The Journey of James Weston

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...

Monday - January 25th Morning :  Amplitude is 25-26, Pressure is 12.4-12.5, FIO2 is 33.5% and James toletated his largest feed kf 18 ML.  The doctor is pleased with the progress that James is making. Things are looking really good right now. On a completely separate note, dad had a first today... The lunchroom had a special guest today hosted by Chick-fil-A and Mike has never been exposed to the delight treat of their snadwiches due to being vegetarian for the better part of the last decade.  But due to a few lifestyle adjustments, Mr Mike gave himself permission to enjoy a chicken sandwich with some delicious Chick-fil-A sauce - YUM!  Wow 😳 it was tasty.  Evening:  James is doing great. His bowel movement was so large that it filled up one diaper and while the nurse was changing him, he started pooping again mid-change!  Huge poop for Baby James.  All stats stayed the same from this morning.  Due to getting weighed after his poop and before...

Sunday, January 24, 2021 Baby James continues to progress.  Oxygen he is getting (FiO2)- averages 33.4% - 35.8% (last number is most recent) Pressure - averages 13.8 - 13.5 (last number is most recent) Amplitude - 26 He is sleeping on his stomach right now, which is best for him to get the most oxygen to his lungs. James has his octopus laying next to him wearing one of the hats a volunteer knitted. When we walked into his room today we found his portholes were open. No one was in the room. Concerning to say the least. We closed them and immediately pressed the "Boost Air Curtain Button" which adds extra heat to the incubator. After mentioning this to the nurse, she told us that since his temperature didn't drop, he was fine. Other than that Baby Jimmy had "high-stated" at 96/97 on his oxygen reading for over 2 hours. Better than "low-stating", I guess. Numbers should be between 85-95. An alarm goes off if above or below that range. The idea is that wh...

Saturday, January 23rd Morning :  James is doing excellent right now!   Our little guy graduated to a larger diaper this morning due to his belly getting larger and his bowel movements too. His oxygen is down to 33% and the pressure is down to 14.1. He’s also tolerating the 17 ML of feed!   Such an exciting recovery from one week ago.   This little fighter is revealing a great story for this roller coaster of a journey.   For now, he’s resting and basking in his glory for such a great night and start to the weekend.  Evening: James had a very big bowel movement this evening in his diaper. AND still weighed in at 850 grams, gaining 25 grams since last night! Oxygen down to 35.3% and the pressure down to 13.5! He is on the right track.  (Pictures were brightened so you can see, it is actually very dark in the inbubator)l

Friday, January 22nd Morning : James is  tolerating his feed of 15 ML. Could use a bowel movement before 2pm, which will be 24 hours without one, or else they will be give James a suppository to help. His oxygen was at 47%, which is great progress. Amplitude at 30 and will get lowered to 29 today to see how James tolerates it. Pressure still at 15 until oxygen can get below 40%. Blood gas came back good. As of right now, James is doing well. He’s snuggled up nice and cozy today. .   We also had someone make us a beautiful 3 week card with hand prints from James. ❤️   Evening:    Baby James put on another 15g, now weighing in at 825g. He’s up to 16 ML of feed and tolerating it and will reach his max of 17 ML tonight, assuming he stays the course. His oxygen went down to 37% and amplitude down to 28. This is very great progress too. The suppository helped him with a large bowel movement, which it is common for these little babies to be slightly con...

Thursda y, January 21st WHAT DO THE NUMBERS MEAN? Morning : Happy 3 Weeks today!   Feed is at his best yet of 13 ML with 26 calories. His oxygen is right at 60% with 15 and 33 settings still. No change here. James gets a new doctor today.   We will see what the goals are for the next week.  Our targets are to be at 10 on pressure and 25 on amplitude with FIO2 between 30%-40%.  Hoping to get there this week.  While mom was at the doctors getting tested for what’s causing an allergic reaction and skin irritation, dad got some downtime with James.  Evening :    Weighed in at 810g. Feed is up to 14 ML now and will increase every 12 hours up to 17 ML since he’s tolerating the advances, James won’t be needing the TPN for now. So they are removing the PICC line tonight. Steroid is going in orally. Morphine will go in orally too. Gas came back positive so the amplitude went down to 31.   Echo results show that the PDA was closed.  Follo...

Wednesday, January 20th Morning :  Update from Doctor, James has stayed about the same on his numbers again.   X-ray had slight improvements again. Oxygen is at approximately 70% still. Removing antibiotics since his blood looks good. James had an echocardiogram done. Awaiting results on this.  Afternoon:    Mom executed another flawless diaper change. Dad did the temperature. We both got some quality hands on time with James today. We learned that placing our hands over Baby James keeps him calm and comfy, so we both did that for a little bit today. Dad also got to do a first ... putting a tiny pacifier James mouth.   It was precious!   We were also given little cloth hearts to wear today to get our scent on it and then put them in with James.   Mom is pumping like a champ still. So much so that the fridge AND freezer at the hospital are full. So, we were able to use one of the generous gift cards that we received and bought a deep freeze...

Tuesday, January 19th Update from Doctor, James has stayed the same on his numbers. -X-ray improved with increased support-on DART protocol. Slow feeding advance. PICC placed for meds -Q12 hour blood gases for now and prn. -Abdomen: Soft and mildly distended. No hepatosplenomegaly. +bowel sounds Update on Social Security Disability: James was approved for Medicaid coverage! They will use our health insurance as secondary coverage. We were also approved to get the $30/month for social security. (It was suggested to use that for diapers, lol). We will need to create a checking account for James so he can collect that.  Late Afternoon:    Up to 10 ML at 24 calories, which is great. Oscillator is still up to 15 and 35, with oxygen at 70%. These numbers are still high for right now. The steroid is not doing much yet, even though it’s reached its peak dosage and is now on the decline and slowly tapering off.   The prognosis: Wait for James to grow and he needs to fight!...

1/18/21 - Monday Each time I speak with the Doctor, for some reason the voice in my head goes to the game show announcer of The Family Feud. Not Steve Harvey, the small guy a few seasons before him. (It’s quite a specific voice - 😂). If you can imagine the voice with me ... it goes something like this in my head - in a low, calm, whisper of a voice, leaning in .... “Tell me something that’s showing progesss with James.” Then, while the doctor is speaking,  the voice interrupts my listening and yells “Show me ____” just like the game show announcer.  Today ... it yelled - “Show me Dark Spots” since that’s what we are looking for in his lungs... and ... DING!  It’s on the board!  And ... here’s the morning update: 😆  Morning : X-ray is slightly improved - bowel gas pattern looks normal and there’s a few more dark spots which shows more air in the lungs. Slightly less respiratory support - Oxygen level 50%. Feed is being tolerated - Up to 7 ML of feed. ...

1/17/21 - Sunday Morning : X-ray is not good. Lungs have whited out. Filled with air sacs and cannot see the dim locations showing it’s closed up. This is suggesting some sort of irritation. Needed 100% oxygen last night, so James is going to need the Decadrone steroid in small doses for the next several days.   He’s also having trouble with IV access due to not many more locations for it due to his size. Suggesting a PICC line to help with medication and feed for the next few days without having to prick him so often. However, if/when James needs another blood transfusion, the PICC line will not be able to be used for this.  He is tolerating his feed. Shows good signs for his intestines. Blood looks good. Afternoon :   We were excused from the NICU so they can put the PICC line into James leg. As I was briefly watching through the window, a nurse says “As a senior nurse I’m not doing this one. One of the new nurses needs the practice.” — EXCUSE ME!   She p...

1/16/21 - Saturday Morning :    Down to 58% on oxygen. X-ray is good. Fluid in spinal tap is clear and no sign of infection. Weight is up. Urine output is good. Feeding and IV nutrition is increasing. If culture comes back, then will remove antibiotics. C-reactive is normal. CBC for blood will be tomorrow. Feedings will resume at 4 ML at 24 calories today. When he gets back to 7ML again, they will increase to 26 ML.   Overall, great progress from last night.   James just needs to get the FIO2 numbers to decrease back to the 30-40% range, which will show that the infection has diminished.  Last night weighed in at 740g, which is his highest yet. He’s up from 655g. This could be due to the blood transfusion. We will get another weigh in tonight.  Due to James very uncomfortable in the position needed, the spinal tap wasn’t able to get enough fluid to check for protein, glucose, and cell count. But they really only wanted the culture, which they got an...

1/15/21 - Friday Morning :  Convo with Doctor - Off the gentamicin antibiotics. Tomorrow morning getting a chest and abdominal X-ray and a metabolic panel to check electrolytes and such. CBC and Blood gas will be done today to check all levels of blood and CO2 to see if James might need another blood transfusion.  Still at 3 ML of feed and is tolerating it, which is good. Will move up to 4 ML tonight to see how that works for the next 3 feeds during a 9 hours window. Which will lower the TPN rate. By 3am, we should know.  Getting Glycerin tablet to help with with bowel movement, since he hasn’t had one in the past 18 hours or so. Saliva swab came back fine. The culture is showing no growth in urine, saliva, and the second blood culture.  X-ray shows that the lungs are experiencing chronic changes, which is considered a lung disease at this point. We’d like to see a decrease in the oxygen and ventilation. If this persists, there is a possibility for using a s...

1/14/21 - Thursday Morning :   Baby James will be 2 weeks old today. He had another rough night. His FIO2 is up to 60%. He got a new doctor today, since they shift every week. The results from his urine culture came back negative. They will do a saliva sample today to test that for a bacteria infection. But his blood culture did come back positive for an infection. The antibiotics that he is on should help and they will test him again today or tomorrow to be sure it’s working. They will add 1-2 tbsp of milk slowly to see how his digestion cooperates.   The infection could have happened from a number of things, including the tube in his throat, the removal of the umbilical line, the IV, human interaction... lots of variables for the cause. Similar to grown-ups, lots of ways to get an infection. Due to his size, they are taking all the precautions needed to eliminate the bacteria ASAP and not waiting for test results, hence why they started the antibiotics prior to the c...

1/13/21 - Wednesday Morning :   lots of little things adding up to be concerning.   higher temperatures yesterday but stabilized since last night  Vomited feed this morning so needs to give his belly a break  CBC lab work showed shifts in numbers that COULD be signs of an infection - Blood and urine culture still pending - will come back in 1-2 days  Started Gentamicine and Vancomycine antibiotics (every 18 hours and 36 hours) CO2 level went from 40-50 up to 60 this morning.  Will get another check shortly. FIO2 at 47% right now.  Put in an IV into his ankle - right now he’s getting starter TPN and tonight will get full TPN for approx 2 days and then ween back on the feed starting at base line again to see how he tolerates. Still getting his caffeine and morphine through the IV.  Update on speaking with Social Security Office: Waited for someone to call us for our 9:15am scheduled phone appointment. No one called. Called several tim...