The Journey of James Weston

Monday, February 15, 2021 Update :   James is tolerating his feed extremely well and has been bumped to 30 ML per feed. As we went over in a previous post, that equals 1 ounce  😉 This means James is getting 240 ML per day or 8 ounces. At 26 calories per ounce, the math is way easier now. 26x8=208 calories per day that James is getting. He is also growing at approximately 50g per day, which is healthy rate. He weighed in at 1410g last night, or 3 pounds 1 ounce.  Mom also his a huge milestone last night with having her FIRST GRAND DAY!  She pumped over 1000 ML for the day (1010 ML) which is over 33 ounces!  Mom is crushing it with pumping. We have our deep freezer filling up with bottles. Approximately 150-160 bottles are in there for approximately 300 ounces (almost 10000 ML) stored up at home, plus another 3000 or so frozen at the hospital.   James does have anemia due to his Hct level getting down to 26. This means he’s very close to need...

Sunday, February 14, 2021 Morning : Happy Valentine’s Day to James!!!  He got a special gift with being held by Mom today!   Look at these two!! ... James is doing great and responded so well to his Kangeroo time with Mom.  James is now snug in his bed with his new hat made by a volunteer.  James also weighed in at 1380g last night, putting him just over 3 pounds!  Huge progress over his 1 pound 4 ounce weight at birth. 

Saturday, February 13, 2021 Morning :   James had a really good night with his new ET tube.   He was at 39% FIO2 today. His skin is nice and soft, showing no signs of edematous (I was going to use the word swollen, but this is a new word for Dad and I had to use it so I can feel smart 📚🧠 ). He weighed in last night at 1330g and is pacing steadily towards 3 pounds soon. Today the feed was increased to 28mls! (This is every 3 hours, 8x a time) We are very close to Mom’s first kangaroo-care (skin to skin) which should happen in the next few days or sooner. Mom has been a diaper changing champion, while Dad is holding his own with 4 victories so far (I am still an amateur with growing confidence).  We are waiting for James’s X-ray results to come back. He still has the IV in his hand just in case he needs anything else. The diuretic is put on hold for now. He’s still getting his blood gas every 12 hours. 

Friday, February 12, 2021 Morning :  James had a new  endotracheal tube today.  The increased size is going to help James with his oxygen levels and lung development.  He also needed  an IV put in on his right hand because he needed several medications for this procedure.  He’s responded well to it so far.   James is getting some therapy after the procedure from his other doctor ... Dr. Seuss. 😊 He’s resting right now and is doing well.  FIO2 55% and high stating for now. Still tolerating his 27 ML of feed.  Weighed in last night a 2 lbs 14 ounces or 1300g. Maybe this weekend he will hit 3 pounds, which is another fun milestone to celebrate. #SmallWins #Progress    Evening: James  weighed in at 1330 grams (2lb 14oz). FiO2 staying around 40! He seems to like the bigger tube. While making adjustments to his oxygen they will need to closely monitor him, which means more x-rays and blood gases. During his diaper change this evenin...

Thursday, February 11, 2021 Update :  James is 6 weeks old today (32 weeks gestational) and is staying steady.  He is tolerating his feeds, he is having bowel movements, his blood levels are pretty solid, his oxygen levels have been fairly consistent, and he is growing. At the moment, we are holding onto the cautious optimistic approach that we have had since the beginning.  A few specific updates :  HCT 27.9 (looking at this number to determine blood transfusions) 💉 FIO2 range between 45-55% 🌬️ 27 ML of feed 🍼 Weight is 1300g (2lb 13oz) 💪🏻 Morphine increase by 20% due to slight restlessness overnight. 💊 Kangaroo care (skin to skin) 🤱🏻 is on the horizon very soon. They would like to do this during the day when several doctors, nurses, and respiratory therapists are around because of the oxygen support needed. It's been 43 days and we still haven't been able to hold our son for the first time. We understand that it is a process and want to make sure he is heal...

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 ...