The Journey of James Weston

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 ...

Sunday, March 21, 2021 We gave James a bath at 2am this morning. We didn't want to wake him at 8pm for it, so instead we waited till 2am, lol. The night nurse had never given a tub bath to an intubated baby, so Mom ran the show. She got to sleep around 4:30am. 😩 James had his 2nd vaccine today which was actually a 5 in 1 shot; diphtheria, tetanus, and acellular pertussis (DTaP), hepatitis B, and inactivated polio (IPV). No reactions so far! He actually got the shot when he was doing skin to skin with Mom. We had the whole thing planned, lol. Short cry but he was fine.  Last night James weighed in at 2805 grams (6lb 3oz)!!! The only other update for today is that he received a new neobar, which is the ET tube guard. Same size as the old one since it's the rose color one but it was falling off his face. So we decided to go ahead and remove everything from his face to clean him up. This means we also changed out his NG tube. Getting prepped for his new neobar. Sleeping in a new p...

Saturday, March 20, 2021 We will just say this... We see both sides to the vaccine argument. 💉 We are also in a situation we didn't expect to be. 😟 To give you idea, we originally wanted to have a natural birth in 2019. 🐶🌈 Well we are far from that now! More on that in another post. With James most likely heading over to the PICU for a trach surgery in a few weeks, it has been recommended that he gets his 2 month shots before being around the “older kids". We also wanted to spread these out as much as possible to have enough time to see if there are any reactions with a 2 week wait window prior to surgery. We were told by the doctor that we would see reactions the same day, so he wanted to spread these out by 24 hours. Is that enough for a baby who is 37 weeks gestational? Who knows... Anyways James had his first vaccine today (PCV13) on his left thigh. Oh boy he didn't like it! Poor baby let out a silent cry since we can't hear him. 😭 He is now understanding that...

Friday, March 19th, 2021 With the recent events and information that we have received in addition to there not being many updates today, we thought it would be a great day to be grateful for all of the things James has going for him! ❤️ Yes James has had several blood transfusions🩸for anemia, had to be on antibiotics for an infection 💊, and has had respiratory distress 🩺 which has led to broncopulmonary dysplasia 🫁. But he lucked out on a few things that are common to micropreemies..... 👁️👁️ His eyes! James is doing well on his eye exams. He has been opening his eyes more and more everyday! Some micropreemies get Retinopathy of Prematurity which is abnormal growth of the blood vessels in an infant's eye that can cause blindness. He is currently at Stage 1, Zone 2 and should have another exam on 3/23. 🧠 His brain! James has never had a brain bleed, which most nurses has let us know is amazing! An intraventricular hemorrhage (IVH) is bleeding into the fluid-filled areas (ventr...

Thursday, March 18, 2021 James weighed in at 2645grams (5lb 13oz) last night!  Growing boy! Today Daddy held James for just about 3 hours while singing songs 🎶 of Elvis, Goo Goo Dolls, Smash Mouth, Marc Cohn, Eminem, and Biggie Smalls. Baby James was feeling it. Check out the video below! Dad will be out of town this next week for some business meetings in Miami. It's time for Dad to go back to work. 👨‍💼 Mom will be holding down the NICU. This evening James is experiencing his first Tampa Thunder & Lightning storm! 🌩⛈ Ventilator #s Update: FiO2: 48 PEEP: 14 Rate: 40 (James is ranging anywhere from 40‐72; this is the backup rate. That means at 40 he isn't doing anything on his own.) Tidal Volume: 17 All of these numbers are relatively high, especially the PEEP which is the pressure. Future Bone Scans Another thing we haven't mentioned yet on our blog is that we have been concerned about his limb length and recently mentioned this to our Doctors. Obviously with having...

Wednesday, March 17, 2021 Update :  James got to play dress up today for Saint Patrick’s Day ☘ after his bath. He gets to have tub baths on Saturday evenings and Wednesday mornings. Cute Irish outfit made by NICU volunteers! James is at least a ¼ Irish 🇮🇪! He is also German 🇩🇪, Russian 🇷🇺, Polish 🇵🇱, and Jewish 🇮🇱, with a small percentage of a few others!  James overall had a good day. His FIO2 has been between 50-54% most of the day.  No changes to his ventilator settings. Mom and Dad had another lengthy conversation with the doctor today about the tracheostomy. Unfortunately it looks like even with another round of steroids James would not be able to be extubated which is the goal of a 3rd round of steroids. There are pros and cons to every single thing. For example, the 2nd round of steroids (2/21‐3/3) helped James lower his FiO2; however, each additional round of steroids could possibly cause neurological issues. So unless the next round of steroids ...