Our 1st month at home!

Hello everyone!!!!! I am sooo sorry it has taken me so long to blog again! Things have been VERY busy, but GREAT!!! I can't even describe to you that feeling when we were finally able to walk out of those hospital doors with Pearson.  Of course I was crying, but most of all I just wanted to savor the moment.  It was unlike any feeling I had ever had.  It was a day we had been dreaming of and it had finally come true. Every day we would arrive at the hospital to go be with Pearson we would always talk about the day when we got to leave that hospital as a family, so this was a much anticipated, very surreal moment. Pearson cried most of the way out of the hospital and the fresh air caught him by surprise.  His eyes were squinty from the bright day light and I can't even imagine what he was thinking.  The car ride home was good.  It was a little hectic just because not only was that the first time we were on our own and feeding him with his g-tube, but we were in a packed car as well. 

Pearson is adjusting so well to his new home. He came home weighing 8.6lb/22 inches and is now up to 9.14lb/23 inches. In between all of the visitors we have been trying to get him on some sort of schedule. He is eating 3 ounces every 3 hours through his g-tube and came home on 7 different medicines.  We definitely have our work cut out for us, but it is ALL worth it!!! He has been sleeping in his crib since the second night we were home....of course the first night I was dieing to snuggle with him so he slept with his mommy and daddy! He hasn't really been anywhere except some of our friends and families homes and to the doctor.  He is still on his oxygen 24/7 and being fed through his g-tube.  We work everyday on his oral feeding, but he absolutely hates anything in or around his mouth.  I've tried nursing and bottle feeding and he hates both. He was sucking a passy before we came home, but stopped about a week before we were discharged. When we try to feed him he wretches alot and often does it while he is getting fed through his tube as well. I guess that is just part of his terrible reflux and oral aversion.  It's tough to watch sometimes, because I know how frustrating and aggravated it must make him. We have tried giving him milk through a surrenge and he handled it okay.  He cried, but still was able to swallow without gagging the whole time.  He is seeing an occupational therapist for his feeding and right now she is just having us do some mouth exercises with him at home as we try to get him to associate positive things with his mouth, since everything else that he has ever had in his mouth has been very negative, such as the ventilator.   He will also be working with a physical therapist soon, although he doesn't seem to be too far behind where he should be at almost four months old. We have been to lots of doctors appts. just so the pediatrician can keep a close eye on him.  As you may also remember, right before we were discharged they found a clot in Pearson's right atrium. He is doing Heparin therapy to prevent the clot from getting any bigger.  He has a port in his leg that he receives 2 heparin shots in each day.  We have to change the port out once a week, which is one of the hardest things we have had to do since being home.  It is basically  like giving an IV, except you don't put it into a vein. We are really hoping that when we go back to Florida for all of his check ups in a couple of weeks that his clot will be gone so that we can stop with the shots.  We are really looking forward to going back to Florida as funny as that may sound since we only spent 4 months there.  We really miss all of our WONDERFUL nurses and plan to go see alot of them while we are down there.  They really became like family and we just thank God that Pearson had such loving and caring people to take care of him during the first part of his life.  We will forever cherish all of the memories and friendships we have made on this journey in Gainesville. We look forward to keeping in touch with alot of them, and one of these days I'm going to get a Facebook page so that it will be easier to do so! We love you guys in Gainesville and miss you tons!!!

Pearson does new things everyday and amazes us all the time.  He has discovered his tongue and is now discovering his hands.  It is the cutest thing watching him change and grow. He will just sit in his swing, which is his FAVORITE place to be, and stare at his hands like "are these really mine!" He is such a happy and strong little boy and brings so much happiness and joy to our lives.  We are having the best time being parents and feel so incredibly blessed to be at home with our precious angel. We still can't believe we are at home as a family.  There was a long period of time when we didn't know if this time would come and we are grateful for each day God gives us with our beautiful baby.  He is truly a miracle from our wonderful and almighty God!

Here are some pics from Pearson's first month at home!!!

Leaving the Hospital!!!!!!!!

Waiting on the curb while daddy gets the car!

I'm headed HOME!!!

Me and daddy slept in our first morning home!

My first doctor visit...

I LOVE my mobile!

My crib...

1st Stroller Ride

My favorite place to be....my swing!

I also love my playmat!

I'm starting to get used to baths, but they aren't my favorite!

I'm glad bath time is over!

I found my tongue!

Caught without my oxygen! (mommy was changing my cannulas) You can see his scar and g-tube in this pic.... for those of you who are curious as to what it looks like.  You can also see his port in his leg where he gets his shots.



Cindy, with Cynthia Sparks Photography, took these beautiful pictures of Pearson.  She is also the wonderful person who did the "Pictures for Pearson" benefit for us.  She does an amazing job!!!