The Journey of James Weston

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...

A few weeks ago Juju and Robin visited us in Tampa. They whipped up a baby nursery like Fairy Godmothers while we were visiting James at the hospital. Below are some photos. There is a lot of sentiment in the room as a lot of things were handmade and/or passed down. 🥰 Unfortunately with all of the tracheostomy and ventilator equipment the nursery will most likely end up looking more like an ICU once we get James home. We will need to do some rearranging, since there will be a lot of storage bins to keep organized. Click on this link to get an idea of what we are expecting... Images: Trach and ventilator setup for nursery Until then.... Welcome to the Nursery! Rocking chair was painted by Pop-pop Fallon and used by Juju. Because James is a Capricorn Book Nook and Painting by Great Uncle Sid Juju encouraging James to be a Batman fan. Also his first train. Needlepoint alphabet by Juju and Embroidered pillow by Nana (circa 1983) Wicker Dresser set from the Fallon Childhood Bedroom Stork w...

Wednesday, March 24, 2021 Approaching his due date in about 2 weeks, tomorrow James will be 12 weeks old. Remember, he was born 14 weeks early back in December. 🕐 We scheduled our care conference for Friday afternoon. During this meeting Mom and Dad will be able to sit down with a couple of people from the hospital including the Director of the PICU, the pulmonologist, our social worker, and our patient care advocate. This will give us a chance to ask any questions or concerns regarding tracheostomy, next steps, and settings expectations. 🤱👶🫁 Update: Increased clonidine to every 4 hours from 6 hours to help with restlessness and irritation. Increased Tidal Volume to 19 FiO2 ranging from 43-55  Tonight weighing in at 2980 grams (6lb 9oz) Recently his feeds increased to 50 ml If anyone is interested, Mom just watched this 1 hour Zoom Seminar from a Pulmonologist on Bronchopulmonary Dysplasia, "The chronic lung disease of infancy". 👩‍💻 She thought it was pretty helpful but...

Tuesday, March 23rd, 2021 In honor of National Puppy Day, we wanted to share some photos of Jimmy's older Brother Tommy keeping up-to-date on the blog. He is currently staying in Jacksonville with family: Juju, Aunt Robin, and Uncle Champ.   Morning: James had another successful eye exam. He is now at Stage 1, Zone 3 and has improved from Zone 2. We will do another test in 2 weeks. This is the first time that Mom was in the room for the exam. All of the nurses had warned not to watch it. They first gave Baby James dilation drops an hour before the procedure and then numbing drops right before. They then open the baby's eyes with a speculum. James cried silently since we can't hear him with the ET tube. He gained 10 grams last night and is now 2855 grams. Evening :  After over a 3 hour hold with Mom, James got his new bed rotation tonight. So, he’s back to the higher tech touchscreen bed. James will get his next bath tomorrow. He weighed in tonight at 2920 grams (6lb 7oz)! P...