The Journey of James Weston

Wednesday, June 30th, 2021 Morning: James had lots of snuggles by RNs and Therapists in the morning.  Our Care Conference was at noon. To make a long story short we are going to the PICU on Friday and will be leaving the NICU for good. We will be very sad to leave our Primary Nurse and a few others. 😭 This is what's best for James and it will also get us closer to discharge. Even though they still have RSV they are saying it is not too bad in the PICU but still on the floor (🤷). So James is due for another synagis shot. Evening: Mom and Dad went out to dinner and when Mom got back she noticed that the Doctor was starring at her walking down the hall but didn't say anything and she thought that was odd. Well about an hour after being in the room the RN informed us that James had disconnected his oxygen, went down to 4 , and had to get bagged. This is the worst thing that has ever happened to him yet! This is why Mom normally does not leave the room. We understand that this is...

Tuesday, June 29th, 2021 We tried tummy time with Mom holding over a pillow but we were having trouble. Thank goodness one of the Physical Therapists walking by and we asked her if she could show us how to do it correctly. Super hard for James to do tummy time that only because he has a trach in G-tube but because the G-tube button is a little small for the hole still and leaks. Time will heal it make it a little bit smaller of a hole as well as thicken his stomach lining.

Monday, June 28th, 2021 Weigh-in: 6010 grams (13lb 4oz) Blood Gas: CO2 68.8 Height: 21.26 inches James had kind of a rough day. He had two BPD episodes during day shift, but we did not go up on the peep. Both of these were due to bowel movements.  James a special visitor from Cutco, one of Mike's top people, Jessica! Mike had a push contest and the winner was able to meet James. Just kidding, it's Jessica folks no contest needed! Mom approved and she said she was honored to meet him! 🥰 Adorable photos below. Night Shift: This is the first night where the Night nurses spilt their shift in half at 1am for overtime hours. Sounds like an awful idea but they are short staffed at night. Why do Monday nights sucks so much?! Early evening James was a happy baby, and he let his melatonin kick in. 11:30pm -2:00am - Mom slept for 2½ hours 2:00am-2:45am - James desats into 60s, no one came in. Mom suctioned and changed his diaper. The buddy nurse steps in to ask if Mom needs anything. Min...

Sunday, June 27th, 2021 Updates/Changes: We have weaned his methadone from .2 to .15 . To offset this we have increased his clonidine. Clonidine is not an opioid and is much easier to wean so when the time comes it will be a faster process. Our doctor had the GI surgeon to stop by to take a look at the bruising on his scrotum (where he had the hernia and hydrocele surgery). He said that everything looked fine at this point. Currently there is bruising and a noticeable size difference. James has been very sleepy, but not lethargic. He would just rather sleep. Even if he sleeps for the majority of the day now, he still has a good night. This could just be due to recovering from his surgery and fractures, being more comfortable overall, or growing. After all babies do sleep a lot! James ended up throwing up towards the end of day shift. He doesn't really get a break his last bolus feed is from 4:00pm to 4:45pm and then his continuous feed starts at 6:00pm. We've noticed that after...

Saturday, June 26th, 2021 Updates/Changes: Continuous feeds were increased to 38ml/hour. Bruising on the left side of his scrotum is bruised and discolored now. Morning: Dad got to read the Lorax and get some quality time with James. Never too early to influence this little man to see that he can create positive change in the world that he lives in. After showing the pictures and reading the story, dad held James for two hours before leaving. They reviewed all of the fun activities that they are looking forward to.  Afternoon: Dad headed out of town for a few days. James slept for the majority of the day. His Primary Nurse and RT took good care of him until Mom was done doing the 85th load of laundry. Evening: James was a little restless so after suctioning we did a diaper change. He peed like a fountain during the diaper change and we then needed to change his onesie and bedding. He was still agitated so we used the 60cc syringe to vent his GTube to release some gas. During this h...

Friday, June 25th, 2021 James started off the morning projectile vomiting on his Primary who just returned from her week off. So this morning we did bath and trach care earlier than expected. Today James is sportin one of his new onesies Dad got for Father's Day along with his converse sock sneakers! It taken take very long for his G-tube to leak and change into another outfit. His G-tube just needs time to heal and for the stoma to get smaller. He is a very happy baby wanting to be held and cuddled all the time. In the evening Mom tried sham feeding with James. This was the first time James was put to breast. Sham feeding is when the Mom pumps and empties first so that no milk will come out when the baby is nursing. At this same time James is getting fed through the G-tube so he is feeling full. It took a couple of times for him to latch and understand the difference between the pacifier and a nipple. We have not had a swallow study done to determine if James is able to coordinate...

Thursday, June 24th, 2021 Measurements: Weigh-in: 5970 grams (13lb 2oz) Length: 21.06 inches Blood Gas: 58.7mmHg Updates: Care Conference is scheduled for Wednesday, June 30th at 12pm. We need to get everyone on the same page and start talking about going home. Get James on the trilogy for trials and talk about vent settings. 🫁 James now pees very far. We've had to change the bedding 5x in the last 2 days. It's like a fountain! ⛲ At this point we have removed all IVs due to failing to flush. 💉 He has not had any Morphine since Tuesday. We weaned again on the Methadone. 💊 James has been doing a lot better overall with his BPD episodes and has been able to self soothe. He is getting good stretches of sleep through the night also! 🤩 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