The Journey of James Weston

Thursday, January 6th, 2022 Today our M, W, F nurse wanted to get some extra morning hours today since she needed to leave early on Monday. Before we left for the appointment we noticed that James had a rash all over his body. We had been giving him Tylenol and Motrin around the clock since the evening prior because he had a very high respiratory rate and heart rate. No fever but we needed to watch for any more reactions to yesterday's vaccines. It was just too many all at once. We had our eye appointment in the early afternoon so Dad and Mom took James to Palm Harbor. James had eye patched 34 times since his last appointment and the doctor was very impressed. We provided her a printer spreadsheet showing which eye, what day, and for how long. She said that most parents just don't do it so we were doing a great job. 👍 After her examination, her recommendation moving forward is that James patch his left eye 5x a week and his right eye 2x a week. She felt that his right eye is w...

🤣🤣🤣 I honestly thought that once we hit our due date in April that everything would be fine. As a first time Mom and someone without a medical degree I had no idea what to expect. In the beginning, I just assumed we would be discharged once he reached 4 lbs, since that is the minimum weight requirement to be discharged. I figured that once he would be full term at 40 weeks gestation everything would be fine. Well the fact is he needed the safe harbor of being in utero for another 3½ more months. Doctors can only do so much and the incubator is just a clear plastic dome. Artificial wombs are the future. Another topic for later. The realization of everything not being fine did not occur to me until our nurse mentioned that James may need a trach. We were told it didn't look like he was getting off the ventilator any time soon. It was very hard to hear at first but thinking back...what a difficult thing for that nurse to have to bring up, knowing that I would be devastated but als...

Wednesday, January 5th, 2022 UPDATED NUMBERS!  Weight: 18lb 13oz Height: 63cm Dad will fly in around midnight tonight from NJ. Yay! James had his pediatrician appointment today in the morning. The first thing was his developmental assessment. She asked Mom a lot of questions regarding James' abilities and fine motor skills. Once finished she scored James at 6-9 month category. A few things we need to work on like using his fingers to pick things up, intentionally throwing toys, understanding the word No, recognizing strangers vs familiar faces 😂 (James is very social, so we don't see this happening). And now we have a list of things to work on along with a very large book of games and activities to practice. He also received 5 shots in his thighs between 2 nurses. These we're his 12 month vaccines, which also included an extra Hep B due to a nurse in the PICU giving him a shot 9 days too early and "not counting". 🙄 It was awful and he cried. 😭 Even Cocomelon di...

Tuesday, January 4th, 2022 James had his pulmonology appointment for his synagis shots in the afternoon. This was the first time going to an appointment with our Tuesday nurse and it went very smooth. She was very proactive and just knew what to do! There is a fine line of helping pack up the equipment yet also keeping an eye on James. Seems simple, but Mom has had her fair share of experiences with nurses, so she had pretty low expectations. Mom was very impressed with her though and will most likely try to schedule all appointments on Tuesdays!  At the pulmonology appointment James was weighed and measured. They also checked his End Tidal CO2 numbers and the Doctor listened to his lungs. Our pulmonologist mentioned that he could try lowering his PEEP to 8, but the concern is that James has been having a lot of air trapped in his belly. Mom said she thought this was because the trach was too small and the air was going around the trach. Because of this, the pulmonologist wanted Ja...

Monday, January 3rd, 2022 Lots of appointments for the week! Tomorrow James has the Pulmonologist, Wednesday the Pediatrician for his 12 month vaccines, and Thursday the Opthalmologist. Some where in there he will have Physical Therapy and a stop by from the Clinical Nurse Manager from the staffing agency. Check out James as a pirate below! Juju helped Mom put up a canopy over James' crib. Unfortunately the ceiling drywall is falling down. We already had the landlord patch it up before we were discharged, but there is probably a leak in the roof because little pieces continue to fall. It could be dangerous if anything were to fall in his crib. Photos below.  P.S. Wouldn't it be fun for James to read an email from you when he is older? What a treasure! His email is JamesWestonAbramowitz@gmail.com. How awesome to get his reply back in like 10 years...

Sunday, January 2nd, 2022 Family was going to leave today but they decided to stick around since Dad would be flying out early tomorrow morning to New Jersey for the funeral. 😥 James loves being held and will fall asleep quickly. We had a lazy Sunday and a good thing since James needs to rest up for the week ahead. We have appointments scheduled almost everyday!  P.S. Wouldn't it be fun for James to read an email from you when he is older? What a treasure! His email is JamesWestonAbramowitz@gmail.com. How awesome to get his reply back in like 10 years...

Saturday, January 1st, 2022 Happy New Year! Some of his best photos yet! James lovin' the taste of water. P.S. Wouldn't it be fun for James to read an email from you when he is older? What a treasure! His email is JamesWestonAbramowitz@gmail.com. How awesome to get his reply back in like 10 years...