Ashley Update

Well, since Jeffer is not updating this blog, I guess I will. This is much easier then typing it all a hundred times as we try to let everyone know what is going on.

Where to begin! Not long after we found out about the chromosome disorder, Jeff's parents came up for a visit and brought with them a packet of information that had 6 different examples of babies with the same disorder that Ashley has and information about all the different possible defects and problems that we could possibly be facing. It turns out that it is a genetic disorder that comes from Jeff's father's mother's side of the family (not the Maughan side for those of you who know Jeff's geneology loop) and Jeff is a carrier. The packet has been a major blessing! It really has helped us and the doctors to better understand what we need to be prepared for.

Back to the medical stuff, we had the 3D ultrasound on Sept 24th and another one since then so have got a better look at her. The bright spot in her heart is gone and so far everything in her heart looks good as well as the other internal organs. Our biggest concern right now is still her lower jaw. It appears to be majorly underdeveloped which can cause her some major breathing problems once she is born. She also does not have any fluid in her stomach and there is more amniotic fluid then there should be (no wonder I am so huge) which are both pretty good indicators that she is not capable of swallowing. This is also another indicator of breathing problems. Since most of the other babies in the family have had to have a tracheotomy shortly after birth due to small or none existant upper respitory passageways, the specialist wants to doing it (the trach) for Ashley before she is cut off from the ambilical cord so that she does not have to even try to take a breath on her own. This means that we will be having her at KUMed (AHHH!) since they are the only ENT surgeons in the area that are willing to do this procedure. We will have to wait until she is born and can be completely evaluated before we will know what else we are dealing with.

We are much more optimistic at this point that Ashley will get to come home but there are still so many things that we know could go wrong that there is no way for the doctors to be aware of ahead of time. They are doing all they can and so far I have been so impressed with the treatment that we have received. We are so fortunate to know all of this ahead of time so that we can give her the greatest chance at not only life, but a healthy, as close to normal life as possible.

Jeff and I have both been handling it all pretty well. We have are days that it all still seems so overwhelming but for the most part we are just trying to be patient as we wait for Ashley to be born. The pregnancy has been normal for me, whatever normal is. We know it is all in the Lord's hands and He will not give us more than we can handle. We could still use the prayers though.
Cari