Normally we would weight and do measurements on Monday morning but all of that was done on Sunday due to the surgery being scheduled for 11am. Below are the new numbers:
Weight: 5950 grams (13lb 1oz)
Head Circumference: 15.84 inches
Length: 21.06 inches
5:45am UPDATE: The morning started off at 2am with trying to get an IV with no success. We tried for 3 straight hours. Eight tries between 4 folks who tried on the hands, wrists, feet, scalp, and arms. 😢 This is even with a PRN morphine dose. Mom held his pacifier while he wrapped his little hand around her finger. Sometimes we had 3 people holding him down, sometimes only 2. Two is not enough; Mom thought we already learned this lesson the last several times!
Now we are waiting on the PICU PICC team to get here at 7am so that the NICU PICC team can borrow their ultrasound machine. James' feed stopped at 3am, so they wanted to get his IV in at 3am to start TPN and lipids. However since he is "older" they are not concerned with low blood sugar. Worst case if they still can't get an IV with the ultrasound machine then they will have to get anesthesia to sedate him first.
Mom and Dad will go across the street and wait in the waiting room during the surgery.
We will update as the day progresses...
7:30am Update:The PICU PICC team came over around 6:30am to attempt 2 IVs with the ultrasound machine. After 1 try in the right forearm, she got a successful IV in the left upper arm! So 10 tries between 5 people. So hard to watch! We still only have 1 IV and we need 2 for surgery. At this point we may be relying on anesthesia to put in the 2nd one in the Operating Room.
The issue with his veins is that once a baby is poked so many times their veins start to branch out and stop going straight (missing the technical jargon). This can correct itself over time.
10:30am Update: Just waiting to head over to the PICU. Surgery is scheduled for 11am. James has his IV fluids connected with lipids and TPN.
11:00am Update: On our way... James received intranasal versed, which is an anti-anxiety med, to help calm his nerves. It didn't take long for him to pass out for the transport over. Anyone know where Mom can find Versed? Lol
11:40am Update: They took James back to the OR. We signed consents and spoke with the Surgeon and Anesthesiologist. They are going to do a caudal epidural nerve block. They may not do the 2nd IV.
1:00pm Update: They called with an update saying that they placed the new G-tube button and they are finishing up the hernia. May be another hour until finished.
2:00pm Update: GI surgeon met us in the waiting room. Everything went fine. All procedures were successful. Anesthesia ended up placing a 2nd IV in his right ankle.
3:00pm Update: Back in the NICU and all hooked back up. Transporting a vent dependent baby is scary! James is still feeling the anesthesia and pain meds. He seems good. James definitely has a lot going on down there in terms of bandages so changing his diaper right now is a whole ordeal. G-tube site looks good with the new MiniONE button. We are starting feeds at half (so 60 ml). Will eventually stop TPN and Lipids if he can tolerate feeds.
Post recovery photos
Thank you for all of your love and prayers as we continue on this journey. ❤️🤗❤️
Evening Update: Mom and James took a much needed early evening nap, since they had only slept 1.5 hours the night before. Now just waiting for shift change to see who it will be! 🎲
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
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...
Today was Day 7 out of 15 of James' Intensive PT/OT at Wolfson's! Taking his first independent steps! ðŸ˜ðŸ˜ðŸ˜ Thank you everyone for the love and support! This summer has been INTENSE between learning how to walk and weaning off the feeding tube! Huge progress though!
Wednesday, August 25, 2021 Early Morning: After getting James settled for the night, Mom posted up on a mattress on the floor next to James’ crib in our living room and Dad slept upstairs. They agreed that Mom will take the first few nights and Dad will take the first few mornings until things get routined. James decided to continue his late night/early morning routine of fighting sleep, which means Mom didn’t get to sleep much at all. She gave him his Clonidine and other meds at 2am and unfortunately the home vent setup creates a ton of water in the circuit which flowed all the way up to James’ trach and nearly water-boarded him. Mom was able to navigate through this and eventually get James to sleep around 4:30am. Dad came downstairs to give James his meds at 5:45am to find Mom just getting to bed. Since James was fighting sleep, Dad held James for a little while to begin the day. With Mom’s coaching, we found a position that worked real...
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