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