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
Thanks for the update. I'm sorry Ben and I been out of touch and were not aware of these events. Let us know if there is anything we can do - we can only imagine what an emotional situation this is for you.
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