suffer through things none of us would ever wish on our child. One year later, I have endured separation from my family that has shattered my heart to pieces. One year later, I can say, "man what a freaking year, but we did it!" WE did it! None of this could have been done without the rock that is my husband.  I was angry, ugly and sad. We hurt, we fought, we cried and we struggled, but one year later we are stronger than I have ever known us to be.
It is amazing what can happen in just one year.  While it may seem like forever, it really and truly goes by in the blink of an eye.  It is when I stop to reflect on where I was in my life one year ago that I realize just how quickly where I am today in my life, will be gone. 
 It's been a powerful period that we have been through and the power of it shows me that time is fleeting. I had one life changing moment occur and almost exactly one year later, another life changing moment has occured. Both of which have forever changed us and in hind sight, for the better.  What we have taken and continue to take from the death of one child and the birth of another are forever engrained in us.  While I wish neither of these on anyone, I can say that they have both shaped our family for the better in the lessons Dave and I have learned and in the guardian angel that one boy is to his brother(s).
In closing tonight I send hugs and kisses from MaMa heavenward to my boy.  He too, taught me so many things in his short time inside my belly and apparently he has passed it on to his brother Paxton.  These two special boys are united together by God to bless our family. Aren't we lucky...
One year ago we said good bye, one year later Mommy has not forgotten you Tadem and for all the years to come, I will never forget...

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Monday, November 9, 2009

Holding On

I am sitting here in my room at the Ronald McDonald house that ahem...has no t.v. so instead I am listening to Michael Bubles I Wanna Go Home on Pandora. He says it all when he sings:

I feel like I am living someone else's life. It's like I stepped outside. When everything was going right.  I wanna go home.

This room is empty and plain and I know many have sat in here before me, feeling all that I am feeling right now. My stuff remains in laundry baskets unpacked only touched to grab an outfit to go see my boy.  I am attempting to pay bills and do all of the "normal" things in life that don't stop when you have a sick baby. It is taking me forever to get through this one thing I need to do, but paying bills seems so unimportant right now and yet life is sadly, all about money and bills. The medical bills have already started pouring in. They sure don't waste any time do they.  It's never ending. What is ending at some point, is this stay here. While I can't see when that will be, I am trying to focus on that day. Trying to find strength in how far we have come.  A brand new baby was born this morning and brought into Paxton's room just after birth and I saw flashbacks of my life over a month ago.  The brand new Daddy terrified and nervous hanging over his baby's isolette as a slew of tests were being performed within an hour of being born.  A while later Mom is rolled in in her wheelchair eyes full of fear and sadness.  That was Dave and I, jumping at every alarm and looking wide eyed at doctors and nurses for answers and reassurance.  Here we are on the other side of that. We know what the alarms mean. We know where all of his numbers should be. We know all of the medications and what they are for.  We no longer look like a deer in the head lights.  We have taken this for what it is and I was glad today to be where we are. I wanted to get up and go to that family and tell them that it will get better.  That the insanely scary and gripping feeling will ease. While this journey will always be surreal, it eases and becomes a sort of weird normal.  No baby should have to go through what our babies go through moments after birth. It's cruel and harsh, but necessary to keep them here with us and it works.  Paxton is proof that while it isn't the kindest, gentlest road, it is a road worth traveling because it means the possibility of going home one day. It means there will come a day when we will see smiles and hear laughter from these miracle babies.
Paxton continues to remain stable and do well.  We have had a few scares, but he likes to do that to us and then bounce back. I pray he continues to do so.  He is scheduled to get his g-tube (gastrostomy tube) this is a permanent feeding tube that will be surgically inserted into Paxtons stomach wall and allows us to feed him what he is unable to take by mouth.  Paxton's heart works so hard just at rest that adding the exercise of feeding to it tires him out so quickly. This does not allow him to take in enough food to gain weight.  Therefore the rest will go in his tube allowing him to gain weight and grow.  He is also getting calories added to his breast milk to help fatten him up.  See, he his is basically working out all day, so it is very hard for HLHS children to keep weight on.  A feeding tube is very commonplace round these parts =)and it will allow us to get home faster than the time it would take to get him strong enough to get him to take it all by mouth, which can't even be guaranteed. Paxton will not be on this feeding tube for life. He will have it until his next surgery and maybe for some time thereafter, but not for life.  Some babies go home and start eating once they are out of the hospital. Some need it until after their second surgery, some need it until after their third. Each baby is different.  
He has broken the 8 pound mark, finally, at 5 weeks old! Is starting to track objects and can definitely focus on what is in front of him. We found out he has two big, beautiful dimples when he smiles. He has his Daddy's eyes, even a deeper blue if you can imagine that.  His eyes are so big and tell his story already. They are deep and soulful. He started out looking exactly like Mason, then changed to Austin with the angelic eyes and mouth and has transformed into his own little self. He is Paxton. He has a little of all of us in him.  Daddy and Masons nose.  Mamas lips and dramatic expressions. Austins angelic face and hair (although there is a deep red under tone to Paxton's, like Dave's beard)

He had a rough morning this morning as his IV was accidentally pulled out by a nurse last night and he had to get re stuck this morning endless times (that was the Mama bear facebook post). They even had to shave his hair in an attempt to get one in his head. Yes, I know, how awful! They didn't even get it in there, it wound up in his foot.  I felt so bad for him because the nurse said he was getting so upset and turning purple, which is never good for these babies. They cannot cry for to long or get angry. It causes their respirations to increase and their oxygen levels to plummet.  They turn blue and dusky. So he gets babied a lot and we push the paci as comfort for him.  Basically though, Paxton is an angelic baby. HLHS babies are what we call "high stim" meaning they are easily over stimulated and while Paxton was at first, he seems to have taken on his Daddy's personality and is known as the best, most mellow baby in the unit!  He only cries if he has a dirty diaper, is hungry or if he is getting poked with needles (understandably) other than that he sleeps and stares at the toys hanging above his crib or his Mommy.  
He's doing well. God is listening.  We are blessed. He knows how and when this will end and until then I am holding on. 

For Him, I am holding on.

If you have not listened to the song on my blog called Bring The Rain, please turn on your speakers, scroll all the way to the bottom and click to play that song. It is one of my favorite songs of all time and really resonates with where I am at in my life right now.  

You all should enjoy it too.

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Thursday, November 5, 2009

Happy One Month Birthday Baby Boy

Today our son turns one month old!  There were days when I was still pregnant with him that we were not sure he would be alive to see this day. God, has blessed us. He is here. He is perfect. He is fighting the biggest fight of his life.  Just as sure as the H (home) word was mentioned to us as a possibility in a couple of weeks yesterday, I in turn, got the phone call at 2 a.m. this morning that his heart is struggling.  His heart is working so hard to keep going. It is a delicate balance. One day everything looks picture perfect and hours later it all changes.  I am working on not looking to far down the road, one day at a time, one hour at a time, one prayer at a time. Today our son turns one month old and the alternative makes me realize that I/we can do this. Even though there will be many tears through out this, many angry days, sad ones and joyful ones. I do believe that God has a plan for us and for our son and as we wait to learn what that plan is, I am finding a patience I have never, ever known. I am learning what is really important in life. I laugh at what people complain about because all I have to do is walk into this hospital and look to my left and look to my right to see babies on life support and  I find there isn't much to complain about.  I am forever changed by this beautiful boy God has given me.  I know my husband  is as well. Actually, I am pretty sure a lot of people are changed by him. I do know that is part of his purpose here on Earth.  He is one month old today. My, how our lives have changed in one month.   There is a beauty in all of this that comes with seeing just how precious life really is.  When I see him smile (most likely from gas =) I see beauty. When I look at his scar where he was cut open at 4 days old, I see beauty. When I see his strong Daddy holding him, I see beauty. When I see life at it's most fragile, but hanging on, I see beauty.  In a world full of mass chaos, I choose to find the beauty in it. This does not mean that I don't have awful days, today has been a day of waxing and waning through tears and hope. Just as his life is a delicate balance, so are my emotions. However, when I walked out the door this evening to go reserve my room at Ronald McDonald house for however much longer we will be here and felt the cool air on my face, I felt a peace wash over me, truly I did.  While some days that falters, I choose to look up to the sky and see the beauty. There lies my Grandma, my Grandpa, baby Tadem and God surrounding me with love and strength when it is lowest. I hope that anyone reading this will choose to find the beauty that is this life.  Tonight, won't you stop doing the laundry. Leave the dishes until later and instead get down on the floor to play with your children. Smell them just once more as they lay peaceful in their beds. Then sit and snuggle on the couch with your partner.  These are things I would give anything to have right now. It is nearing six o' clock as I finish this post and I am in a hospital by my sons bedside and what I wouldn't give for us to be home doing dinner, baths and bedtimes.  Remember the little things my friends. Remember what's important and when you feel frustrated, as we all do, dig deep and see if it matters in the big scheme of things. There you will find your greatest life lessons. 
Thank you Paxton for teaching your MaMa the most valuable lessons she will ever need in her life. You are amazing, beautiful and ever so strong.  
Happy One Month Birthday To The Biggest Fighter I Know! He WILL do this and we will be there every step of the way. How proud you make us son!

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Monday, November 2, 2009

All Aboard

To begin with I must mention our friends at Baby Be Blessed who have nominated Paxton as their recipient of the month for November. If you click on the title of this post you can head to their website and check out Paxton. I mentioned them in our last post as a wonderful company who made Paxton's "lamby bear" that he has had with him in the CVICU since the day he was born. You will see it in many of his pictures. I am pretty sure that lamby bear will be his lifelong friend. As I have said before, I am blown away by the love and support people we have never even had the pleasure of meeting personally, are showing to our baby boy! He has brought so many people together, taught so many people valuable lessons, and reminded us all how precious life is! Thank you again, from the bottom of our hearts to Baby Be Blessed and so many others for the kindness shown to our family.
In other Paxton news, he is doing amazing. He had a little rough evening tonight with a bout of "pukies" I have never seen this boy get sick to his stomach and let me tell you it isn't pretty. He hacks and gags and turns insanely blue! Paxton has not been quote "vigorously" gaining weight as he should be with the amount of food he is getting. (We measure it VERY carefully) It has been determined that he has increased pulmonary blood flow which is sending to much blood to his lungs instead of his body. His SAT's (oxygen saturation levels) and respiration's have been sitting pretty high, so an echo cardiogram was done and this was their conclusion. His heart is basically working so hard that he is burning off more calories than he is taking in. So today we started him on a new medication (oral, thank goodness) and increased the calories from 24k/cal to his breast milk to 26k/cal. Well, as soon as the first 26k/cal feed was finished he started gagging and salivating at the mouth. It was scary to see him trying to violently to throw up and of course he turned a bright shade of blue. He did this for several minutes until I got him swaddled back up and calmed down. We are assuming this is due to the increase in fat to his formula. It was just to much for his itty, bitty 7 pound system. He is almost a month old and still weighs 7 1/2 pounds. I am so grateful he had that extra bulk on at birth to compensate for the loss and lack of weight gain. He is still our "little peanut" Other than this, he is doing fantastic. He is taking the feeds orally like a champ and is getting much more coordinated and stronger every day. He is only on one i.v medication, remains off all O2 and is becoming very alert at times.
He also got moved to a big boy bed this weekend!!! He is so tiny it doesn't even look like there is a baby in it at first glance, but he seems very comfortable in it all swaddled up!

I am keeping my fingers crossed that we may be able to take him home for Thanksgiving. They do not give time lines for when these guys will go home as things change daily, so it is never even mentioned...I hope that another 3 1/2 weeks might get us there. All I can do is hope and pray. Won't you join me...

So... I made it home this weekend for the first time in nearly a month. I have not left Paxton's side since he was born. Let me tell you how freaking amazing it was to be home in my own beautiful, clean house, in my own big, comfy bed, in my super clean shower with my boys to snuggle up to! I have planned on going home since before the birth to spend Halloween with my boys and I was grateful that Paxton was stable enough to allow me to do so. We had so much fun together as a family in our own environment!

The boys had a blast on Halloween in our new neighborhood. There were kids everywhere, hay rides, a band and tons of candy (luckily the boys were to interested in all the people to care about the candy) They were both Thomas The Trains this year. I got the same costumes for them because they fight over everyyytthhinnggg!!!!!! So I get them the same thing at any given chance to avoid the ssscreeeccchhhinng the would ensue if they had something different from one another.
Here is Halloween 2008: (Cars and Nemo)

And here they are this year: (Man, they are the cutest kids ever!!!)

Have I mentioned how cute they are... I mean seriously, look at Austins conductor hat...He's got it on GQ sideways and it so works (ps-ya think he got his Daddy's eyes) Then there's Mason who is the biggest ham like his Daddy, eatin' up the camera!

Mason just enjoyed his freedom to run the streets without me yelling "stay out of the street!" every 3 seconds and Austin definitely got the idea of taking candy and putting it in his Thomas pouch. All in all it was a blast and by the way the boys were constantly asking to "go back to the party" on Sunday, they enjoyed their Halloween this year. I am so happy that I did not miss out on their fun. It made me feel so alive to see them so free and happy!

p.s I just have to send a shout out to our friend Jack. Actually he's Austin and Masons friend, but I just happen to think he is one of the sweetest, kindest kids I know. He faithfully reads our blog for updates on Paxton, wears his bracelet and had Paxton painted on his arm at the fundraiser instead of having his face painted. He is such a good kid and if my boys turn out to be as kind as Jack is, I will be one happy Mom. So, HI JACK, THANKS FOR READING OUR BLOG! WE CAN'T WAIT FOR YOU TO MEET PAXTON!!!!

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