Jordan Paul Janeway
October 12, 2012
Look at that cute little boy! He has given Heidi and Ryan many blessings and also a fair amount of stress. As many of you have wondered, questioned and worried about the status of Jordan, with the permission of Heidi, we decided to started a blog for him so people could get updates as frequently as possible. He is in the NICU at St. Vincent's Hospital, where he will be for at least another three weeks. If you would like to visit them, Heidi or Ryan have to be at the hospital in the NICU unit. You would need to coordinate with either one of them to see when they are going to be at the hospital to be permitted in to see this cute little boy! Here is what we know about him so far:
Nerves: He has great movement with his eyes, arms, legs! He kicked a ton as I held him. As the pediatric neurologist met with the Janeways, he said there is deformity or lack of structure to nerve 7, 8, and 9 which are the eyes, ears and throat area. I am probably missing other anatomical structures, but you can look that up on line!
Eyes: He was born with one eye open but over a few days he has been able to close the other eye. The nerve has been able to function and is now able to close and blink it. He had a pediatric ophthalmologist come in on Tuesday. The results were he has two functioning retina's and ocular nerves in the right eye! Great news! Basically it ruled out 2 diagnosis the doctor was leaning towards. He may or may not have perfect eyesight,but the ophthalmologist said not to worry about any major eye issues.
Ears: His ears are a little different in appearance. However as with the eye doctor, the pediatric audiologist has come in and told them not to worry about any ear issues until later, after the doctors figure out his eating, swallowing and the best way to nourish him. Unfortunately, he did fail his first two hearing tests. His does have ear canals and it looks like everything is in place, so everyone is hopeful. He responds a lot to his parents voice and seems to really engage when he is being sung to or talked with. But with the oxygen going through his nose and the secretions in his throat, it would be hard for anyone to pass a hearing test.
Eating, swallowing and keeping it all down: These are all the issues the doctors are trying to address right now. He first had a feeding tube through his nose. He had it switched to his mouth when they hooked him up to a cannula (oxygen tank). The doctors are saying that when he eats that he is not closing off his trachea and some of the food is going directly down his airway into his lungs. Speaking of breast milk, they are able to use Heidi's breast milk and the nurse places Heidi's milk in a large syringe with his feeding tube connected to the bottom and it is directly fed to him. It is amazing! He does not really swallow so the milk comes back up his esophagus and into his mouth and nose. He has a lot of secretions in his in nose and mouth since he is not like you or I and is not able to swallow them; so the nurses frequently suction his nose and mouth to make it easier for him to breathe.
He is on a little bit of supplemental oxygen to help his saturated oxygen stay at an acceptable level. As a result they are going to switch him from his feeding tube through his mouth to a G-tube that allows the food to go directly into his stomach. Ryan and Heidi have many specialist helping them with these issues. This is first priority and then they can work on other needs that Jordan has.
Our prayers and thoughts go out to Heidi, Ryan and the Janeway kids. Heidi's Mom will be in town for the next week and I know Dairy Creek compassionate service leader has been helping out. I know many of you want to help and we will try and coordinate this a little better too. I will probably put updates for needs of the family on this blog too.
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