The Journey of James Weston

Sunday, February 7, 2021 James is stable and ready for his first Super Bowl today. He’s been tailgating with 25 ML of Mama’s milk and his FIO2 of high 60s (which is slightly high, so we are hoping he cuts back a little bit!).  Not much change at this moment. Mom and Dad will be enjoying the Super Bowl 1 block from the stadium. Lots of traffic around here. Also, lots of Tampa pride.  Dad had to join in and snag this photo of the stadium.  Here’s our actual seats for the big game: Evening Update : FiO2 down to 55 at the moment while high-stating ...and continuing to go down slowly! Mom changed another messy diaper during hands-on tonight. After that he went right back to sleep. Congrats to Tampa Bay! James will be proud to wear his new baby Bucs jersey from Juju. 🏴‍☠️🏈🏟️

Saturday, February 6, 2021 Update :  James is doing good. He’s up to 25 ML of feed. Oxygen levels went up a bit, but he’s doing fine. His temperature was going a little high, so they opened the incubator for 20 minutes to cool him off, which helped regulate his temperature.   Last night, we had another family zoom with Auntie Taylor and Mark, along with Auntie Robin and Juju, with special guests Champ and Tommy.  Mom and Dad are beginning to get into a rhythm with pumping, cleaning the parts, self care, and visiting with James. Another few days (maybe a week) and we should have a working routine established. For now, we are just tired (mostly Mom) from not getting a full 6-8 hours of straight sleep since ... hmm ... maybe Thanksgiving.  😴 Mom is pumping so well too!  Our deep freezer is filling up and the hospital freezers are still full. But, we worked it out with the doctor and staff to give fresh milk instead of frozen due to having more antibodies...

Friday, February 5, 2021 Afternoon :   James is having a really good day. Even though his pressure increased, his oxygen level went down dramatically!   He is responding REALLY well to the JET oscillator. His FIO2 went from 70s to 50s down to 30s over the course of the past day and a half. We are very pleased with this update.   James is up to 23 ML of feed and is tolerating it well still. He’s also gained some more weight and is at 1105g or 2 lbs 7 ounces. When he was born, he weighed 1 lb 4 ounces, so he’s approximately double his weight in his first 5 weeks, which is another great update.  His blood is still good, so no transfusion needed yet. He could use a bowel movement since it’s been approx 12 hours without one.  A few other updates :   Dad did his first ever diaper changer today. As in ... FIRST EVER DIAPER CHANGE.   Not first on James ... First EVER.   It was not captured on video or photo due to this being a moment that wa...

Thursday, February 4, 2021 Morning :   James had more of an eventful night than we anticipated. His oxygen and carbon dioxide levels increased higher than desired. Even though his X-ray looked good, the doctors felt it would be appropriate to put James on the JET Oscillator (I’ll debrief this shortly) to help with his lungs.   His FIO2 went from 45% to 60% and his CO2 went from the 50s to the 70s.   His blood still looks good, so no need for a transfusion still. His bowel movement is good, so his feed has increased to 22 ML for today.   What’s the JET?:   We are FAR FROM EXPERTS on this new machine, so this will be an elementary, and possibly slightly off explanation, but we shall see.... The JET gives James the lung support he needs due to the chronic lung disease he has. It designed to open up the tiny air sacs in the lungs called the alveoli. The alveoli are where the lungs and the blood exchange oxygen and carbon dioxide during the process of breat...

Wednesday, February 3, 2021 Morning :  James is having a solid start to his day again. X-ray came back with good results showing that his lungs expanded a little bit. We still have a way to go, but progress is worthy of celebration at the moment.  💪  His tube in his mouth was sitting a little high, so the reparatory team had to adjust this a bit, which could cause a little agitation to James - which is why some of his oxygen levels were a little bit high during the start to today.   The blood culture from a few days ago is still showing negative, along with the urine culture. At this time, this would mean there’s no infection showing - another win for today! 💪 His Vitamin D result hasn’t returned yet due to a slight delay, but regardless of this result, there wouldn’t be any immediate changes to James at the moment.  Before deciding on the blood transfusion, James had his hemoglobin and hematocrit checked directly to get real numbers.  The ...

Tuesday, February 2, 2021 Morning :  James had another good night and start to today. After weighing in at 1050g last night, he was able to have two bowel movements, which is great.   Since he’s tolerating his feeds, they will up him 20 ML later on today. He’s growing steadily and is staying consistent with his settings on the oscillator. He will have his blood monitored today and tomorrow to see if a blood transfusion makes sense this week. Overall, pretty steady for Baby James.  We are still waiting for the ECHO results at the moment.  FIO2 : 42% Amplitude : 22-23 Pressure :  17.2-17.4 Afternoon :   Blood gas showed hematocrit at 29. If this gets lower than 25, Baby James will get his blood transfusion. If that is needed, his feeds will seize again for 1-2 days, which could cause some weight loss. The doctor will make decisions based upon what James needs and the information they get. They moved his blood gas from every 12 hours to every 24 hou...

Monday, February 1, 2021 Morning: James is having a great start to his day. “Any day without bad news is a great day!” According to the doctor taking care of James right now ... and I agree!  This roller coaster ride of ups and downs has been an emotional ride (to say the least) and a little plateau is a chance to catch a breath.  This doctor is truly doing a great job with James, and has great bedside manner with mom and dad. She sits down when she speaks with us and expresses true empathy. This approach has been refreshing and unique.  She will be ending her care with James on Wednesday, but she will return to him the following Thursday. She will be our first repeat doctor.  There’s 11 doctors in the rotation and she was our 5th. We will get a new doctor this week, being our 6th, and then return back to who we have now. We feel comfortable with her approach, so it’s slightly refreshing. What we also like is how all 11 doctors communicate regularly about every baby ...

Sunday, January 31, 2021 Morning : James had a pretty great night says thr doctor. "The best he's had since I took him over on Thursday."  We like that this doctor has taking all the necessary precautions that James needed.  And as it turns out, they were all just in case there was something serious that James was facing (due to his symptoms and signs he was showing).   Specifically, the adding of the two antibiotics, taking James off feeds, adding the IV, the blood culture, urine culture, and the increased blood gas tests were all to monitor and ensure that James did not have any serious infections. Granted, all of these are fairly invasive, including poking James with needles in his arms, legs, and feet, along with adding a catheter, they were necessary in order for us to ensure there is not any infections.   We are grateful that there was not one that was found and the symptoms (lethargy, higher oxygen requirements, higher CO2, slightly higher temperatur...

Saturday, January 30th, 2021 Results from Blood and Urine culture 🧫 show no growth, so today will be the last day for the antibiotic. They had started the antibiotic just as a precaution. Feeding reduced to 9mls from 19mls because of the blood transfusion he had yesterday morning. Holding steady has he rests and grows. Oscillator stats: Pressure: 18.4 FiO2: 64% Amplitude: 27 The blue octopus has Mom's smell on it. 🐙 Lindsay's family from Jacksonville came down this week to help with setting up the nursery, taking down the Christmas tree, making meals, and watching our Chihuahua to allow us to spend more time at the hospital. 

Friday, January 29th (Busch Gardens Sheikra -  Climb 200 feet to the edge of a 90-degree drop that inches you mercilessly over the edge—and stops. Then surrender to speed as you dive straight down into a 70 mph roller coaster whirlwind with an Immelmann loop, a second dive into an underground tunnel and a splashdown finale that drenches SheiKra  fans waiting to catch their own piece of the fun.) Morning :  James had quite the eventful night. Before getting into the details, it’s important to note that James is a fighter, he’s strong, and he’s getting the best care that he can receive. I’ve witnessed over the past few weeks many different hospital staff members work on James and the systems of communication, overall care, and gentle approach for James and us has been excellent. Every morning, we get an update from the doctor. Every stat is updated to our portal almost instantly. Every question we ask gets answered. Every time we want touch time it’s granted.  ...

Thursday, January 28th, 2020 Morning: Today we celebrate James being 4 weeks old and 30 weeks gestational. This morning, weighing in at 2 lbs (925 grams), our little guy is making excellent progess... But we are still on this roller coaster ride, so he had a minor setback this morning. Due to the O2 levels wavering and being unstable, the steroid ending yesterday, the doctor doesn't like the trends that James is showing. So Baby James is now back on the oscillator. Stats of this morning: Amplitude 26 Pressure 14.5 FiO2 52% Photo: Oscillator  Every setback pays the way for a comeback. As long as Baby James continues to accept his feed, he will keep growing. With growth and time, his long development will follow suit. The next four weeks will be filled with more ups and downs and many other small wins. Mom and Dad will continue to "hurry up and wait". Patience and faith will be needed, along with cautious optimism. We got this! James has this! Evening: Updated weigh-in at...

Wednesday, January 27, 2021 Morning: James got his incubator turned around this morning and rotated a full 180°. New scenery for the little guy. The room looks bigger without the oscillator and moving the new ventilator to the side of the incubator. Overall, James is good. His levels are fluctuating up and down right now. His FiO2 is 40% which is fair. He had a bowel movement this morning on his own and will be bumped up to 19mls later today. The nurse thinks he is close to doing skin to skin. The nurse gave us a recordable storybook to play our voices for him. Today is the last day getting weaned off the steroid. This usually makes the stats fluctuate. Possibly could see him back on the oscillator depending on how James does. Some respiratory and weight goals with the new ventilator: PEEP : 5-6 (currently at 7) Set Rate (SIMV): 20-25 (currently at 40) O2 : 30-35 Weight : over 1,000g Before After Evening: Did a 2nd blood gas (heel stick) due to a higher reading this morning. This one ...

Tuesday, January 26th, 2021 Morning: The news came earlier than we anticipated and what a great start to the day!  Since James had a great night with his bowel movement, his blood gas, his X-ray, his amplitude, his FIO2, and his pressure, Baby James has moved from the High-frequency oscillatory ventilation to the conventional ventilator this morning around 9am.  We are very pleased with his progress as the steroid is winding down to the final day.  He is that much closer to skin to skin and breathing on his own.  It is also much quieter in here now.  It's going to be a nice change for all of us so we can have more intimate book reading and conversations with our little buddy.  James also got wind of the Bernie Sanders memes going around, so he now gets to wear some cool mittens too. 😊  Mom and Dad got to join James at the same time the top of the incubator roof was up, so we got some great hands on and a few great photos.  With James getting...