The Journey of James Weston

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...

Monday, March 22nd, 2021 Weighed in at 2845 grams (6lb 4oz). They are looking for him to be at 3,000 grams in order to be scheduled for the tracheostomy. James had an x-ray this morning. The results show what they would expect from having typical broncopulmonary dysplasia. So overall, not great and still white and inflamed. He had his 3rd and final Round of 2 month Immunizations. Today was his Hib vaccine.  Tomorrow James has another ROP exam for his eyes. Recently he has not been tolerating his tube as he is getting bigger and more aware. James is constantly trying to gag out the ET tube as well as use his tongue to push it out. It is really hard to watch. The length of the tube is also much shorter now which doesn't allow him to turn his head, which prohibits his development. Maybe they make these tubes shorter on purpose so that parents are more inclined to opt for the trach asap. 🤔 We have asked the doctors if they could increase any of the sedation like morphine or clonidine ...