The Journey of James Weston

Wednesday, February 10th, 2021 Morning: Weight: 1230 grams (2lbs 10 ounces) Quick Notes from convo with the doctor: Echocardiogram Results from 2/8: -Continued to show the trivial anterior pericardial effusion -NEW find, small *PDA not noted on prior echos. This was closed and now is open. *Patent ductus arteriosus (PDA) is an extra blood vessel found in babies before birth and just after birth. In most babies who have an otherwise normal heart, the PDA will shrink and close on its own in the first few days of life. If it stays open longer, it may cause extra blood to flow to the lungs. Also slowly weening morphine by keeping the same dosage but increasing his weight. We are considering every day a win with everything essentially staying stable. Afternoon :  James is still doing well. We are getting closer to his first day doing skin to skin with Mom. We are shooting for this weekend sometime, assuming things stay the course.  James is growing steadily and is getting bigger. O...

Tuesday, February 9th, 2021   5 weeks old Gestational Age: 31 weeks + 5 days James had his first eye exam this morning called a ROP test (Retinopathy of Prematurity). He is now sleeping like a baby and high-stating. 👶🏻💤 In babies born early, normal retinal vessel growth may be disrupted and abnormal vessels can develop. This can cause leaking and bleeding into the eye. ROP has no signs or symptoms when it first develops in a newborn. The only way to detect it is through an eye exam by an ophthalmologist. 👀 Although a high percentage of examined babies will show some degree of ROP most will not require treatment. Nevertheless, premature babies require lifelong followed by an ophthalmologist because of their increased risk for eye misalignment, amblyopia, and the need for glasses to develop notmal vision. Two factors influence vision loss from ROP: the amount of retina that is underdeveloped of the time of birth and the severity of the disease. The redness divided into Zones 1, 2...

Monday, February 8, 2021 Morning :   James had another good night, especially living in “Champa” Bay.  🏆     He gained weight and is now 1245g, or 2.7 pounds, or 2 pounds 11.9 ounces. This is great progress for James and will now begin feeding on 26 ML starting today. He is 13.39 inches or 34 centimeters. This means that James has grown 2 inches and gained 1 pound and 8 ounces since birth a little over 5 weeks ago.   His temperature is good. His blood gas is good. His FIO2 has been between 50-55% today, which is down from the mid-60s last night. PEEP is 12. PIP is 38.  Overall, James is doing well. #RestGrowRepeat X-ray is still looking good for him. Echo results will be back tomorrow.  Vitamin D was 37, which is on the low end of normal. So they are adding a small amount of supplement. He is getting his multi-vitamin  once a day and is getting the Vitamin D twice now. His calcium and phosphorus levels are good.  He mov...

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...