The Journey of James Weston

Wednesday, March 31st, 2021 James has his surgery this morning, he is 38 weeks gestational. Originally scheduled for 8am, then 9:30am, and they finally brought him back at 10:30am. Ventilator Settings: His PEEP was changed from 14 to 12, and his tidal volume was increased from 19 to 24. They will be doing a PICC line right after surgery. Since a lot of times babies' IVs will fail, the PICC line will ensure he's getting the sedation he needs. They'll be placing this in his thigh. As they wheeled James off for surgery Mom and Dad stayed in the room and hysterically cried in each other's arms. 😢😭 11:45am Update: An RN called from the OR with an update...Surgery started at 11am. As of 11:45 the G-tube surgery is complete and went well and the tracheostomy surgery is 5 minutes in. ( Mind you we were told by a nurse that the OR is trying to reach us and we need to get on the phone with them. We immediately thought the worst because we didn't expect a phone call with an ...

Tuesday, March 30th, 2021 Early Morning:  James had physical therapy but did not tolerate it very well. Unfortunately our PT missed a really great morning where James actually stood for the first time. We don't have a photo of it but it happened. Mid-Morning: Early this morning we found out that James is getting scheduled for surgery for tomorrow!! There was a last-minute opening so this morning everyone is rushing around to coordinate this. Today we are signing consent forms with GI, ENT and Anesthesia. James will be getting a tracheostomy, a g-tube, and possibly a circumcision. The circumcision may or may not be done because it is swollen. Although it would be ideal to get this done while he is on anesthesia we wouldn't want to do something out of convenience if it is not the right time and could possibly need to be redone later. Our nurse made his tape into a Football today. 🏈 (Those are not stitches) Afternoon:  Boy, it was a whirlwind of an afternoon! Non-Stop since 10:0...

Monday, March 29th, 2021 Xray this morning showed no real changes. Last night he weighed-in at 3150 grams (6lb 15 oz). Other than that he just slept all day and enjoyed his new swaddle that Mommy bought him from Lou Lou and Company. He loves a stretchy swaddle! #softestever James bought the nurses some amazing Columbian pastries from a local place down the street. We brought them in since we had one of our favorite nurses on Day Shift today!  Getting some morning rays ☀️ Slowly getting his arms out...

Sunday, March 28, 2021 Jimmy likes the night shift. 😴 He sleeps during the day, and is awake at night. ⏰ The only change for today is that James' feeds increased to 54 mls. Dad was able to get some work done while Mom held for 2½ hours. Dad also read him some new Dr. Seuss. 📖 James is so appreciative of all of his books that he has received! 😘 Thank you to the Busillo's, the Biggs', the Vincent's, fellow Capricorn 🐐 Mags, and "Aunt" Brittany. 📚 Blood gas this morning was 67.2 🩸, which has gone up a little bit. Blood gases are currently every 48 hours. His FiO2 has been ranging between about 43 and 50. 🫁 The milk room is still trying to figure out the best process for "making the milk" (which is added fortifier to the breast milk). They were originally doing this internally in the milk room, then they had the nurses doing it in the individual rooms, then moved this process back to the milk room to avoid the chance of infection.🍼 Unfortunately,...

Saturday, March 27, 2021 Last night we had the ENT group stop by to do an assessment on James. This morning our doctor on call answered a few of our additional questions regarding surgery he also let us know that it would be a good idea for James to get his circumcision while they're doing the trach and the g-tube. We had no idea that normally little boys are not put under anesthesia for that. So we are happy to give him that at least.  The Nurse Practitioner from the GI group also stopped by to talk with Mom regarding him getting a G-tube. This afternoon one of the Gastroenterologists stopped by just to see if we had any questions. Depending on schedules he may or may not be doing the surgery. Everyone is super nice, informative, and is able to answer all of our questions. They will be looking at his last echo and EKG to assess whether or not he needs a cardiac anesthesiologist or general anesthesiologist. Today James had a 2 ½ hour skin to skin with Mom. We are still researching ...

Friday, March 26, 2021 Today we had our Care Conference that went really well. We met with the Pulmonologist, our Social Worker, NICU Case Manager, PICU Director, PICU RN, our Patient Care Advocate, and our NICU Doctor in a conference room for an hour and a half. They answered a lot of the questions that we had and now we feel more informed and very supported. In summary, we left the meeting getting his surgery scheduled for about a week from now. They will be doing a tracheostomy and a g-tube at the same time which makes scheduling tricky finding availability for both doctors. His weigh-in tonight is 3050 grams (6lb 11oz)! A few of the questions we prepared for the Care Conference and the answers we received. What are the stages and steps to get discharged and go home?   James needs to be at 5,000 grams in order to get on the home ventilator. His ventilator settings need to decrease. What is the timeline for ahead/behind compared to other children for brain function and beh...

Thursday, March 25, 2021 Today James has just been resting up! He had another 3 hour hold in the morning with Mom. No real changes on the vent, just a little drifty. He already has a leak again, so it sounds like he is snoring. He weighed in at 3010 grams (6lb 10 oz)! James likes to be snuggled with pillows filled with beans called "frogs". Registry Info: We've had people say they lost the Registry link or ask our family members for it, so we are sharing that here . https://www.amazon.com/baby-reg/ZWMKSIU1B8V8 We would like to thank everyone that has sent us stuff!!! Wow! It is so nice to see the love from everyone from all over! We thought we would be able to have thank you cards out by now, but we also thought we'd be home 3 months later. Well we are still in the hospital and that newborn photo shoot hasn't happened. So we apologize, but trust me we have a spreadsheet going! We truly appreciate everything that has been sent and the amazing messages of support. W...