The Journey of James Weston

Friday, May 28th, 2021 Aunt Brittany (Mom's BFF) came to visit! It was a great visit and James really enjoyed it! Lots of pictures below. Grandpa Don will be coming on Sunday, meeting his grandson for the first time! In the morning, James did some more tummy time on a pillow. Unfortunately this time there was too much pressure on his G-tube MIC-KEY and it leaked (like all over his onesie, bed, and blankets). Mom thinks that since the G-Tube was pushed in it made the balloon not be against the stomach wall allowing his stomach fluid to come out around the MIC-KEY. Also the stoma looks a little wider. This actually should be helpful since the MiniONE non balloon option that is being ordered is a 14 French currently James has a 12 French.  Fun fact: The French size of a catheter is determined by a simple multiplication of 3 (diameters in millimeters multiplied by 3 = the French size). For example, if a catheter has a diameter of 4.7 millimeters, then the French (Fr) size is 14. Mom wa...

Thursday, May 27th, 2021 *Mom is exhausted and having a hard time keeping up with posts. Jimmy's side eye Changes/updates: We tried to decrease the PEEP from 13 to 12 but James did not like that so we ended up keeping it at 13. We are starting continuous feeds overnight of all breast milk. Feeds during the day are 117ml. James lost some weight weighing in at 5175 grams. Down from 5210. This is good because he was gaining too much too fast. Trach Tie change went well. Mom held James several times. James did tummy time on a pillow, which is safe because he has a trach.  *James has a trach. P.S. You can email James your love and support as often as you’d like. Mom and Dad read these emails to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com

Wednesday, May 26th, 2021 Overall James had a good day and good night. Mom and Dad did a successful trach change together. Previous to the trach change James had a nice bath. He also decided he wanted to have a bowel movement in the bathtub. So we needed to empty out the tub and try again. James is sporting a new onesie, just one of the many awesome piece of clothing handed down by Baby Alexander. Baby Xander was born just one week after James, but just to kind of give you an idea Xander was born at 20 ¾ inches, James is only 19 inches right now at 5 months. Baby James was only 1.5lb the day his friend was born! It was so generous of the Czentye family to give us all of his adorable outfits! James had an ultrasound of his scrotum to make sure that he did not have an incarcerated hernia. The tech unfortunately did not get an RN or RT and started the ultrasound while no one was in the room (Mom had just went downstairs to eat). James ended up having a BPD episode setting off alarms while...

Tuesday, May 25th, 2021 Typical busy Tuesday! 8:00am: 🍼 For the 2nd time too much of Mom's frozen breastmilk from January wasn't used in time and it will expire before we can use it! For anyone that has pumped you know how frustrating this is! Now Mom needs to overcommunicate to the RNs to use the January milk thawed from the milk room and not the May milk put aside in the brown paper bags marked to take home. 🤦🏻‍♀️ 8:30am Blood gas: C02 was 73.5 Unfortunately another heel stick that got blood everywhere. Thank goodness for hydrogen peroxide for our blankets! 9:00am Hands on and then Physical Therapy stopped by to stretch James arms and legs. They are working with the left side of his body to help him become less stiff and more flexible. He currently has a flat spot on the back right side of the his head so he is more inclined to turn his head to the right and not the left. We need to fix this as soon as possible so that it doesn't become a bigger issue later. Has anyone...

Monday, May 24th, 2021 James in his cute Dino Romper from another Trach Mama in St. Pete! Rompers (& snaps) are the best for trach & GTube kiddos! More new outfits to come! Monday weigh-in: 5210 grams! (11lb 7oz) -James gained too much too fast so we are going to change the amount of calories he is consuming. Blood gas: CO2 was 80 (previously 63) -Since this was so high they are going to retake this early Tuesday morning instead of waiting until Thursday. Changes: Changing his formula feed to a lower calorie. From Similac NeoSure 30 calories to Similac NeoSure 22. Still keeping the same number of feeds which is six a day (4 breast milks, 2 formulas) Continuing to micro-wean his methadone We will not be weight adjusting his clonidine moving forward This morning started off with some physical therapy and then speech therapy. James is doing really well with turning his head and keeping eye contact. We were discussing having him get his hearing test soon. Normally babies get this ...

Sunday, May 23, 2021 Morning: James greeted the morning nurse with a small episode and then went back to sleep. Dad held James for a little bit and bonded with a few photos. The doctor came in and said everything looks good. No episodes last night. No changes needed. If James doesn’t poop this morning then he will give the glycerin.  Video: Baby James and Dad Afternoon:  Dad lead the trach tie change smoothly. The nurse gave James the glycerine suppository around 10am  to help him poop, but unfortunately, James has not yet (5:30pm). Patiently waiting!  Small mini-episodes today due to wet diaper. Dad would change it and James would immediately calm down. We have our little system going.  James in doing some tummy time in his Boppy to switch things up a bit.  P.S. You can email James your love and support as often as you’d like. Mom and Dad read these emails to James as they come in. We all love them!:   JamesWestonAbramowitz@gmail.com