Thursday, March 29, 2012

I got nothing...

I write this to you from my phone as I sit in Paxton's hospital bed~again.
We were readmitted today. I have nothing. No clothes, tooth brushes, phone chargers ( went and bought it all) because I didn't think we would be here right now and of course we live two hours away. Pax has a couple of things going on with him. One of which is transient synovitis hip(s). Google it because I haven't the strength to explain and the fluid had also retuned to his right lung. We found this out via our post op appointment today. Meanwhile last night we were in our local ER for his inability to bear weight on either leg. It was super scary as I thought he was throwing a clot. Long story short he just got another iv, what's that like 6 in two weeks. I am again snuggling with him in his bed and we are both heartbroken. We have infectious disease, ortho and cardio coming tomorrow. Rumor has it he is going to need that cath after all since the fluid has returned. Guess we will see on the flip side.

My heart is literally shattered. I said good bye to my boys this morning and they expecteded me home tonight and once again I left and didn't come back. They got me for 2 days. That's it. Tonight it's not fair. Tonight my glass is not only not full, that B is empty. I'm angry and sad. I want my boy to stop being a pincushion and I want my older two to have me as a constant in their lives without worrying if they bat an eye that poof I'll be gone. The tears have yet to stop. Not sure that they will until I am tucked safely in my house again. Please pray this is fast. Next week the boys are on spring break and we had a lot of catching up to do. I want that. I want time with them. I want us to be home damnit. Tonight I am not strong, I am not wearing my big girl pants, and focusing on the positive. Tonight, I got nothing....

Tuesday, March 27, 2012

Booyah!




































Oh hell yah!!!!

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We broke out peeps!!! I type this to you from my very own bed!!!





























We were discharged last evening. We didn't tell Daddy and walked into the house around 7:30 without him ever knowing. He was beyond surprised!  So surprised in fact, that he was chillin in his "man pants"  when we walked in so no pictures are able to posted of the Daddy/Pax reunion. ; D

The older two boys were already down for the night which was good because it allowed us to get Pax acclimated. We gave him a shower/bath to keep his incision from being submerged, yet allowed us to wash all of that hospital off of him so much better than the brotha baths he got for two weeks. He stumbled around like a drunken soldier (he is still sooo weak) from room to room checking everything out and playing with his toys.  I hovered like the helicopter mom I so am not.

I put him to sleep in his very own bed. Clean sheets and all. He won't let me out of his sight.  I laid with him until he was asleep, then snuck out to be in my own bed.  By 2 am I was back in his bed. He woke up crying for me and a running I went.  My nearly 33 year old hips, those hips destroyed by running, beg of me not to spend another night on my side curled around him. They ache and hurt so badly, but I will ache and hurt until the day I die for that boy.  Pax is acclimating. It's not easy. The transition from hospital to home life has affected us both more this time than it ever has before.  He was up all night tossing and turning. He cries at the drop of a hat.  So do I.
In my mind it was going to be fireworks and huge tada's. Instead, it's been more of a tears and hugs homecoming.  Which is better because I am not sure either of us could handle fireworks this go round.

The boys skipped school today to be with us. Then tonight I left Paxton home with Daddy and took the boys to a baseball signing event.  I can truly admit, because I am always honest on this blog, that I was in no way ready to be out in public yet.  I went because I wanted to spend time with the boys, but any hospital mom can attest to a waiting period that is needed when going from  living in a 15 x 15 room to being out in the world, among people, and the fast pace that life these days holds.   I wasn't there yet, but I got time with my boys in spite of it and we all know I have been on pins and needles waiting for that.





































Each day will get better, the tears will subside and Pax will get stronger.  So too, will I.  Life doesn't allow us to hibernate for long and just as anything else takes practice, so does getting back to the real world after being absent from it for awhile.  S'gonna be ok.  We have climbed mountains thus far... this here is just molehill.

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Reunited and it feels so goooood....









































Thank you and a little something on my mind post coming up after Paxie and I get caught up on our sleep a bit.

We are home.  Life, while weepy, is so SO sweet!


Love and hugs~
j

Sunday, March 25, 2012

Fighterman

It's dusk here. I love this time of day. It is when the world starts to settle.  Calm makes its way in to take over from the chaos of the day. It is when the aroma of dinner begins to fill the house and freshly bathed littles in their jams start to mellow for the night.  I am looking out over the window of Paxtons hospital room, staring at the setting sun with longing; "fighterman" asleep behind me.   I am reminded of how much bigger life is than we can even imagine.  Just as the miracle of babies growing in our belly's is more than just a science, so too is the rising and falling of the sun each day.  Life is big, but there is ever so much more to it when you stop to take it all in.





































We are amidst life and death right this very moment. Babies on either side of us cling to life. As I stare out I am acutely aware of this.  As far away and lonely as I feel right now from life on the outside, I am also incredibly aware that this in here is life too.  That sometimes paths involve a fight we never expected. A path that is far more than everyday carlines, dinners and playdates.  A path of separation, struggle, fight and glory. That glory being a well of emotion I never knew until I had children, most significantly one that has had to cling to life himself.

This path I talk about, the one that ebbs and flows, waxes and wanes, it is so full of what life is meant to be.  Not a life of who has the coolest clothes, most friends, nicest car, but rather a life of love and understanding that this is it.  We get one chance and I find myself thinking so very often how do I want to spend this one chance.  What legacy do I want to leave behind.... I like to think in these softening hours of the day that I will be able to say I lived this life. I did it all, sometimes to much, but I know that for every thing I have chosen to do or not do, there lies a lesson and for every lesson there is growth.  Balls to the wall, go big or go home Jenn.  That is me, but you know what, we laugh til it hurts, we dance through the storm and I'll be damned if we ever give up.

I am totally down with that legacy.

I cannot say that I would be those things had I not been backed into a corner with no choice, but to fight.  To fight for the greatest love I have ever known.



































Oh' dusk you stir me up. Remind me where I am going and where I have been...

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Paxtons CRP number dropped from 19.5 to 13 overnight.  The fact that they are dropping is good. Why they are so high is still undetermined.  He should be at 1.  Tomorrow an Infectious Disease doctor is coming by to assess him and all of his labwork (I don't like the name Infectious Disease, it makes me think of a nasty, incurable, contagious something or other ). IF and by if, I mean IF, Paxton's numbers continue to drop and ID finds no logical explanation for them, then we wipe our hands saying he caught a bug and head toward H.  If his numbers have not dropped further or have risen we remain here until we can pinpoint what/where this infection is.  Our main concern is not sending us home only to have us return.  I agree.  For now, we are chillin here.  I am guessing we have watched Cars roughly 45 times at this point, I stopped the tally at 32 cause it was a lot of effort to get up and switch numbers on the dry erase board ; ) We watch videos of brothers on my phone. We get visits from awesome peeps who help pass the time.  We are woken up far to early so we sleep in late.

Pax is my main man right now and if I thought we were close before, this time here together has super glued the deal.  I am the ketchup to his cheetos (yes, he truly eats that) and he is the ice to my diet coke.  At 2 1/2 I swear the kid knows I have been with him every single, solitary step of the way and his eyes say thank you a million times over to me. He clings to me like the little cobra that he is and every time I pretend to pull my arm away he tightens on his prey even more.




































He begs for hugs, for me to "way down" with him, to "hold you" and I always, always will.  Hospital or otherwise when my kids ask for hugs or for me to lay down with them I do so without hesitation because soon enough they won't ask anymore and I will look back knowing I never let a moment go.
Cheesy? Maybe? But when moments are threatened you quickly learn to cherish them.

It is my hope that tomorrow when the sun rises again, we have good news. Promising news.  That sooner rather than later we are back where we belong living the life of carlines, dinners and playdates, only we are lucky enough to do so with the extra gift of knowing that even those things are extraordinary.

 Goodnight from my "fighterman" and man is he ever a fighter!







































Love and hugs~
j

Saturday, March 24, 2012

Learning To Dance...

Tonight I cried.  Tonight was one of these nights.  I am sad and I want home.  I want my boy to not be poked anymore. I want him to crawl into his own bed and smell the softness and comfort of home. I want to do the same in my bed.  Daddy came to visit today. He surprised us and it was wonderful because we were sad this morning.  The H word was mentioned about this weekend and no sooner was it brought up that it is snatched out from beneath us.  Paxton's CRP test (a blood protein test to look for infection) not only came back positive but doubled from 7.5 to 19.5 in a matter of 12 hours.  Not good. His body is fighting something somewhere, it's just a matter of finding out what and where.  Cardiologists came in today and went back and forth about why the drastic spike and what it could be from. They talked more testing and more sedation and my heart broke.  I want him home, where he belongs.  I want that normal I talked about, that I have been dreaming about.  It is so hard to watch your husband leave again to go home to everything you love while you stand in a sterile lobby tears streaming your face.

I am trying to dance.  Trying so very hard, but we are both tired and we are both missing home so deeply and I want to be all happy and funny and tell you how Paxton puked all over me this morning and I panicked and hit the staff alert button because I couldn't find the remote with the nurse button on it,  so my next best thought was to alert a staff member. Easy enough right. No, that is basically a code blue, but without the paddles kinda situation. So the door flies open, I am standing there puke covered, with 12 people staring and I say "uh...I'm guessing I wasn't supposed to hit that button." The humorous side of me told them I was just making sure everyone was awake! . The unhumorous side of me had just watched my boy get woken up at 5 a.m.  to be poked 4 times by a legit idiot, who made him cry so hard he puked all over.  (also here's a thought: they need to change the wording from staff alert to emergency staff alert .  I mean staff alert seems so not life or death)
So I went downstairs and showered. I came back up, crawled into bed with my boy and we didn't move until 11 am.  Clearly we had some catching up to do or maybe we both thought what was the point. Why not just snuggle all morning because right now we're living in a hospital and there's nothing worth getting up for so lets just stay right where we are.

Tomorrow I hope and I pray we get better news on his numbers.  I hope tomorrow while we endure the storm that there will be some dancing too.  We hope for a lot right now and we continue to learn how to dance through the storm not against it.




And like my girlfriend said today after reading this on my FB, "at least you've got moves". You all just wait to see my moves when we get the all clear.  They may go a little something like this....






































Running man style right out the front doors of this B!

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And lastly, because what's a post worth without a picture of the blue eyed babe that has stolen hearts all across the CV unit.





































That look says I am in charge,  that crossed leg says I am a P.I.M.P.  and that drink says the apple doesn't fall far.

Will update tomorrow when I know more.  Prayers appreciated, heart hugs going out to all our peeps!

Love and hugs~
j

Thursday, March 22, 2012

I Proudly Introduce To You...


Paxton West status post Norwood, Glenn and Fon-freaking-tan!!!









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8 days post op and nothing remains on this child, but IV access in his right arm.  All chest tubes pulled, pacing wires pulled and all art lines pulled.  Peg tube replaced for a mickey button today and all his meds are PO.  Meds being lasix, asprin, tylenol and clindamycin.

It's close!  So close I can smell it.  Smell it as in my home, dinner in the oven, laundry wafting through the house, the nape of my older boys necks.

The book that started it all is coming to a close.  Who's ready for the sequel....

Love and hugs~
j

Stream Of Consciousness

It's a stream of consciousness kind of night because I am not going to lie, today was tough.  Pax and I got roughly two hours sleep last night and that compiled with the lack of sleep in the last week altogether sort of sent us both over the edge today. There came a point where my head was so foggy I thought for sure I was getting the flu. That has since passed, thank God, but it never ceases to amaze me how the body begins to shut down when it hasn't had enough rest.  I kept reminding myself over and over how much worse it could be and I let myself cry when I needed to.  I missed field trips and baseball games today. I am homesick for my boys and it hurts my heart. I have these amazing people stepping in to do these wonderful things with my babes, but I am sad and jealous that I cannot be there.  That is the truth and I think any mother would agree that you can be grateful and jealous all at the same time. Half of my heart is here and the other half is 2 hours away from me.  It feels like it's been so much longer than it has.




















































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The update on Paxton is this:

























The diuretics have worked to dry up his lungs and stop more fluid from forming. He is not "dumping" anything out of his piggytail anymore which is also awesome news. He got his left piggytail pulled yesterday and only the right remains as well as pacing wires and RA line.  We have weaned him off of the "strong"(etecrin) diuretic and started him on Lasix.  We will monitor through the weekend to see if he can maintain on his own with just the Lasix. IF he can then we will be able to forgo the heart cath and think about going home.  The collaterals are still present, but do not seem to be presenting any problems at this point considering he is drying up on his own with meds.  So we will leave them alone and I can monitor any changes from him in regards to those from home.  We will however, hopefully Monday, have his g tube replaced for a mickey button. Super stoked about that given that we have had the g tube hanging for far to long now.  As far as meds at this point. He is on lasix q 8 and he has to be on q 12 to leave.  The fewer doses of lasix the better because the more diuretics the more you flush out everything, including the good stuff like potassium and magnesium (which is what he has had replaced oh' so frequently that last 3 or 4 days). So we are safe on q12 not so safe on q8 and I don't need him bottoming out on those unbeknownst to me at home. He takes asprin daily and tylenol as needed. We did start him on Clindamycin today because there was some purulence at the left piggytail site. So we got antibiotics started to cover all our bases.  His blood pressure is still a little high so we may go home continuing on Enalapril for a bit until his body adjusts to his new circulation.  Other than that he looks AMAZING. He's pink, sassy and stubborn as ever.  He even got called a pretty princess by a nurse in the hallway when he was on his daily walk around the unit to build up his strength ( he was in head to toe blue just fyi) and when she realized he was not in fact a girl, she was so apologetic saying he was just so "pretty" she assumed he was a girl. He is pretty damn pretty, I give him that. Like perfectly pretty and everyone here is in love with him.

























Even when he screams "YOU STOP IT!" while pointing directly at the nurses trying to work on him, because he always adds a "pwease" to the end of it and we all melt to puddles.  Kid so knows what he's doing.  

I feel like home is close and it's like dangling a McDonald's diet coke in front of me at 7 a.m. , but not letting me touch it.  I want us to be home, reunited with our boys, so badly. Pax wants to be home and it shows.  Speaking of Pax, you all should have seen his face the first time we took his gown off and he saw all that was beneath it.  It was total shock when he looked down and saw his chest and belly. Broke my heart actually.  I told him Pax you have some boo boo's but they will be all better soon.  He now keeps them covered and protects them like a Mama bear with her cub.

I stared at him tonight with the knowledge that this 2 1/2 year long leg of our journey is coming to a close.  It's bittersweet.  I walked to the cafeteria tonight knowing that we won't, God willing, have nearly as many hospital visits anymore and life will resume to sorta normal.  He will still have a feeding tube and take meds, but we have nothing hanging over our heads for hopefully a long while.  He can feel better and get a stronger so he can keep up a bit more with his brothers and his friends. He won't spend his days cyanotic and panting anymore. He will never be a child with a healthy, whole heart, but he will feel better than he ever has and I have tears in my eyes for him that finally, finally he can be a "typical" almost 3 year old.  Whatever will I have to blog about now... Oh' don't y'all worry I will find plenty.  I am quietly watching the conclusion unfold before my eyes and it is breathtaking. Just as this entire journey has been.  

























Tomorrow morning is a good, good morning and there will be even better mornings to come shortly after that.  Oh' if I close my eyes I can smell home now.  Guess who's gonna blow through that door and light a candle and start a load of laundry with "our laundry smell" and wrap those boys in my arms and smother them in the kisses I have been aching to give them through every picture sent my way.  Home sweet home~ we are coming!!!!!



Love and hugs~
j


ps I want to mention that I have received so many emails, facebook messages, blog comments and messages about us through friends that they have shared with me.  I can't thank you all enough for your kind words.  I write because not only does it help me to deal and heal, but I want his story to help others on this journey. I also hope that it helps those who aren't as well. I hope that those of us going through it and seeing things from a side of life that is so fragile you spend far to many moments holding your breath waiting for the bottom to fall out. Well, I hope we are able to show those who don't have to, that life is an insanely precious gift.  The endless comments and letters I have received, and I read each and every one of them, bring such happiness to my heart. They make me want to sit down and share more because I see that this is opening eyes and hearts to a side of life that can change a person if you allow it. I want everyone to know this side of life.  So thank you for taking time to share with me that my therapy is helping you.  I am just lil' ole' me telling a big, big story for the most amazing little boy! I am his voice. This is Paxtons story, I am just his vessel and what an honor that is.  Dear friends, I rest my insanely tired head tonight so full of emotion, motivation and love because all of you stood by us, some I know, so many that I don't know, and rallied around our family.  You prayed and uplifted and while it may seem little to you, its huge to me.  So, thank you.  For reminding me what I should do with this story we have been living.... I can do it now and I know with all of you behind me that I will.  For Paxton and for those just beginning.  

Wednesday, March 21, 2012

The View From Here...


This here is how we spend our days....me smooshed at one end of the bed and him at the other.  To tired to write tonight, so I am going to go to my end .  See y'all on the flip side.


Love and hugs~
j

Party Of Five

Today is the first Pax and I are alone.  You know, the "dynamic duo".





There is something incredibly deep and special about a mother and her son, but a mother and her sick son...oh' it is more powerful than you can imagine.  Today was a day of many, small, but celebrated milestones here in CVICU.  You can't really do big again after rocking out open heart surgery like you owned the joint.  So now the two of us who both feel so very, very far from home, who's hearts ache with the need to be reunited with the other halves of our whole, we cling to each other until we are back with the others.   Our party of five is down two crew members and we all feel it.








































I walked to the cafeteria this afternoon and really thought about this life. You know, hospital life.  I have lived it a lot over 2 1/2 years.  You walk outside after being inside for so long and it's like being reborn.  Something as simple as walking. outside. is kinda epic.  I have been outside once since I have been here.  I am desperate to get my feet in the sand and be drunk on ocean air.  I know my boy is too.  We want real life back, but the thing is, this is real life too.  Real, REAL life.  The part of life that stretches you and grows you in ways you didn't know you were capable of.  The part of life I thought "I got" until I was the one in it.  Is it weird to say that I am so f ing grateful for it?

Not only because I now have 3 of the most gorgeous, kind boys ever, but because without this journey I would just be.  With this journey, I am. I do.  I go. I reach. I stretch.
I take thousands of pictures just because I get it now.  It, being, this life and what we are supposed to do with it. So I eat up all the moments.  Not just the easy ones, but the hard and the in between too.  The gift of this journey has allowed me to find the smallest things, like "brotha" bathing my boy for the first time since surgery the most wonderful "job" in the world.  Or reading to my boys at night worth photographing. Or making friends with people who work tirelessly to care for my boy, because those people, they are moments too.  And I am pretty sure in the end, our journey teaches them moments just the same.




My friend joked about me and my "glass always full"in a text once. I replied oh' trust me I have my days, my moments, my weeks.  Even here in this hospital surrounded by life, death and the in between, I have my moments.   So while my glass surely isn't always full, I am just as human and bit*%y as the next person, I do wear my "special needs glasses" full time and with those glasses comes the comprehensibility that we can choose how we spend our lives.  Looking back and questioning up or looking forward and trusting up.  I choose the latter, even in the scariest, saddest and maddest of times I don't ask why.  I have three amazing little boys, one with special needs, but amazing just the same. Paxton in the grand scheme of things has stomped all over HLHS and said I don't think so. We are truly lucky.




So, we have to be apart and it hurts, like really really hurts, but it makes home so much sweeter.  You know that silly old saying you never know what you have... well we have a party of 3 waiting on us to bust out of here and you can bet, oh yes you can bet, we will take this journey, all its pain, its fear, its hardships and tuck them away for that random silly day when something completely unimportant sends us into a tissy. It is then we will remember that it ain't so bad after all.  Choose people! Choose how you will wake up tomorrow because I sit here on the 5th floor of a Children's Hospital and I just know life is a blazin' out there and people aren't slowing down enough to read to their kids, to take that silly photograph, to talk to the person that is beside you or to shut down and go fishing with your kids. 






































Choose because you can, because it is a gift some aren't given. I choose while I sit here, sometimes in tears, sometimes otherwise to know that we will come out of this stronger and wiser. When I want nothing more than for Pax to fall asleep so that I too can close my eyes for a not long enough moment, I know deep down, this too shall pass and he will fall asleep and he will look at me with those eyes and all will be right with the world. Even in here. You know why...because we aren't the ones down the hall saying good bye.  Every day that I don't ever have to do that is a day to let the tears shed if need be, but to celebrate all of these very blessed moments. Join me won't you...

























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Medical Update For My Heart Mamas:

Paxton is 5 days post Fontan operation.  His heart rate is still adjusting to his new circulation so while a bit high around 120's when awake he is resting at 95 or so.  His sats are....wait for it....90-93!  He isn't cyanotic around his mouth anymore. His feet and nail beds are pink.  I want to bust out my canon and zoom in on those piggys to prove it, but all I have is my phone for now. He remains on iv fluids, etecrin, potassium (due to diuretics) and toridol prn.  He is having some lung issues.  His right lung is full of fluid, today no worse no better, and after a sedated contrast CT scan we know that he has collaterals that need to be coiled off to stop this from happening.  He did have a heart cath done 2 1/2 weeks prior to surgery that showed no collaterals, or none big enough for coiling, I am told, it is very common post Fontan for the collats to become exacerbated due to the complete rewiring of his system.  We are currently trying to dry him up with lots diuretics.  Holy pee batman!  He had the mediastinal chest tube pulled yesterday and his two piggytails remain.  His pacing wires are still in place and so is his RA (right atrial) line.  We will be going to for cath Thursday or Friday as of this morning.  We will continue to x-ray daily until then.  Once we get this fluid under control hopefully we can start looking toward the H word ; ) Today he sat in his big boy chair, walked further than he has thus far but only with me in front of him as bait otherwise he plops his butt right on the floor and says "  I wanna hold you" meaning pick me the frig up.  He also got his first sponge bath, courtesy of Mommy, since surgery today.  Kid was RIPE I tell you!  So we have a little setback on our plate, but in the grand scheme of his whole entire bada%* HLHS history, this bump in the road is kind of like our hazing. We have had it to good this far not to pay our dues now. It's all in how you look at it.... Thank you to all of the heart moms who contact me via email.  I try to update with medical mom version jargon so that when it is your turn you have a moms beside view to go off of.  Heart hugs from Pax and I!

Monday, March 19, 2012

Shut Eye

I have always said no sleep is a legit form of torture.  I would like to reiterate that.  It's only been 5 days, but 5 days in an ICU with a toddler is beyond a full time job.  Then there's Paxton who is "still attached to the umbilical cord" according to my husband.  This makes it twice the work. I can't even pee without him screaming for me. So I pee in the room with the door open and in walks the nurse.  Eh' what the frig ever. Who cares at this point. I just know that Pax and I need some serious shut eye. It's nearing 11:30 and we are both still up.  Mind you we get woken up throughout the night for whatever med he is due for, then come 5 a.m. on the money in comes xray.  I can barely keep my eyes open right now.  I can barely keep my eyes open all day actually. This last month is catching up with me. Scratch that, these past two years are catching up with me.  I went to shower and brush my teeth for the first time today at Ronald McDonald (y'all should put your change in there at Mcdonalds when you get your daily diet cokes, cause its for peeps like me, oh' wait not everyone goes first thing in the morning for a diet coke...whatchoosay?) at FOUR PM, yes 4 pm.  I'm sexy and I know it.
I can't break away from the cobra unless he's sleeping and today was a loong day so 4 pm it was.  I can stink and wear the same clothes if that's what he wants...wait, demands. I didn't after all just have open heart surgery, so he kinda calls the shots around here.

Paxton is having some post surgery lung issues.  His right lung has progressively gotten worse the last 3 days with fluid filling in it. This morning, which is why I couldn't break away sooner to groom myself, was a sedated contrast CT to determine where the fluid is coming from. He's still really wet this far out and his edecrin (a diuretic, the big gun one I hear) isn't quite cutting it.  It has been determined that Pax has some collaterals in there that may need to be coiled off. Why these weren't seen on his previous cath I am still unsure of. That is why a pre fontan cath is performed.... I am hoping to get answers to these questions tomorrow. Today I spent a great part of the morning in tears, because, well because.... I stunk, I miss my boys and Pax was NPO at midnight and was up from 2 am on begging and I mean begging for water.  He was NPO for 10 hours. It was hell. on. earth.  Ok a little dramatic, but it was bad enough to have me crying in Paxtons bed this morning.
Austin and Mason both caught their first fishes today with Daddy in our lake.  He was recording how Austin had finally learned to cast his line and low and behold, he caught his fist fish on camera. It hurt so good to see.
I believe baby boy is out which means I have, have, have to follow suit so that I can be on my A game, erh....lets go more with C game, for my main man tomorrow. I could write all night, but I have to check out for now.  Wanted to update my peeps/prayer warriors of course.  Paxton, while sleep deprived and highly, highly annoyed at being touched by anyone other than me, is keeping keepin' on.  He has his moments, but rallies with a sly smile just when I think the sh*% is about to hit the fan.  His resilience could teach us all a lot!






































Mother of the year award goes to.... ME for falling asleep with one butt cheek hanging off the bed while the patient is still awake!  Pax looks all kinds of protective over me though. The whatrulookingat look to my SIL who so kindly took this mother of the year award picture!
Night night friends. I will update after rounds tomorrow. Ok lets be real, I will update same time, same place tomorrow.

Love and hugs~
j

Saturday, March 17, 2012

Busy Getting Stronger...

I haven't written because I haven't been able to because I have this amazing little boy who is doing so awesome and needs his Mommy every minute of the day.





























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I am all and by all I mean, ALL, he wants. Which is the most, and by most, I mean, MOST, wonderful feeling there is in the entire freaking world! 
He has called out my name approximately 3,678 times since he has come out of anesthesia and it is music to my ears, absolutely the most beautiful sound ever. I am not sure everyone around us thinks so, but oh' is it ever.

the fist time i got to hold my boy post op






































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Paxton's surgery could not have gone any better. He has now rocked the Norwood, The Glenn and The Fontan.  All 3 are behind us. History.  He did it!  





































I remember sitting at the table 31 weeks pregnant watching the doctor draw diagrams telling us what three surgeries this "fetus" would require to live and here we are.  Can I get a Whoot! Whoot!  2 1/2 years later!  Oh dear lord!!!! So many emotions! SO much to sort through still!  So much to process!  It is all still marinating and I am letting it. I am not trying to work through it. Not rushing it. This will take some time and a lot of writing. This is where the book will come in.  This is why I don't think I could begin because I never knew the end.  I can start now.  I don't even have words, and that is saying something, to tell you the way that my heart feels write now.  To express to you all as I sit here on old reliable, you know that ole' vinyl couch here at ACH, looking across at my sleeping boy post op, alive and doing well, how I feel.  This has been 2 1/2 years in the making.  2 1/2 years of living in fear. Of never knowing how this would play out. Of never knowing the final chapter.  I still don't know how long these surgeries will ultimately last for him, but that's not what we are focusing on. We are focusing on the endless hurdles we have bulldozed over and in their wake is this:


So while I haven't been able to update as much as I would like and you know all of this has left me with much to say, but my boy comes first so my endless chatter will have to wait.

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In the meantime we're busy eating. French fries of course, a West favorite all around.


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We're busy walking. Mind you, this boy walked 24 hours post op as shown below in the video. I would like all of you to redefine your definition of tough because I sure have.


mommy pride at its best
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We're busy loving and being grateful that we can


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And in the words of Sara Evans:
We're Busy Getting Stronger....


Love and hugs~
j

For the heart moms out there:
Fontan surgery took 4 hours:
He came out with a central line, art line, ra line, 3 chest tubes (our surgeon always puts piggytails in as a precaution so he doesn't have to go back in after, I am so down with this thinking) pacing wires, foley cath, various iv's. He was sedated throughout the night the first night and into the next morning. Mid day next day, just 24 hours post op, central and art lines were pulled. Foley was pulled. Milrinone dc'd. He was allowed to drink.  They wanted him to walk to allow the fluid to drain down and out his chest tubes and while painful, my little tough guy walked about 10 step further out the door than most do the first time. He continues to blow my mind hour by hour with his resilience and strength. Today, his chest x-ray shows he is still really wet so chest tubes will remain and we are most likely going to add another diuretic to his already q 6 lasix in an effort to get all that fluid off. Possibly pull big chest tube and leave piggytails...still unsure on that at this point due to amount of drainage still coming off.  We want none.

Check out his pink foot!  We no longer have a "blue baby" anymore!!!!!!
To an HLHS parent this is EPIC!


My other two angels:

They are amazing and being such big boys about my being gone. They are explaining to everyone where I am and what is happening to their baby brother. "How his heart is getting fixed" and "how he won't hurt anymore".  My heart physically hurts with missing them, but I know one day they will understand it all!


Thursday, March 15, 2012

And he's off

Paxton is out of surgery and recovering. He is heavily sedated as of now, but all went well and doctors are happy with the repair. God is good! Prayers were answered. Today is a damn good, beautiful day. I will update more later. Thank you all for walking this journey beside us !

Update 8:10 am. Just got call they have made the first incision and are working through scar tissue now. He is stable and doing awesome.

7:20 am They have taken Paxton back to the OR. I will update when I know more. Please pray for my boy.
~j

Wednesday, March 14, 2012

Surgery Update

Paxton is on the books for 7 a.m.surgery tomorrow morning. I will update you all as news arises. Thank you for the prayers and gentle reminders that God is in control here. We are now shacked up in our old stomping grounds; Ronald McDonald House! Today we caught up on naps and cuddle time. I am going to check out early tonight, well early for me anyway, say hello to my li-le friend ny-quil and try to rest because I am guessing if all goes as planned tomorrow there will be little time for it in the coming days. Again, I am humbled by each and every one of you near and far for your kindness and love. I will rest my head tonight enveloped in a peace only all of you (ok and ny-quil ;) can provide. My baby boy is wrapped in prayer and support so thick it gives me goosebumps. For that, I thank you all. I know that life goes on outside this hospital so all of you taking the time to reach out to us in the midst of your busy lives to lift us up, to send messages and meals and offer to do anything at any time means more than you know.

On that note I leave you with my all time favorite quote:

You never know how strong you are until being strong is the only choice you have...


Love and hugs~
j

Ps pics coming, you all know I despise a post without pics. Stupid iPad. Laptop is en route and then y'all can see those gorgeous baby blues again ;)

Postponed

No sooner are we admitted and in a gown than we are released. Paxton's surgeon was in emergency surgery with a Norwood baby all night and did not feel comfortable operating on Paxton. For that I am grateful. While I felt deflated for having to wait another day I knew it was for good reason. Patience is one of the many traits I have become quite accustomed to since having Paxton. Endless hours in the hospital will teach you that whether you like it or not. So we wait another day. My heart goes out to the family that was up all night with their newborn baby in emergency surgery and my heart thanks our amazing surgeon yet again for being ever so cautious with my sons life. Please continue with the prayers for Paxton! Tomorrow we make that last jump! Tomorrow, God willing, is his turn. Tomorrow starts a new chapter. I am told we are first on the list just as we were today. I will keep you updated as we hear anything.
love and hugs
~j

Tuesday, March 13, 2012

There's No Turning Back Now

We are holed up in a hotel here in St. Pete. Daddy and Pax are sound asleep and I am not, shocking I know. At this point I am just ready to do this. To "get er' done" as they say. I want it to be tomorrow night at this time. Then again I wanted it to be tonight a mere six days ago and here we are in the blink of an eye. In spite of pre op we had an amazing day together. The older two boys were absolute gems upon leaving this morning and there could not have been a better gift for Mommy.


Paxton endured all of his tests today like the trooper he has alwayS been. We are primed and ready for surgery first thing tomorrow. He is first on the list at 7 am. We are told it is expected that it will take around 5 hours to complete. 5 long, hellacious hours of waiting and praying. How can time go so quickly one moment and so utterly slow the next... this I will never understand.


What I learned again today, more than ever, is just how much Paxton touches people. There are people near and far reaching out to us. From literally all over the United States, Europe and Britain of course adding Pax to prayer chains, wearing his Praying for Paxton bracelets, sending emails, leaving comments, whatever the case may be, but nonetheless honoring a 2 1/2 year old boy who has zero idea how much he has inspired people in his young little life. I took tons of pictures today, they will not post for some reason tonight. I am to exhausted to fight it so bear with me through this hurdle.

What I love though is in the midst of all his testing and needlepokes in preparation for tomorrow, he keeps his spirit. Oh' how proud he makes me. How my heart swelled today reading post after post. Comment after comment be it facebook, my phone, this blog or my email. There is no "hatin" technology today folks for it brings people, friends and family together in a time of desperate need to be close. It allows you all to hold me up when there are moments I am not sure I can stand and those comments, they are the hand on my back. You may not realize that when you leave them, but I will be damned if they are not. You all remind me how strong my Pax is and if he can be that strong then, so too can I. Thank you to each and every single one of you that took time out of your lives to pray for ours. You will never know how much it means to us. Truly. You will never know.

Tomorrow is a big, BIG day. I will keep you all updated as news arises in quick spurts and when things settle I will post more. It's going to be tough for a bit. I am told he may have to be tied down for awhile and that will be hard on the mommy heart and I will have a lot of consoling to do so I will be back and forth as I can be, but of course my man comes first. Again from the depths of my soul, thank you all so very much for wrapping us in this love and prayer. It is overwhelming. I cannot wait for the one fine day when I can sit Paxton down and show him how truly awesome he is to so many people. Thank you all for loving him as I do. He is going to do great things here I promise you that peeps. I am off to snuggle him, wire, drain, cord free for the few hours I have left.

love and hugs~
j

Monday, March 12, 2012

Game On Peeps....


This is the favorite picture of my boy...its speaks to me. It reperesents.  Each one of those pilings behind him in the picture is a procedure he had to overcome in his young little life. Be it one of the many thousands of needle pokes all over his body, the surgeries for feeding tubes, the sedated echos, the open heart surgeries, the hospitalizations for uti's or hand mouth foot viruses. The list my friends, goes on, but my hero fought and jumped from piling to piling with a fight I have never seen.  Today we are teetering on one last big piling.  We are about to make one last big jump for awhile. I come to you near and far this morning asking you to begin the prayers for my boy. I am literally shaking from head to toe as I type this.  I am going to be handing my son over in less than 48 hours for open heart surgery again and I am scared to the very core of my being.  The hot tears will not stop flowing. Wherever you are the moment you read this please, I beg of you to stop and pray for my  Paxton. He is truly a work of God and as I have said so many times before I just know in my heart of hearts that he is here to do great things for Him, but that does not stifle my fear.  

Send me messages, pictures, whatever you would like.  Show me how you are lifting him up!  I will share with him each and every way that he is being honored when he is well enough.  He will know one day that he is a hero.  I document this so that he knows his struggle is not in vein.  The wall in his room is covered in your support!  He knows he is loved and as he continues the last leg of his journey (for now) keep it coming my peeps, you have never let him down and the power of prayer has certainly gotten him this far!!! 



Also I finally got new bracelets in. I have had requests foreverrrrr. I am sorry it has taken so long!  If you would like one, email or message me and I will make sure sister gets one out to you asap~ ; )




Show me what you got peeps!!!!! 
I will keep you updated I pinky promise.

true love...




Love and hugs~
j

Wednesday, March 7, 2012

T-minus 6 days and stream of consciousness

I don't talk on the phone. Ever. I hate it. Despise it. You are pretty awesome/important/something earth shattering better be happening if you hear my voice on the other end of that line. I don't know why people call me, ever.  If you need me, your very best bet is to text me first saying hey dude-emergency, answer your stupid phone and guess what... I would, because I would get the text long before I ever even so much as looked at my voicemail list let alone listened.  I would even go so far as to say I might get a letter in snail mail before I heard a message on my voicemail. Don't judge it's my thing ok. You have yours and I have mine.  Which leads me to today.  I like to think I am semi smart at times and apparently what little brain I do have in there caught up with the rest of me and thought hey...your son is having open heart surgery next week maybe you should check your voicemails to see if any of the oh...I don't know... nurses, hospitals or doctors may have called you idiot.  And guess what...low and behold the surgeons nurse had called to bump UP his surgery.  Awesome Jenn. You. are. awesome.
Needless to say consider yourself warned peeps and I now know that All Childrens Hospital does not text regarding surgery but honest to God they do text to remind you of your appointments. So see I am not that far off people.

Surgery is now the 14th of March.  Pre op is March 13th. I leave my boys a little sooner than I anticipated.  I had a panic attack about that in Publix today. Must they play that old, sappy music that makes me not able to breathe. I wanted to find the manager, shake him, saying some of us have some serious sh*% going down in t-minus 6, not even 7 anymore, days, can you cut the celine dion and get me some P-Diddy up in here!

True Story, after we lost Tadem I could not handle anything and I mean any-thing but hard core rap. My love of country and soft rock had to go bye bye for awhile, actually it kind of still does set to the wayside a bit for obvious reasons.  There is nothing sad, sappy or depressing about Akon talking about "smacking that" or "applebottom jeans, boots with the fur". It's true right.  You can't be sad listening to that crap.  And it. is. crap. But girlfriend can drop it likes its hot and I can't wait to be on the other side of this doing just that in a celebratory dance like no one has ever seen.

I love stream of conscious posts. Sadly this is how my brain works all day long. I just pull it together for all of you ; ) I  am a mess. I melted last night, bad and I probably will again tomorrow too. But tonight there is a sliver of the real me present and man does it feel good. The Jenn that jokes and picks. That finds it ever so much easier to be funny than to be scared.  If you can't beat em' join em.  I am trying to join em'. I have no idea how I will be tomorrow, but for tonight I am eating cake in bed, my thighs are thanking me as I type this.  I am smiling. I am peaceful.  I forgot my damn Sunpass again at Publix.  Saw it walking in and forgot it. Ugh!  I have made the trip over the Sunshine Skyway bridge approximately 1,476 times now to and from that children's hospital in 2 1/2 years and I have yet to get a damn pass.  For the love of all things holy someone get me one and bill me please.  You all probably think I am drinking or am on happy pills. I am not.  Imagine if I was.  I am just me tonight and me is good.  I asked, begged actually,  for a break from the load that I was carrying. I let go of some of the worries on my mind this afternoon and in doing so I feel freer.  I spent the hour that Austin was in therapy with my Mason at Florida Motorsports watching him hop from four wheeler to four wheeler in complete enthrallment.  My heart was overflowing with Mommy love.



I am so head over heels in love with my boys and I am so so so blessed to have three of the most kind, sweet boys to walk this planet my own.  I laid with Mason tonight and explained to him that Mommy will be leaving soon and why.  It was hard. He asked who would be taking care of him when I was gone and he asked why he couldn't go with me.  I did the very best that I could to explain it all to him, to remind him how much I love him and to reiterate over and over that Mommy always comes back.  This journey is bittersweet.  It adds a tenderness to the boys and my relationship that I am not sure would be there otherwise.  They get it on a level most children cannot. They asked Mrs. "Bef" at pick up today over and over where I was when typically all they care about is going to her house to play.  We are united together, the boys and I right now.  We all sense what is coming and we are enjoying every single minute that we have together.  I promised them a sleepover on Friday night and quite frankly I don't know who is more excited, them or me.  I will miss them so deeply it will physically hurt me.  It's not like going on vacation.  When you are in that type of environment all one wants to do is lay in bed intertwined in her children at home where all is right with the world. I will not be able to do that. I will have to comfort my youngest baby however I can in a hospital room far from home and my heart will ache to be right back here in this bed having a sleep over with my babes all over again. They're like food for my soul.



I am going to sign off for tonight I have to go be tooth fairy (SHHHHH!) don't say anything! Yep my golden boy lost his very first tooth and I got to be here for it by a matter of days. I am so grateful.



Dave and I fought (not literally ;) over how much she should bring him and he's clearly a bit jealous of the new age tooth fairy. I explained to him that things have changed since back in the dinosaur days when he lost his first tooth.  He didn't seem to think that was funny and then he made me seal the envelope because he knew I would go back and sneak more in there for him.  This coming from the same guy who gave each boy $ 1 and said go have fun at Target with Mommy.  I was all like "wait one minute there Daddy-o, what do you think that's going to get them at Target" cause we all know that no one and I mean no one (except Chrissy B.) can go into a Target store and walk out without having dropped a hundo easily.  Its Target people.  Ask Paxton. He will tell you. When he is getting an iv or any sort of horrible thing done to him and I have to hold him down that's when I try and distract him by asking where do you want to go, what do you want to do, you can have whatever you want and I mean it. I swear if the kid said a Range Rover I would go and get him one. K, maybe that's for me, but that's beside the point ;)
Annnnyway, when I ask him he will flat out, clear as day say "I wanna go to Target!" and all the nurses proceed to crack up and then look at me like what have you done.  And then I feign...all like what... I didn't do anything.  I have my vices~ my boys, my starbucks cups, my mcdonalds diet cokes, writing, french fries and of course TARGET. Eh' could be worse right.

I am off to be the tooth fairy!!! Night all. Pray for Pax!  We are T- MINUS 6 DAYS!  Unless of course they call and bump it up again to which I WILL be checking my messages between now and then, but don't y'all try calling, this doesn't mean I will actually answer it means I will check my messages and only until Tuesday ; ) then I am off the clock~

lots of love and hugs~
j

Tuesday, March 6, 2012

Overkill

I might be on the very "a-noy-ying!"side of my kids right now.  Yes, my 4 going on 40 year old knows the meaning of that word and I am guessing there are times he wants to maybe use it on me because right now I am all over them like flys on sh*# (awesome visual, I know) We skipped school again and I likened it to the fact that Austin was sick yesterday and needed the extra day to recover and of course Mason needed to stay home and join in on the lovin' too because look at what he wished for yesterday in school.  I seriously have the kindest kids ever.



Today we stayed in our jams all morning long and just around lunch time we decided to meander out into the real world, but not to far, just around the neighborhood on our bikes.  Just the four of us.  It is one of those picture perfect days where everyone has their windows open and all I can think of is being backside on a beach somewhere.  I really, really want a vaca soon.  Cause that's gonna happen ; ) In this moment, as I sit here staring out at this beautiful day, three little boys tucked in for naps (1, 2, & 3 sleeping = miracle) all is right with the world.  It ebbs and it flows just as this journey ebbs and flows and today it's flowing and for that I am grateful. 

I was thinking that I don't want them to grow up and "be big" I desperately miss the days of no school and not having to be anywhere.  When we got to wake up and wander through the days letting our imaginations lead us wherever they may.  Today on our bike ride with a complete disregard for anywhere to be at any given time, I sadly realized I am just not ready to let those/these days go.


I am kind of hibernating right now.  I don't want to leave the house.  Want to hunker down in my not sterile house. I light candles first thing in the morning and open windows and smell the fresh air because next week I get to sit on vinyl couches and breathe the ever so refreshing scent of hospital. Awesome. I can tell you this though, no one has ever appreciated home and candles and open windows more than a hospital mom. Absence makes the heart grow fonder... and ain't that the damn truth.

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Last night was my Dad's cross country banquet.  It is quite the event as well as extremely emotional and heartfelt.  My dad was recognized on a state and national level for his coaching.  Dudes got skills I tell ya.  I couldn't have been more proud!  I have always been proud to be his daughter. He has always been the type of guy that people just love.  In high school (I wasn't zoned for the high school where dad taught, but went anyway so I could be closer to him) My name wasn't Jennie Sommer,  it was "Coach's daughter" and I loved it. I was proud.


He made people smile and laugh. He is a good man that has and continues to help and inspire kids throughout their lives and they go on to be awesome people.  Not a lot of people can say that.  He had an entire room of kids, parents and family there to celebrate not only him, but their kids and the accomplishments they reach together.  They get up at 4:30 a.m. to train from 5 to 6 a.m. 5 days a week. We are talking about high school kids here. Kids with 3.5 GPA's to boot.  It is extraordinary to witness the dedication the envelops that team.
So,  last year my dad, proud PaPaw, started an award called the Heart Award in honor of Paxton.  It is given to one boy and one girl runner every year that shows the most heart throughout the season on or off the course.  It is incredibly emotional to talk about and watching my dad try to choke through his words last year talking about Paxton was so very hard.  This year he asked my sister and I to present the award.


Here's the thing with me and this whole situation, I don't cry when I am "supposed" to. I cry when I least expect it. I cry at all the wrong times. I stood up last night and talked about my son and probably had the driest eye in the house.  I presume people probably didn't understand why, but again auto pilot is an awesome gift I was given when Paxton was born.  I explained what Paxton had and I explained to each of those kids in that room that they and they alone choose their lives and they can wake up and choose to have a great day or not, but that there are children out there that aren't given that choice.  Those teenagers, wise beyond their years, moved me in a way they will never know.  They were weeping for my boy.  It was quite breathtaking to see.  I hope that they walk away from our journey with the knowledge that they are in the words of whiz khalifa "young, wild and free" and that they relish that.  The two runners that received the Paxton heart award were runners who have both lost their fathers.  Again, on or off the course. It's about life and handling what it throws at you. That, is true heart~ half, whole or otherwise.


Today I am no longer "Coach's daughter" near as much as I am "Paxton's mom"  and again I could not be more proud to have any other name. I am continually blessed with these amazing men in my life. These strong men that continue to overcome tragedy, heartbreak, illness and suffering.  Guess it's in the genes.  We may have our bad days, but we Wests/Sommers don't dwell on it. We "hit the curve balls". Man I can remember thinking I was having a bad day in high school and my dad would say that to me over and over again. Or he would say to me, you have nothing to complain about, you aren't sitting in a hospital sick. Go take a walk around a children's hospital and you won't come out thinking the same way you are right now.  It's true.  SO very, very true. Little did my Dad know, way back then what he was preparing me for today, for next week.  I will be walking in a children's hospital next week and I always walk out a little more changed than when I went in. I always see something different than I did the last time. Someone sobbing in the hallway. A bedside surrounded by doctors and you know what is happening. The ecmo machine being set up down the hall.  A children's hospital no less.  It changes you. Stirs your soul in a way you simply did not know was possible.  As a mother you cannot help but to put yourself in that persons shoes.  It changes you. Forever.

I believe in ways far better than meets the eye.  I choose to learn from those lessons that I see in those hallways. I choose to leave that hospital, look up to the sky and drop to my knees in thanks that today it was not us.  And I hope beyond hope I get to do that again. I choose to let the little things go because they are just that~little.  I choose to cling a little tighter.  I choose to remember that it is short yes, but it is so very, very sweet.  So while a little overkill might be a little "anoy-ying" to little boys, once nightfall comes around and all they want is mommy to lay with them I know its really not annoying at all.






~love and hugs
j

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