Daddy 145 - 5210 grams & Lots of Cuddles!

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 right before they are discharged. Well it's been about 5 months maybe it's time! 😂

James had that explosive diaper we were waiting for around 5pm right after Mom did the trach tie change. 

Overall James had a good day. Could we have found his sweet spot on the vent?! He got lots of love from his RNs and RTs. They even held him today and he really wanted to fall fast asleep. But everyone made sure to keep him awake as much as possible so that he could have a really good night. Don't worry James still had quite a few naps during the day! 

The biggest things James is struggling with now is reflux and constipation. You know besides that whole breathing thing! The latest with moving to the PICU is that they don't have any rooms. The PICU has 16 beds whereas the NICU has 64 beds. They're constantly floating NICU nurses over to PICU. So we may be here for a while... 🤷🏻‍♀️

James had a good night being able to get in 4 hour stretches of sleep at a time! Mom is super excited about this! Towards the early morning between 5:30-6:30am James kept desating. He was irritated and still half asleep. We think he was having some bad dreams. 💭

So on another note Mom's UTI is actually interstitial cystitis. Caused by stress, standing for long periods of time, and caffeine. So it's going to be pretty hard to eliminate any of these. We will start by eliminating caffeine which is the easiest and that is saying a lot! A fun Google search of interstitial cystitis will show you that one of the treatment drugs given for IC is asking people to join their class action lawsuit in a drug that caused blindness. Yay!

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