at 7 am I watched my beautiful baby boy wheeled away from me.  I remember my eyes stinging from crying so hard and thinking, I have to be able to see him clearly, for it might be the last time.  I remember being so scared and uncertain of his future.  Today 6 months ago, my son received his gift of life.  A chance to be healthy.  A chance to grow up.  Tonight Carter is 10 feet away from me in his jumpy thingy.  He is jumping around and banging a toy very loudly against the side.  He just finished his dinner of green beans, sweet pototoes and carrots.  All by mouth.  He washed it down with formula from his sippy cup.  I couldn't have imagined this "normal' evening 6 months ago.  I'm not even sure I could see the next day then.  But the next day did come and the day after that.  Having a sick child changes everything.  Things that bug other people don't seem like a big deal anymore.  Of course, some things are a bigger deal.  All in all, I couldn't imagine our course any different.  Everyone we have met, every life we have prayed for.  There is a reason these horrible and difficult things happen to children like mine. 

Pause for a crying baby......

Ok, I'm back.  I don't really know the right words to say.  People always ask me if I ever thought this day would come and I always say yes, but the truth is, I couldn't really see it in my head.  Now I see it in my living room and it couldn't be better.  Today is also the day another family said goodbye to their child and we must not forget their scarifice and their loss.  I'm stealing Stacy's idea and tonight we will light a candle to honor their precious child and his memory.  Please know we remember everyday the amazing choice you made.

We also want to thank each of you on this special day.  You have read and prayed and written great words of encouragement.  We know we have never been alone on this journey.  I hope every family feels the love and support like we have from you. A special note to our families, who have worked so hard to make our lives easier.  Sean and I feel your prayers everyday! We love you and thank you.  We wouldn't have seen today become the reality it is without you!

So to everyone of our friends who is facing challenges, I pray your day comes very soon.  No matter how hard the fight is, it is worth every second.  Our kids are so worth it!!!  

 So, as the dishwasher needs loading, a load of clothes awaits in the dryer, I say goodnight and goodbye to our Transplant/Omegaven Journal.  Tomorrow starts a new day and as such we should start a NEW JOURNAL.  I will think about what to call it, but please follow Carter there.....

So, now it's been two weeks since we got on a plane to come home.  We are still adjusting to life at home.  It's not as easy as just unpacking, which I haven't finished either.  I have been able to relax a little more this week.  I am only staring at Carter for 23 hours a day now.  Baby steps ok! Now that we've been home for a short while, the thought of going back into the hospital makes my stomach turn.  We went on Monday to have labs.  It was lonely.... no Kaden, no Caitlin, no Kamin, Kim, Krawzcuk or Katie, no Courtney or Christine. We miss our friends and our team.  After labs, it was back to the house for elmo and applesauce.  Carter still likes to have me attached to his hip, which means I don't get anything done.  When my mom stays to help, he will sit in his swing, play in his pack and play, jump in his jump-a-roo. Big THANK YOU to Amy & Frank for the kick-butt jump-a-roo. He loves it!!! But when he sees me, he just holds up his arms to be picked up.  Not sure how to break either of us from that habit.

Tuesday wasn't as lonely as Monday. Mainly because at 3 am, Carter decided he didn't need that GJ TUBE anymore! Out with the old, go the ER for the new.  Little did I realize, getting a new tube would turn into a 12 hour ordeal.  I guess Sean and I are just so used to Carter and all his diagnoses that we forget what a "complicated" kid he is.  When we called, the ER said they would call in radiology to replace the tube. When we arrived at 4am, we got a different story.  Now it would be 8:30 before they opened!  Just wait, it gets better.  Carter has now been off his feeds for several hours (it was 7am), and we are started to worry about his hydration and needed to prepare for method to get his meds in.  There was this whole ordeal of trying to feed him thru a very tiny 6 French tube which was put in primarily to keep the hole open (mind you the Carter "removed" GJ is 16 French and three times as round in circumference!).  That didn't work as planned, so another nurse put in an 8 French - whoopie, only slightly larger!  We gave his 8am narcotics-his wean is going great and this was not going to derail us.  A nice additional flush would give him some extra fluid, too.  After giving the meds rather easily, we hooked up a 60cc syringe and gavage feed him.  In 15 minutes, he got what he would normally get in an hour.  Yes, you guessed it, he threw up.  However, it was fast approaching our crucial 9am hour - Prograf time.  For those who are in the transplant know, you don't miss this med which is Carter's immunosuppressant drug.  So we gave it carefully and flushed it smoothly.  However, an hour later, Carter's tummy was not setting right.  The reason was we are giving everything into his stomach (ie. the "G" in our GJ) instead of the small intestine/jejunum (ie. the "J" side).  Therefore, we were getting nervous with his gagging sounds and potential vomitting.  This went on for an hour or so, but it was not feeds, but instead bile that was coming out of his mouth. We finally told the new nurse that we needed to get an IV started.  Again, for those who know Carter, he is not an easy "stick" and so we asked for the IV team's best.  The first tech tried valiantly, but missed the mark, and so another came about 30 minutes later.  Luckily, the 2nd person was able to get one in his right hand, and our nurse quickly hooked Carter up to an IV of D5. It would have to suffice for now.  To be on the safe side, we did a heel stick to check his glucose...perfect.  About this time (11 am), the ER was attempting to admit us based on our stay (over 7 hours), but I refused, as I feared we might never escape. So, after much more drama which I won't bore you with, a new mic-key button was placed at 2 p.m. By 4pm, we were on our way home again.  Yep, 12 hours! It wasn't a pleasant ride home as we were all sleepy, cranky and hungry.  At least we could now feed Carter properly, but we had to continue to say, "Don't pull your tube, Carter!" 

The rest of the week has been great.  We got great news from our friends, Emerson and Ashley! That always makes our day! We had labs again on Thursday, which looked pretty good. We got our second half of the flu shot and our synagis shot for Nov.  All in all, pretty good.  Still working on a schedule and trying to help Carter understand the importance of sleeping thru the night. So hopefully next week, I will be finished unpacking, organizing & cleaning.  I have a feeling, I will be typing that again next week! Oh well.

On a national front, this weekend (Nov 14-16) is National Donor Sabbath.  Our wonderful friends, the Downeys will be speaking at their church this weekend to help educate people about the importance of organ donation.  Check out the wonderful poster featuring their daughter, Caitlin, our Carter , and lucky #7, Kaden! She did an awesome job.  Please visit some of the following sites and feel free to share our stories with your church with Sunday! Did you know that most don't sign up to be organ donors because they say it's against their religious beliefs? In fact, the majority of religious organizations, support organ donation! Also, noteworthy, in October, for the first time ever, more than 100,000 people are on the waiting list (www.unos.org) - let's help spread awareness and sign up to be an organ donor.  Please read more about Donor Sabbath below.... 

http://www.donatelifeny.org/organ/n_donor.html

http://www.organdonor.gov/get_involved/donorsabbath.htm

Also, McDonald's is taking donations to benefit the Ronald McDonald House.  We didn't stay at a RMH, but many of our friends have, and the service and home like enviroment is very comforting! Make your dollar donation at McDonalds and know that you are helping a family just like us!

 Continue to let us know you stopped by signing the GuestBook and/or email us.  We miss you all in the Boston area, and for those local and close by, we look forward to catching up soon.  (P.S.  Sean is in the process of cataloging Carter's 1000s of photos and 100s of videos - more to come!)

Well, so far we are doing great! I couldn't imagine being home for a full week, but we did it! Carter has started to smile and make noises again signaling his is liking his new surroundings.  He is so funny to observe and take it all in before he decides if it will work for him.  I am glad he is settling in. Now we just have to keep him here.  We did labs almost everyday this week.  Yesterday's were still a little elevated. His K is up and we're not sure why.  We upped his fluid replacement in hopes of getting it down.  It's not a horribly high level, but we want to keep a close eye on it.  His liver numbers are starting to come back to normal. And his kidney function is about the same.  Hopefully a little extra fluid will make them happier.  Overall, we had a good week, stressful but good.  It's saturday morning, and I have put my tennis shoes on, found my favorite paint splattered t-shirt and have set a goal of massive house scrub down and organization.  Carter has taken over the house with all his toys and "stuff". My house was full before he got here, something has to go!  So I am starting in one room and will work my way thru the house.  I will probably only get to two or three rooms, but it's a start! If I have to be locked up here til April, we need to have a place for everything or I will go insane! It's a beautiful day here, blue skys, little chill and sunny.  The boys are still sleeping.  Sean is completely wiped out.  Driving all last weekend and starting back in the office Monday just about killed him.  I know he needs a day to rest.  Besides, he just gets in my way while I'm cleaning, so it's nice the house is quiet!  Still haven't found my camera thingy, so I promise to look for that today!

On a very personal note, I want to say a very special thank you to Sabrina D. She is Dr. Newton's nurse, our pediatrician.  Without her, I don't know how anything would have gotten done this week.  She has worked so hard to make everything so easy for us! Dr. Newton is very lucky to have her and so are we!  Thank You!!!  So, I hear a load of clothes calling my name..... have a great saturday everyone!

Sorry for the delayed update.  Everytime I go to add an update, the website stalls or something.  Maybe it's the internet.  Who knows, but the good news is we were discharged on Monday, right as rush hour started.  That was a lovely 1 1/2 drive home in traffic. We got home and crashed.  So tired.  We didn't get a cause for the fever.  Teething was probably the cause, but with transplant kids, no fever will ever go un-investigated.  No cultures grew.  Thank you Lord. Carter has been doing very good since being home.  We did labs yesterday and today.  His liver numbers were up and his BUN & creatine were elevated.  Today all numbers were coming down.  We have determined that the heat and scenery change caused him to be dehydrated.  He has been sweating much more since we got here.  We started a fluid replacement schedule last night and he seems to be doing better. His kidneys are certainly happier.  We also saw our beloved pulmonalogist this afternoon.  Carter has been wheezing more and I get nervous about those lungs.  He said he looks great and made a inhaler change and said he is going to wheeze until he grows a little.  Good news all around.  I on the other hand should probably be admitted for anxiety.  Being home is a big adjustment and being away from Boston and my team is an even bigger adjustment.  I am so glad to be home, but at the same time, it will take a while to settle down and get into a routine.  We have lots of unpacking and moving things around.  I have a closet full of TPN supplies and preemie clothes. Watch out ebay, here comes lots of cute baby clothes! If anyone knows anyone who could use lots of supplies, please email.  I would love to help out another family!  So, as I sit at the kitchen table, Carter is sitting in his high chair, face covered with sweet potatos, playing with his toys.  What an answer to our prayers! Life at home as a family, what more could I ask for!

P.S. Some where, in a bag in the garage, my camera adapter is hiding.  I will add pictures as soon I find the adapter!