Thursday, July 29, 2010

We Are Outta Here

So as you all know, we have had a crazy year.  We were supposed to go see friends in New Jersey, had flights booked, however Paxton had other plans for us and we did not make it due to his infection/hospital stay.  We have postponed plane trips to Christmas, but my honey decided to book us a gorgeous place in the Keys.  I am so excited for our "acation" and so are the boys. It's just a long weekend away, but man do we need it. We will walk out our back door and the boys can play on the beach and swim all day. That's is really all they need to keep them happy as ever. Simple little guys my boys are.  I am excited to get away as a family.

Hopefully upon our return, things will be back to normal and I can get back into my updates. I miss being able to write. I miss not being able to sit down and leave it all on the screen. Every day I am thinking of all I want to write, but time slips away and I won't let that take away from my boys or what little sleep I do get at this point.

I can't wait to share our weekend, until then ya'll have a good one!

~J

Tuesday, July 27, 2010

F.I.N.A.L.L.Y

I truly apologize it has taken me this long to post.  Ever since Paxton went into the hospital, life has been ultra crazy around here.

We are home now and Paxton is feeling much better. In a nut shell, Paxton had a urinary tract infection which in turn caused him to spike a fever of 104.7.  We took him to our local emergency room here where he was admitted and went through bouts of turning blue and shaking from head to toe each time his fever spiked.



After two days here locally, his cardiologists decided to transfer him to All Childrens Hospital in St. Pete where he could be better monitored by those who know his condition better.

I was pretty emotional from fear and lack of sleep. I melted the day I was told I had an hour to gather some things before the transport team from the childrens hospital would be there to transport us.  I didn't want to leave my husband and my boys again. I didn't want to be separated again, but I did what I had to do and off we went.



Paxton was such a rock star. He was poked oh' so many times. HIs veins are shot and sticking him is hard. My heart broke for him as I watched them put one in his scalp at one point.  He has been through so much to this point, but his heart doesn't have the reserves to fight off a simple urinary infection.




Since being discharged I have been soaking it up here at home with ALL of my children.  We have had several doctors appointments and even just returned today from a recheck in St. Pete. 
Pax checked out perfect!  He is off two of his big cardiac meds and for the biggest news, I am happy to report that Paxton no longer has his feeding tube!!!!!
He takes all of his medications and feeds by mouth!




He weighs 20 lbs at just under nine months. Can sit almost unassisted. Has 10 teeth.  Eats big boy food like pierogies, turkey, goldfishies and the likes.  He has just recently moved to his own crib in his own room. I finally at nine months decorated my sons nursery, it was emotional because I can remember sitting in that room very pregnant after I found out he was sick wondering if I would ever be given the chance to actually decorate it. He happens to LOVE his room and sleeps better in there than he ever did in our room.  He still gets up 2 to 3 times a night (grrr!) but he puts himself to sleep on his own and when he is down, he sleeps well.

There are days where I am unsure there is a light at the end of this broken sleep tunnel. There are days the tears spill over for normalcy, but then I read about another HLHS baby gaining her wings and I realize that I will continue to fight this fight for however long if it means I get to keep the most amazing little boy in the world.

Thank you to everyone who has given a helping hand and words of encouragement.  BIG thanks you's to my family for staying at the house and helping Dave with the boys!  ULTRA big thanks to Maxine and Kimmie who dropped everything when Paxton was admitted to take care of the boys, take care of me, bring me food and LOTS of caffeine.
Last, but most certainly not least, thank you Morgan for jumping in your car the moment you heard we were out of here to follow right behind the ambulance to be there for us all the days we were in the hospital.  I am pretty sure the boys think you actually ARE "my sister" after all we look "sooo much alike."

In between the surprise illness we have actually been having an awesome Summer.  I have tons and tons of pictures to share and I will do that tomorrow.  For now, I just wanted to catch you all up on Paxton.

To date this has been the only "incident" between two open heart surgeries.  That is amazing according to his doctors.  He is amazing according to his doctors and according to the nurses at All Childrens Hospital, Paxton is the new "McDreamy" with his gorgeous eyes.


Time and again, he makes me proud.  I can only hope I do the same for him!


Love~J

Friday, July 16, 2010

Holy Moly

Sorry it has been so long. Once again we are being tested and doing our best to pass. Paxton has now been admitted to his second hospital in 2 days. He woke from a nap Wednesday evening with a fever of 103. We immediately took him to the emergency room. Super long story short we were transported via ambulance two hours away today. It has been a long week of very little sleep so the details will have to wait. As of now Pax is stable, afebrile but on oxygen. He is finally getting a little rest and we will discuss a plan of action with doctors in the morning to see how we at are going to proceed. Please pray for Paxton and for us to make it home very soon. He is truly the bravest boy ever. I will update tomorrow after we both hopefully get some shut eye!

Monday, July 12, 2010

Checking In

Boy do I have so much to share, unfortunately I have a little man named Paxton that is going through some rough spots right now. For one, he has thrush and it's making him very uncomfortable and sore. Two, this HLHS baby does NOT sleep. As in ever! Maybe an hour or two at a time all night and same goes for the day. We are all feeling the affects of this, including Pacxton whom I just got down to sleep, in his swing I might add. Desperate we are over here! : ) Even still I have managed to still drag myself to work out at 5 am and try to do something fun with the older two boys every day! Let me tell you it's been fun and I have oh' so many pictures I am dying to share! I am hoping to get a good post up tomorrow so keep checking in and you all just wait for my next life with boys post, which I hope to have up very soon as it keeps getting longer and longer. You are sure to pee yourselves!
Until then, y'all get some shut eye for a girl would ya!
~J
ps if any cardiac moms who read have any tips on sleep, do share. He can't cry it out bc its to stressful on his heart. He's upright, propped and pillowed. I have white noise. He gets mylicon, Zantac and Tylenol. I don't know what else....So any tips are appreciated.
Nighty night all--for an hour ; )

Tuesday, July 6, 2010

Happy Fourth

Oh' what a wonderful weekend we had, daily life put aside, just soaking each other in.  
It has been a long standing tradition in our family to pack up and have a staycation at the beach for the holiday.  
This year was no different.  Paxton and I returned just in time to unpack and pack again. 


To say the least, the boys were over the moon.  They are obsessed with swimming, running wild and most of all they are in love with staying at "hotowels"  They quickly learned that hotels mean vacations and time away from home.  So asking to go to the "hotowels" never ceases around here.  
















































(I just love this antiquey look to pictures, and yes I know that's not actually a word ;)

*************************


We spent time soaking up the sun, swimming and....




Snacking... (West family loves some grubbin')




































(Pretzel Firecrackers: Pretzel rods, tub of frosting and holiday themed sprinkles. Wala! Happy Kids)







Playing On The Beach (Or pouring sand on brothers head, but who needs details ; )






And when they could take no more, they literally passed out poolside. Have I mentioned how I want to come back as a West boy. The life~ oh' yes they do!



Well...some of us passed out.  Mr. No Sleep pretty much refused all weekend which explains the bags and intense need for way to sugary daquiris to keep me going!


And as the sun set on Americas celebration of freedom day, here was the view from our "hotowel" room


The boys waiting not so patiently to go see the fireworks only to realize...



Holy hell this is kinda scary.


So one hid in the stroller (i.e. the biggest, oldest child snagged that and yes the white on Austins face is his vitiligo, but he is so gorgeous he rocks it!)

One that had it written all over his face. "Mommy hold you!" That's what Mason says when he wants me to hold him. 


And one that very literally bugged out ; ) Boys got some eyes! On a side note, I am pretty sure glow sticks are non toxic....oh' heck, can't be that bad, he's as wide eyed and bushy tailed as ever. Ahem...still no sleep. Just sayin...


Mommy and Daddy weren't scared though, we were just happy as well...clams...on the beach with our babies surrounding us.   Again, I realized how very pregnant and oblivious I was last year at this time...
Just freaking amazing what can happen in a years time!


And just around the time the show was over our boys "manned up" enough to enjoy it.



(Thank you Morgans for loving our boys so!)


These are the days and they are priceless...


Wonder where we will be next Independence Day...

~J

Thursday, July 1, 2010

Buh Bye

What a week it's been. Easy for me to say since Paxton was the one who actually endured it. Really though, I seriously felt like he looked at me and said Mom this is nothing compared to two open heart surgeries.

                                                                         (Pre- Op)


                                                            (Post-Op- Holy Swollen Batman)


He spent at least 24 hours between the two days with no food in his belly and handled it like a man!  He had his old feeding tube removed through (gag) his throat and a new one put in. I mean people, there's a hole in his belly and you would think he had a mosquito bite. The kid could care less.  It's quite impressive!
So today we said a BUH and a BYE to his old peg g-tube!

                                                  (Ghetto bath at the hotel :)



And a HELLO to his brand new, shiny mickey button. No tube to try and pull out. Just a cute lil button now.



************************

Paxton and I missed out on a lot of the new mom/baby bonding time in the beginning. He spent more than the first sixty days of his life in a hospital bed.  There was no sleeping with Momma and snuggling. He was in his mini jail and I was at Ronald McDonald house, so as hard as this time away from his brothers is, I realize I am grateful for it because Paxton and I are catching up on our bonding.  When I see these pictures (some clearly i phone, some kick a*# canon) that we took together because we were well...bored in between hospital trips, I realize this little boy loves me so very much.  I know that while we may not have been able to snuggle in bed together, it's clear he knows that I have been the one person who has been there from day one through all of his struggles. This has bonded us more than I could have ever hoped for.  Today several people, nurses and a friend, tried to soothe him as we waited. He was tired, hungry and they all tried soothing him to sleep to no avail, but as soon as I took him he laid his head on my shoulder and went to sleep.  My heart swelled.




My sweet, sweet miracle boy!  I am so proud of you once again!  Whatever is put in your path you mow over like it's nothing. You win over the hearts of anyone that meets you and I sit with you on my lap, glowing and proud.

My cup runneth over Paxie!




~J

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