The Journey of James Weston

Monday, August 23, 2021 Emergency Scenario Situation - Mom and Dad completed and passed the final test. James was put into a stroller and we were told that we needed to do a trach change while we was in the car seat. It was super stressful but we got it done. Unfortunately James was already super upset before we even started because we had clamped.his G-tube while he was in the car seat to prevent the upside diaper from leaking. Moving forward while we are traveling James will be connected to a Farrell bag instead.  For those who read our blog we also wanted to share with you something personal that we are going through. Tomorrow Mom is 7 weeks pregnant, but she just found out today she is experiencing a miscarriage. We've been extremely excited for the past few weeks and even bought James this cute onesie to announce it to family. What gives us hope is that this was a natural pregnancy, and was not IVF. Mom is currently is a lot of pain and it's just a lot right now with gett...

Sunday, August 22nd, 2021 Early Morning :   Dad spent the night with James and they both slept until 2:30am and then … Baby Monster James was Inconsolable until 5:30am.   It seems like gas and secretions.   Dad suctioned a bunch and continued to pull stuff out. Dad held him. Dad rocked him. Dad patted him. Dad changed 2 diapers.   No sleep for Dad or James tonight … 😴   Dad finally began to dose off around 5:30am and the feed alarm began going off. After 5-10 minutes of continued beeping, Dad got up to find the Nurse and saw why she wasn’t responding … she fell asleep at the desk around other people. 😮 . Dad watched one of the nurses nudge her when he walked out. Unreal. Pretty rough night overall.   Morning :   G-tube bile weighed in with 158 mls output during the past 24 hours.   The Premie diaper was 58 mls for 8am output.   Dad clamped at 8:10a for his hour. No leak during the clamp, so that's good. James then had a big poop a...

Saturday, August 21st, 2021 Mom and Dad finished up their Room-In on Saturday. Everything went really well! The hardest part is going to be preparing his feeds and making sure that those are given on time along with the meds. As soon as you think you have a break from giving him a med you realize that you now need to prepare fortified breastmilk. Preparing fortified breast milk includes thawing out frozen breast milk moving it to the fridge then taking the thawed breast milk mixing it with measured out Similac Advance powder (180ml of breastmilk to a teaspoon of formula). He only needs 130ml though for 4 hours because the CDC regulation is that breast milk can only be out for 4 hours at a time. Currently his continuous feeding schedule is 32 ml an hour so that is 32 x 4 = 128ml (rounded to 130ml). But because we have to fortify 180 ML at a time there is roughly 50 ml left in a bottle we put back in the fridge until the next feeding. Mom and Dad gave James a bath and his teeny little tu...

Friday, August 20th, 2021 12:30am:   Mom experienced the first rain out. James had a bunch of water go down his tubing causing him to desat into the 40s and Brady. Turned on the lights and suctioned him several times. He was really pale but stayed asleep the whole time. Super scary that he did not try to cough. The nurse had the RT come in. The RT said that unfortunately the LTV is just a really wet circuit. She was wondering if we were going home with a heater because she suggested him just being on an HME instead. That way we wouldn't have to worry about rain out. We are going to have to look this up in the FB group because Mom feels like she’s getting different information from the RTs here and from our Brownings RT. 3:30 to 4:30am:   James is really irritated, passing gas here and there.  Mom even tried venting with a syringe again. She changed two diapers and one preemie diaper, sat him up and just patted his back for a while. Perhaps he needs Albuterol or Mylicon. H...

Thursday, August 19, 2021 -Written by Dad Dad took over so Mom could sleep at home before they do their Room-in tomorrow night.  James s lept from 930pm-1:30am.  He REALLY needed it. He’s been pretty cranky and unsettled for a little while, so for James to sleep and rest is great.  We did a diaper change, suction, changed the drain diaper, did a reposition and BOOM! … He's back asleep after only 30 mins. 😴  Then, like clockwork, James is up again at 5am with a big poop to start the day. Overall, it’s been pretty good tonight.  A few days ago we had a Baby Yoga Instructor come in to meet with James and brought the most amazing book called “Breathe Like a Bear”.  It’s all about breath work, humming, and how to teach kids how to connect with their body through the most adorable approach. Dad read James the first chapter titled “Calm” and it is so good!  The section titled “Hot Chocolate” had Dad teach James how to blow softly like it’s really hot, then ...

Wednesday, August 18th, 2021 ⏰ James randomly woke up at 1:45am and stayed awake until 3:30am. He needed to get suctioned and was drowning in secretions. Mom dressed him since he was freezing and his trach was rubbing on his chest. Also his gauze had come out from his trach and his G-tube was leaking. Not to mention changing both diapers (one from his G-tube). He was awake because he had a visitor on night shift!  🫁 It was James' favorite Night RT! It was so nice of her to take the stroll over on her break to see James before he goes home. At first Mom was like who is this person at the door who is not our nurse. It's pretty dark in the room. But it was a very welcomed surprise! Also we are ecstatic to hear that she will be submitting her lullaby along with another RN or two 😉. I can't wait to see the video! James always looks so much bigger to people that haven't seen him in a few weeks, sometimes it's just a matter of a few days! He is definitely turning into a ...