sick baby...

Poor little Noah has now been in the hospital for over 2 weeks (17 days to be exact). I don't really have time -- or energy --to go into the emotional details of this whole experience. I just want to record and share some information and the pictures I have so far. I will write what is sure to be a LONG post with my feelings later.

Noah was diagnosed with Infant Botulism July 19th and received the antitoxin (BabyBIG) Friday July 20th. He was taken off the ventilator Monday July 23rd and transferred out of the Pediatric Intensive Care Unit (PICU) and into the Infant Unit on Tuesday July 24th. He slowly improved but still required minimal oxygen and an NJ feeding tube (through his nose into his intestines). By Monday July 30th, his CO2 levels were very high. He was lacking the energy and strength to effectively expel the CO2 from his lungs and it was building up in his body. They transferred Noah back into the PICU to put him back on a high flow of oxygen. They hoped that this would help his lungs expel enough CO2. He spent the night in the PICU and improved so much that they transferred him back into the Infant Unit Tuesday July 31st without any oxygen at all. Also on Monday July 30th, Neurology checked his gag reflex. It wasn't there. This means that if Noah tried to eat, he would most likely aspirate his food as he has no ability to protect his airways. This could lead to pneumonia or other respiratory problems. Without a gag reflex, the doctors are keeping Noah on an NJ tube (feeding tube into his intestines) and will not even try to feed him orally until his gag has returned. They are going to check again next week. Until then, Noah continues to improve little by little each day. Currently, he is still weak, has no gag reflex, and still requires a feeding tube. His CO2 levels are sketchy and need to be checked often. He requires a laxative every other day because his digestive system reflexes haven't returned and he can't stool on his own. He also requires antacid medicine to keep his stomach acid down since he doesn't have any food in there.

He seems to be more alert and stronger every day, but there are still many goals he needs to accomplish. Resuming feeding will be a long process. Once he gets his gag reflex back, a speech therapist will work with him to practice drinking from a bottle. He may not be able to complete a "full" feeding for a few more weeks. Until then, he will keep his feeding tube so they can supplement his feedings. Caton and I really don't want him to be discharged WITH his feeding tube, so we hope that he can make progress quickly.

I expect we will be in the hospital more a few more weeks.

This has been a trial for us, but we are so grateful to see our baby getting stronger every day. At one point we thought we would lose him and so although these weeks are long and trying, we are happy that soon he will come home to us fully recovered.

Here are the pictures I have so far. He is such a cute little guy.

iphone pictures...





















about to take Noah off the ventilator...









































first smiles...