The Journey of James Weston

Thursday, July 1st, 2021 Today we are celebrating James Weston's 6th month Birthday 🥳 and saying Goodbye to the NICU. 🎓 Tomorrow we will move to the PICU across the street where we will eventually get discharged. ✌️ We know that this is what is best for James but we'll be sad to leave our awesome Primary nurse, Rejine*, and a few others who have become family here. 😭 Posting a link to his Birthday Trivia if you want to take a shot at it! We'll announce the winner on the blog! 🥰 * Who has consented to be on the blog. Trivia: bit.ly/JamesWeston6months James didn't really take any naps today as he has severe FOMO (fear of missing out). He ended up getting a bath, then we did trach ties, followed by a graduation photo shoot. Mom and Dad brought in sugar cookies from Publix for the staff. Dad wanted to point out that they had "Jimmies" on them. We had several nurses and RTs stop by the room and try their luck at the James Weston trivia game. Some of the questio...

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...