The Journey of James Weston

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

Saturday, May 22nd, 2021 James started the morning with an episode around the 7:30am and was inconsolable. The two main issues today is that James has not had a bowel movement in a while, today is his third day. Secondly, James has been having very bad reflux. Spitting up large amounts of his feed and gagging/choking. He needs to be sat up quite often. After his episode the nurse held him which he very much enjoyed. Mom then also held him. He did not want to be put down and enjoyed in a shoulder hold, face down or chest to chest. James had several episodes throughout the day. These were all pretty severe with very rapid desats. And again very inconsolable. One issue is that his leads and pulse oximeter continue to not read correctly. The BPD sweats and him flailing around. It is super nerve-racking when he is having an episode yet all of the his stats just look like ➖➖➖ on the monitor. We also met with the pulmonologist at the end of the day. This was his first look at James, besides g...

Friday, May 21st, 2021 New nurse today who had never had James before because she had a primary previously who just went home. James welcomed her in with an episode in the morning and several more throughout the day. James had speech therapy and physical therapy early this morning. They tag teamed at the same time.  ENT also stopped by to check on his trach site, which looks good. She helped us sort through and organize the five trachs we have in the room; putting most of them in a drawer. Now we have the correct emergency trach hanging up!  Mom was holding James for about 2 hours and around 2:00pm he ended up having a pretty bad BPD episode. Mom put him back in the bed James turned purple blue and desated into the 40s. He had several episodes throughout the day but this was the worst one (at this point). James sat up in his boppy and was very alert after Mom handled trach tie change with the RT. He would rather sit up than lie down. Around 6:30pm right before shift change Jam...

Thursday, May 20th, 2021 James is 20 weeks old! (5 months? Or do we wait for the 31st of May? No one knows..) Overall James had a good day with only a few events. He got weighed this morning and is now 4880 grams (10lb 12oz). We are almost there! Update on the G-tube situation: They are working on getting the non-balloon option. Should be in sometime next week! This was recommended to Mom by another Trach/Gtube Mama when she reached out to her FB group. It also helped that our nurse advocated for us! MiniONE Non-Balloon Button Here are his updated ventilator settings: James is due for an ultrasound of his heart. These are typically monthly when babies are on ventilators. He will get this tomorrow. Mom is starting to wean on the pumping. It is just not going to be physically impossible being James's primary nurse 24/7 and being able to keep up with pumping and washing bottles. It is super sad because this is not what the plan was but then again none of this was planned. James has al...