A Lil' Boy's Journey to Live….

Archive for December, 2008

12/27/08 more pics



Riley had his Christmas last night!


Here is Riley Christmas morning.  Not a happy camper!

Christian was happy Christmas morning, though.  So glad we didn’t end up having to take Riley to CHOP during the night!






Well…Happy Belated Christmas to everyone.  Sorry I haven’t updated.  Things have just been crazy!  We got home from CHOP on Monday.  Riley came home with a NG tube until his surgery on January 6th to place the GTube and to have the Ladds procedure.   We do have a pump to use for feeds.  He refuses to take a bottle at all. 
Anyway….I was extremely glad to be home for Christmas, but it was a rough day.   It actually started in the middle of the night on Christmas Eve.  Around 1 am Riley woke up crying  and throwing up.  He was very unconsolable.  We ended up calling the Fellow on Call around 2.  They told us to stop his feed and wait a couple hrs.  We did that, but Riley was still up all night.  It was a night that reminded me of being in the hospital.  A night, that had it occured there, they would have kept us another day.  The whole thing was scary because Riley has sooo many things wrong with him that any of them could have been causing the problem including his heart, or it could be a normal baby thing like teething, but the only way to truly know would be to go back to CHOP.  Although….when we were there they couldn’t figure out what was wrong.  I just know once we go to CHOP we are staying.  Anyway….this led to us being VERY tired on Christmas day.  Riley was also not his self.   It was not how I thought his First Christmas would have been.  His gifts at home aren’t even open yet.  Oh well I guess.
I will say, though, the doctors at CHOP are AWESOME!  Since we called them on Wednesday night they have called us about 6 times just to check on Riley.  That is very comforting to know that they are there, and they care.   I’m not sure that Riley will make it at home till the 4th with the feeding issues we still seem to be having, but our fingers are crossed!
Thank you to everyone who helped to give our family a good Christmas.  Thank you to Jackie, Melissa, Chris, Julia, Katy, Terry, my parents, Jim and Shirley Jacobs, Lil Deli in Riverside, Chris, Riley’s Speech Therapist, and Bancroft, everyone at GCIT, and everyone at CHOP who helped to get us out of there for Christmas.   Hopefully I didn’t miss anyone.  The best part of most of these people is they are strangers.  That just shows that there are truly caring wonderful people out there.  Thank you to all of you.
Thank you to Becca McLean for your great emails.  Sorry I haven’t gotten back to you, but trust me I will.  With the G-Tube coming it will be nice to have someone to talk to who has an idea of what Im going through.  Riley’s situation with his heart is pretty unique so its hard to find others going through the same thing so having Becca to talk with about the G-Tube will be nice.
Well…..our life, right now, seems to revolve around feeds.  It seems like by the time he eats and we clean the pumping system its time to set it all up again for another feed.  Not to mention getting his 9 meds. in through out the day.  We are kinda on pins and needles too.  If we have a feed that Riley doesn’t tolerate by throwing up and being unconsolable we have to take him back to CHOP.  That is making the everyday a little hard, but we are getting through.
Please continue to pray for Riley.  Even though we seem to be focused on Riley’s feedings right now his veins are still a huge factor.  We will go back for a Cardiac Cath probably soon after discharge from his surgery.  Thats assuming we don’t end up doing it while we are there.  You just never know whats going to happen.


Hello.  As I’m sure most of you know….we are still at CHOP.  Riley refuses to take a bottle so he is on a continues feed through a NG tube.  He is not happy at all.  He has socks on his hands so he doesn’t pull the tube out, and that is really bothering him.  He likes to express himself with his hands, but he can’t.  I took the socks off earlier to give him a break, and he went right for the tube.  Needless to say the socks had to go back on.  Putting the tube back in is to tramtic to risk it coming out.
We are going to do the G-Tube and Ladds procedure.  We are just not sure exactly when.  It will be very soon though because we have to do it while his veins are stable.  We are hoping to be home for Christmas.  Idealily we would be home sometime over the wkend.  If that is not possible they are discussing giving us a pass to go home for Wed. and Thurs.  When you are here, though, you never know what will happen till it happens.  I just really want Riley home for Christmas.
Also as you may have read from Chris…..2 of Riley’s veins showed mild to moderate obstruction.  Not what we wanted to hear, but he is still considered stable at this point, and Dr. Rome wants to wait before they bring him back into the cath lab.  Now, too, the idea is floating around that if the veins remain stable moving forward with the stage procedures to see how they work out, and if he has issues continuing down the road with one ventricle at that point list him for transplant, but if you have been keeping up with the blogs you know that ideas seem to change all the time.
Right now, though, we are here strictly for the problem with his eating.  He has had a fever a couple times so that is being closely monitored because of his lack of spleen, but for the most part we are here for GI, although we are on the Cardiac floor, but he always will be no matter what he is here for.
Time to get back to the room.  Chris took some pics while she was here so Im sure she’ll post them soon.
Thank you for your support!!


I know that everyone who reads the website knows that Riley got a new crib, but I don’t believe that I thanked those responsible.
Thank you, first, to Julia Krug who put the whole thing in motion.  Julia had never even meet Riley, and was determined to get him a new crib.  Thank you to Steve Goldstein, Jeanette Pepe, and Eric Gross who work with my sister, Chris, for your donations to Julia for the crib.  Also Thank you to Kim and Selene Small who are members of Julia’s church.  Thank you to Greg Fisher at Deptford JcPenny’s for working with Julia on the price; probably making the whole thing possible.  Finally Thank you to my sister Chris.  Had she not be so saddened by the fact that Riley had a used crib, Julia may not have been so inspired to make sure Riley had a new one.  The crib is beautiful!  Thank you to all of you!
One last note….Wednesday is Riley’s sedated echo.  Oh how I am dreading Wednesday.  We have NEVER, since I was pregnant, had a good echo.  I am pleading with God to make this one different.  The stents HAVE TO be working.  They HAVE TO be keeping the veins unobstructed!  I just cant handle the alternative.  Please…if you pray….pray for Riley.  I know I’ve said it before, but we truly need a Christmas Miracle!!



We went yesterday and met Dr. Hummel.  He seems like a great doctor, and the best part is he is part of CHOP.  He’s office is a little bit of a distance, but we wouldn’t be going there in an emergency anyway.
Riley has also started his early intervention.  OT was out yesterday.  It was more of a get to know you kind of visit..  She did leave me with some ideas, though, to help with getting Riley to sit up.  Speech Therapy will be out on Monday.  Once everyone is here for the first time I believe they come back every two wks, but I could be wrong, it could wkly.
Other then that everything else is pretty much the same.  We go back next Wednesday for the sedated echo.  Not looking forward to that at all!  Keeping praying for a Christmas Miracle!

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