The Journey of James Weston

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...

Morning update:   Oxygen 41% today. Up to 12 ML every 3 hours for feeding. Weighs 1lb 9oz. Adding multivitamin of Iron today. Checking daily blood gas. No other changes for today. Steady progress.  Afternoon :  James had a low grade fever at 100.2. White cell count showed slightly abnormal. Immature fighting cells/white cells. Infection or stress response is possible.  Blood and urine culture happening now.  It’s the first time his encasing is open.  Results take 24 hours to come back. If needed, antibiotics will be provided. Cause is uncertain at the moment, but this is preventative for now. Common procedure for his size. Having to hold him down during the IV and watching him squirm was so hard for me (dad) to experience.  His little eyes crying for help while they put the IV in his arm to draw blood. I did not like this front row experience.  But James handled it so well! He is a tough little guy and I cannot wait until he get...

1/11/21 - Monday Morning: FIO2  is at 38% - which is great. Vitals are good. James has both eyes creeping open now. 👀🥺 Gases and Chems moved to daily. At 10 ML and will be at 11 ML at 2:30p and then 12 ML later tonight, which is full feed.  No X-rays done today.  Removed umbilical catheter, so all belly feeds now.  Results from ultrasound will be back later today.  Apgar score - points for color, tone, respiratory efforts 5 and 7 at birth.  Ultrasound came back great. All results were positive.  There was a concern with a space in the lung, but James was able to self correct. The doctor is pleased with the progress.  Evening:   James weighed in at 695g!  Our baby is growing up right before our eyes. Speaking of eyes ... he’s really opening them up now. Vitals are good. Feeding is good. He’s pacing steadily. 

1/10/21 - Sunday FIO2 was between 35-45% overnight. Red blood count is good. Up from 35% to 45% after the blood transfusion. Should hold for the next week or so. He might need a transfusion for the next few weeks each week to help with growth.  Feedings are going well. Bowel movements look good.  Should have the umbilical line taken out tonight and won’t need TPN or PICC line as of this moment and will be only on milk.  8 ML right now at 26 calories per 30 ML of feeding.  Graduation day!  No more umbilical line!!  Today’s blood gas level was 44 CO2 content, compared to 71 the other day. So, he’s made great improvements. A great range would be 50-60. Small adjustments to the oscillator today will help get James to where he will need to be today. Tomorrow will get another ultrasound of his heart to look for PDA to see if there’s any blood flow restrictions or if it’s flowing too fast that can create wet lungs. Might need a small amount of Tylenol to h...

1/9/21 - Saturday Morning:  Baby James had stable night and all counts look good. His FIO2 level went back down to 41%. X-rays look better. Keeping same settings for oscillator. Follow up chest X-ray tomorrow. Tolerating milk just fine. His Red blood count is lower today and needs a blood transfusion. This can be related to his size and to help avoid becoming anemic. Afterwards, he will get some meds and put back on his feed and milk. Then he will have his umbilical catheter removed tomorrow.  Due to lots of blood tests, his hematocrit leel was 35 and is dropping, along with the oxygen levels, so the transfusion is highly recommended to avoid any organ malfunctions. The transfusion will also help with transferring his oxygen. It’s a common practice for a 26 week old. His blood type is A+. They will hold off on the milk feeding to avoid the efforts of digestion.  Lindsay’s liver numbers went down a little bit but are still high (see previous post), so due to the...

First - We are overwhelmed with gratitude with how many of our friends and family sent their love and support. It’s been remarkable and we are truly blessed with having so many great people surrounding us. ❤️  Second - Lindsay and I started a daily log with what’s happening with Baby James. We love having people text us asking how things are, truly, and we are also getting slightly overwhelmed having to explain the situation repeatedly. This daily log/blog, will be the best place to visit first. Lindsay very much appreciates all of the ladies who have reached out to her with pumping tips and suggestions as well as those who have shared their personal and positive NICU stories. It’s so important to be able to relate right now. Sometimes talking to a stranger who has gone through the same situation means more than anything to her. Please keep that up! 👏  The most meaningful texts to us will be something like - “I saw on the blog that James winked, so cute!” - this shows us that...

1/8/21 - Friday   9a - Belly looks good today. Gas patterns in intestines look normal shows he can tolerate more milk. He’s at 5 ML and will increase 1 ML every 12 hours. Will increase from 24 calories to 26 calories per ounce (30 ML) of milk since his progress is so good.  Next brain ultrasound will be in 5 weeks to ensure things are still healthy. Still a risk for PVL for us to monitor (holes in brain tissues to reduce blood flow. Not likely, but possible). Two months post due date is when baby can see images and features, for now, the eye is just opening since the tissue is breaking down. Eye exams will happen around 31 weeks with ophthalmologist to ensure the retina development.  There’s a chance that he won’t need the PICC line since his feedings are going well. The alternative would be adding a little sedation for oral feeding and not through the umbilical catheter or PICC - this will be a big win for this week. Things to look that would call for extra atte...

1/7/21 - Thursday Morning: Just got an update from the doctor that everything is looking good. His brain scan looked good - they are going to do that again in 1 month around 30-32 weeks. They removed him from the dopamine for his blood pressure. The only concern now is his abdominal girth is a little larger so they are going to hold on increasing his feed. Xray looked okay though. They were going to increase 1 ml every 12 hours, but now that will be on hold until tomorrow.  Has exams and X-rays tomorrow. His blood gas is stable for breathing.   Mom is supposed to stay on bed rest, but due to going to NICU, we will accommodate best we can. She must stay on blood thinners and blood pressure medicine for a few weeks due to still having higher than desirable blood pressure. Preeclampsia doesn't immediately go away after delivery and in some cases gets even worse. We must monitor the totals twice daily and meet with her doctor weekly on Thursday’s.  James got to ...

1/6/21 - Wednesday Mom got 8 pumps done yesterday and had her best yet this morning with 51 ML in one sit. Woo hoo!  She’s rocking the pump.  Baby James had his first “bath” this morning. They use little cotton balls and wiped him down. He had a busy night getting all of his lines updated and adjusted, so he deserved a little TLC.  He’s now nestled up on his left side and resting. The nursing staff has been outstanding so we are buying them all egg sandwiches from The West Tampa Sandwich Shop (#ShopLocal #SHOLO) - best in town!   Baby James also peaked out through his right eye today! Our baby boy is already flirting with the ladies, says Nurse Julie.  10a - James is peeing well. He’s stopping dopamine since blood pressure mean is approx 40 vs his age of 26/27 weeks, which is excellent. Bowel movement twice in a day, so increasing food. Getting info today on PICC line instead of the bellybutton IV to get more TPN nutrition for the next several mon...

1/5/21 - Tuesday Our first morning not pumping in a hospital room was a success. Using our own pump was simple (after a few YouTube videos) and Lindsay produced 110 ML since her discharge in 5 rounds of pumping (avg of 22 ML per pump). James is taking in 24 ML per day right now, so mom is doing excellent!!  James’ blood pressure is a mean of 33 (which is great for being 26 weeks) and his FIO2 is down to 30% with the settings lowered. He’s that much closer to breathing on his own. They’re giving him small doses of morphine and caffeine - For comfort and for preventing apnea and can help improve oxygenation.   Lindsay changed his diaper for the first time and did amazing!!  Little James kept peeing during the change.  That’s my boy!  The diaper is so tiny (adorable) and we kept one for his baby book. At some point, there will be a photo shoot with Big Jim and his Tiny Diapy 😂 10a update with Doctor: Kidney and lungs look good. Coming down on dopamin...

1/4/21 - Monday  4am check in A great night for James. He gained weight. Now up to 626g from 530g - water weight so it will decrease.  CO2 levels are good FIO2 is good 52%  25 ML diaper shows good urine output  And they removed his hat - why?  Jimmy has not moved his bowel yet. But he’s been urinating well. Last night he had 25 ML in is diaper.  Right now, his oscillator for FIO2 is set to 47%, which is down from 80%. Lots of progress here.  He’s gained 100 grams in weight since birth. Which is also progress. Weighing in at 626g now.  10a with Dr P:  blood pressure is good - ready to go down on dopamine Up on food to 3 ML every 3 hours (24 ML daily) Urine output improved Urine protein study is inconclusive at the moment Ultrasounds looked good around head Ultrasound of heart showed PPHN - normal for his age - PDA and PFO - nothing to be concerned with  Updated Results from BMP: kidney function is improving with u...

  1/3/21 - Sunday Morning - Dopamine drip on lower dose to stimulate kidney to help release urine.  FIO2 - oxygen concentration giving James was down to 35 and is now back up to 80.  Still some trouble ridding of the waste of carbon dioxide.  Blood pressure looks great: 42 today vs 25 yesterday  PDA - heart vessel might need to get closed - will check today  Results from BMP: Electrolytes are okay.   Markers for kidney function is worsening.  Increased to 2 ML every 3 hours. No bowel movement yet.  Weekly measurements on Monday:    we are looking for 0.5-1 cm growth weekly in head circumference and length Focus now: lungs and kidneys functioning properly.  AFP (alphafetoprotein) level from amniotic fluid was over 10, but the level would be much higher for Finnish nephrotic syndrome (FNS) diagnosis from MFM, so might not be it.  Kidney ultrasound was normal Brain ultrasound had no bleeding. Will check next week again....