Wednesday, April 22, 2009

This past week


This past weekend I went home to find most of the boxes unpacked, Audri has been working overtime to get the apartment ready for Jacob to come home, which we hope is soon. He is still on the NG tube and seems to be doing pretty well with it, not as well as with the NJ tube but well enough that he may come home with it. He has not gained much weight in the last couple days since he registered 7lbs and 4 oz this past weekend.

Audri took him out of his "room" for the first time today on a stroller ride. A picture of him in the carseat which is in the stroller is to the left. JD is really proud of 'Mommy and Daddy's new house' and the fact we can see the pool from our back porch.

Sunday, April 12, 2009

Thanks!!

Thank you all so much for your prayers and especially thank you to all who helped us move this week!! Everything happened so quickly and went so smoothly thanks to you!! We are beginning to settle into our new "home" and Jacob is continuing to grow and do well. He now weighs 6lbs 12oz and we are still waiting to bring him home. He is much more comfortable and able to breathe much better now that he is on the NJ tube feedings. They are still "trying" 2 bottles/day to see how well he tolerates them. Jacob would not be able to go home with the NJ feeds if we still lived in Rome, but should be able to come home sooner now that we are down here (since he will most likely come home on the NJ feeding tube). So, now we just continue to wait......

Tuesday, April 7, 2009

Craziness....

Jacob is up to 6.5 lbs now!! His reflux is getting worse - he is needing more oxygen and this morning was unable to take his bottle without it spewing out of his nose. They are going to feed him using an NJ (through the nose and into the intestines) tube for the next 3 days, as a trial to see if it helps with his breathing. The doctors are basically reevaluating his condition at this point to try to get some answers. The geneticist did inform us last night that Jacob most likely has Cornelia De Lange Syndrome-CdLS (www.cdlsusa.org), so we now at least have some idea of what we're dealing with.
JD is doing well. He has begun to "pottytrain" himself a little, with help from Grana. We know he's really confused about all that is going on, but he's hanging in there with us. If you ask him about Jacob, he will say "baby Jacob hair stick up a lot, JD hair stick up little bit" or "baby Jacob got boo boo on nose, JD not have boo boo, God make it better".
Daniel is spending most of his time working and keeping up with everything else. Audri is at the hospital almost every day, sometimes all day. We have found an apartment and are lining things up to move this weekend. We are in limbo right now, but are all hanging in there and taking it a day at a time. Please pray that Jacob's reflux will improve such that we don't have to tube feed him long term and that we get "settled" into our new place before he is ready to come home. Also pray for JD and his understanding of what is going on, that he will continue to adapt and do well with all the changes and for Daniel, that his job will continue to go well.

Saturday, April 4, 2009

"For I know the plans I have for you...."

Jacob had a PH probe study done on Thursday to evaluate his "reflux". The doctor called on Friday to tell us that his reflux was severe and that they would be considering surgery when he got over 10 lbs. There may be some alternatives to the surgery that we would look into, but we don't have to make any decisions yet. We found out today that in a 24 hr period, he has approx. 115 reflux episodes, with 7 of them lasting longer than 5 minutes. No wonder he has such a hard time breathing. They are planning to send him to Scottish Rite next week for an MRI of his spine and his ears (to look at the "tethering" of his spine and to get a better look at his ears regarding the hearing loss). He will also get an evaluation done on his airways. We are actually grateful they are not sending him home today, because according to the GI doctor - "if he goes home now, he will be back in the hospital within 2 weeks". Jacob will not be able to go home until they feel that he is stable enough to not have to be readmitted in the near future. We have yet to reach that point. They are telling us that even when he does go home, we should plan on spending a lot of time seeing specialists and even a few more hospital stays.......which brings us to the next thing on our minds.......we are planning to move down here to Atlanta. We've been considering it for a few months now, and the doctors are now telling us it would be the best idea for Jacob (at least in the short term) and may help us get him "home" sooner, since we'd be closer. So, we found an apartment today and should be able to sign the lease next week. Daniel will keep his job in Rome and stay there during the week, meaning Audri will take care of JD & Jacob during the week by herself. We realize this is not an "ideal" time to move, but we know this is what God is leading us to do. We'll start off with a 7 month lease, and maybe we'll be able to move back to Rome in November. We have no idea what's going to happen, but we do know that one way or another, God is in control and HE will work it all out.

Wednesday, April 1, 2009

not an april fools joke

jacob is not coming home saturday, as planned-will update more later when at a computer ...on mobile now