HOME SWEET HOME!

Elijah is home!! We were finally able to bring our boy home. It is such a comforting feeling knowing he is down the hall in his room where he is suppose to be and not in the hospital anymore. The only downfall is there is no nurse call button!

The nurses at the St. Vincent hospital NICU were awesome. As difficult as it was to be there at times they made it as comfortable as possible. They were excited for us to have Elijah come home, but some were sad he was leaving...he became one of their favorites!

He is comfortable in his own room, in his own bed. He thought mom & dad did an awesome job decorating his room complete with a 6' tall Brett Favre phathead poster...not kidding! It will be an adjustment period for us, but a welcomed one! If you are in the neighborhood stop over and meet him...we just ask you call first!

Countdown is on...

Hard to believe but it has been a month since Elijah had been admitted to the NICU. Today we had some good conversations with our doctor in getting Michelle and I prepared in bringing Elijah home!! Because of everything going on with him there is a few more things for us to go over than checking his car seat! Plus with it being Memorial Day weekend a lot of people are out of town.

Needless to say, if everything continues like it has we are hoping to finally get Elijah home by Wednesday of this week, if not earlier! We will keep you posted.

State of Mom & Dad

The past few weeks Michelle and I haven't shared a lot of the information to anyone about what was going on with Elijah because each and every day there was a different diagnosis or theory.

As much as we wanted to let people know what was going on, we really didn't know what was going on! We don't want people to be sorry for not knowing or upset because we didn't share what was going on. We needed the time to process the information given to us, which has been a lot, and to get a handle on the situation before letting everyone know.

To truly get a better understanding of where we were compared to where we are now...is night and day! Originally we were led to believe our baby had a more devastating condition that had horribly high rates of fatality. So being in the position we are today is a hell of a lot better than where we were a few weeks back!

But not to worry, Michelle and I are not walking around doom & gloom, it is business as usual! As a family we are getting challenged early and we are going to come out of this stronger than ever! We can't wait to get Elijah home and introduce you to him. Take care, see you soon.

Finally figured it out.....

As most of you know, Elijah is still at the NICU (Neonatal Intensive Care Unit) at St. Vincent Hospital. He had to come earlier than expected due to a rapid heart rate, which the doctors believe was due to a combination of enlarged valves and a hole in the bottom of his heart. Since his birth, he has been given medication to help regulate his heartbeat. We do not know how long he will have to be on this medication. As for the valves, the pediatric cardiologist is not concerned that they are slightly larger and as for the hole in the heart he had said that it is pretty common. Elijah will have follow-up appointments with him to monitor his progress.



His kidneys have been looked at by specialists at Children's Hospital of Milwaukee and they will continue to monitor them by ultrasound, but so far things are good since his is peeing. Elijah also has a low platelet count, which means his blood will not clot as fast as if it were at a normal level. The Neonatalogist have added platelets to him hoping that they will eventually reach a point where it will plateau at a healthy level.



The doctors are happy with is progress and have classified him as "stable"...only one more thing before he can come home...eating. Elijah seems to have difficulty sucking on a bottle. Currently he will only take a 5ml of breast milk and the rest of it has to be tube fed to him. They are having a speech therapist work with him, since they work on muscles of the mouth. They are trying to get him where he needs to be in order to come home. If he does not improve within the next week or so they will surgically insert a tube into his stomach (called a GT tube). This way he can come home and Steve and I can still work on his bottle feedings. The tube is just to feed him in case he does not take all of his feeding by mouth. The GT tube is really easy to take out and is not painful.



The above symptoms and a few others have lead doctors to diagnose our Elijah with JACOBSEN SYNDROME. Basically, Elijah is missing a piece of his 11th chromosome. Steve and I were tested to see if it was genetic, but the Geneticist found out that it was not from either of us but that Elijah's chromosome somehow mutated. This syndrome is so rare, there are only 200 reported cases in the world. We do not know the severity of it and neither do our doctors. We are just taking it one day at a time.



The last couple of weeks have been a struggle, emotionally and physically for all of us. Thank you to all of our friends who have expressed their concern and offered a shoulder for us, it really means a lot. As we have said we do not know much about this syndrome, but we will do our best to keep you all informed!



To learn more about Jacobsen Syndrome go to:

http://www.healthline.com/galecontent/jacobsen-syndrome

Bundle of Joy

ELIJAH STEVEN ANDRASTEK

April 25, 2009

9:57 am

5lbs 15.4 oz

17 1/2 inches