The Journey of James Weston

Thursday, February 25, 2021 Update: Today is the day!  The first skin to skin moment with Mom and Baby James. Since James had a great night, the doctor decided to remove the JET this morning. This means James is only on the conventional ventilator right now. His FIO2 is at 26% and he is steady!  He’s responding extremely well to the steroid and is very stable. His CO2 level from the blood gas is still in the 50s, so the nurses and doctors allowed Mom to move forward with James doing skin to skin today!  James weighed in last night at 1750g, or 3.7 pounds. Putting on weight while on the steroid is fairly uncommon, but shows that James is having great progress  He is moving his bowels every couple hours. Overall, today is a great day so far. We also found out the hospital has 2,427 MLs frozen in storage (approximately 10 days worth).  Here’s some great footage from skin to skin: Front view:  Close up: Close up 2:  

Wednesday, February 24, 2021 Update : James hit a milestone today .. 21% on his FIO2! (Which is what adults breathe at). It was short lived for only several minutes, but it’s excellent progress.  He has his mood swings, especially when he has a dirty diaper.  Tomorrow could be a big milestone for James getting off the JET (if his blood gas and oxygen levels look good) 🤞  He weighed in at 1750g (3 pounds 13.7 ounces). Our baby boy is growing!  Here’s a few captured moments from today, including James having a reaction to finding out he will have Dad’s curly hair: James loving his swaddle! James found out he will have curly hair 👨‍🦱 

Thursday, February 23, 2021 Update: James is receiving the steroids well. His FIO2 levels have been from the upper 30s to the upper 40s, which is down from the mid-50s last night. Due to this, the doctor thinks we can try the conventional  ventilator, possibly on Thursday.  This would open the chance for Mom to do her first skin to skin! (Previously, Mom held Baby James without skin to skin due to the JET machine being too bulky and risky).  The results from James’s eye exam came back good. He’s showing great progress here without concern. His next exam will be in two weeks. He is still at Stage 1, Zone 2. The progress made shows he has moved in Zone 2 closer Zone 3. James did have the EKG yesterday, and the results are not concerning right now even though numbers show low due to compared to adult heart. There will be a follow up with Echo at the end of the steroid course and there will be another EKG done then to be certain. The Clonidine medicine for blood pressu...

Monday, February 21, 2021 Update:  James was able to recover nicely from yesterday’s craziness. It seems like the steroids have taken well so far. His FIO2 has been between 40-50% today. The hood of the incubator has been lifted most of the day since James has effectively been regulating his own temperature. James weighed in at 1710g last night, putting him at 3 pounds 12 ounces. His heart rate dropped a bit today, so he had an EKG done. The results returned without any concerns at the moment. But they will continue to monitor.  He has been enjoying his little pacifier and getting some touch time from Mom and hearing Dad’s voice. He enjoys being swaddled and his blue hat too. Photos and Videos today: Pumping Update: At this point, we will be switching from the small 4oz hospital bottles to freezing in bags for better storage space. Let us know what brand you recommend! When the "milk room" 🍼 at the hospital 🏥 tells us to bring more in we will supply them with fresh milk pu...

Sunday, February 21, 2021 James weighed in at 1610 grams (3lb 9oz). He is a growing boy.  After speaking with the Doctor, they have decided to start another round of steroids today. Tuesday was 4 weeks from his last round. They like to spread those out. We are hoping this one will help get his oxygen numbers going in the right direction to be able to decrease support. The goal would be to have him then move to the conventional ventilator. This would allow more skin to skin and hands-on which is important. Other than that all we can do is just pray and hope his lungs continue to develop. The stage of his lung disease (underdevelopment) is critical. We had hoped that being on the jet would have helped more at this point. It is looking like Baby James will most likely be going home on oxygen and need support whenever that time comes. He is only 33 weeks even though he is 7 weeks adjusted. Going home on just oxygen would actually be a welcomed outcome compared to what other options may...

Saturday, February 20th, 2021 Champ's 15th Birthday! 🥳🐩🐾 (Photo below) So the rollercoaster ride continues. 🎢 Kinda feels more like the Teacups at Disney...  Baby James had a hard night while Mom slept close by. He is higher on his oxygen than he has been, even after the blood transfusion which we were hoping would help with that. His blood gas from this morning at 4:30am was high (not good). The one taken at 4:30pm went down a little but is still high. The x-rays of his lungs are the same. The good news is that he is growing, gaining weight, and as of today... regulating his own body temperature!🌡️ So we checked off one of his milestone boxes, "Isolette to air control" . This also means his first swaddle which he absolutely loves! Once James reaches 1700 grams we will be able to pop the top off the incubator! First Swaddle! Things to consider why his oxygen requirements are higher: - PDA - we are waiting on another echo to see if this hole has gotten any bigger. -...

Friday, February 19, 2021 After the blood transfusion yesterday James was able to have his IV and NIRS removed today. The NIRS was in place to study the effects of blood transfusions on regional tissue oxygenation in preemies. Less lines, yay! His oxygen settings have been higher today starting at about 45-55, needing to go to 70 during his evening Hands-On, and now napping at 65. This evening's weigh-in was at 1580 grams (3lbs 7oz)!! 📈💗🏋️‍♂️ Mom was able to have one-on-one time with the top up twice today for 30 minutes each. Baby James received some good reiki energy and enjoyed his pacifier. Video below.  It is now noted in Jimmy's chart 📝that he is pretty fussy about having a dirty diaper. So now that is the first place we look when he is upset. He has also been setting a record for going through the most number of diapers (lol we're guessing). Typically at each diaper change we are using two to three diapers! It just keeps coming! 🧷 Sweet Baby James is now on the ...

Thursday, February 18, 2021 Update:   James had a roller coaster of a day, but it’s been a good day overall.  The day began with getting a new IV put in to prep him for his blood transfusion. His Hct went below 25 so he needed it today.  They had to stop his feeds for 3-4 hours during the transfusion. He received everything well, but now has the IV in his little hand. 😞  He is now back in his full feed at 31 ML. James will have his blood  checked in 1-2 days to see what his new levels are at.  James weighed in last night at 1490g or 3lb 4oz. He also had his kidney  ultrasound this morning, and those results came back good.  James had 6 bowel movements in the past 24 hours. This is great progress as he continues to grow and tolerate his feed. 🍼 Mom has been pumping like a champ with back to back to back GRAND DAYS! (1000+ ML pumps). It’s been challenging to adjust to this new lifestyle of 7-9 pumps per day.  To paint the picture:   Mom ...

Wednesday, February 17, 2021 Morning/Afternoon:  Baby James weighed in at 3 pounds 4 ounces last night!  That’s a 2 pound gain since birth!  Tomorrow, Baby James will be 7 weeks old and we will be celebrating with his favorite ... a fortified milk and morphine cocktail, with extra Vitamin D. 😉 🍼  The doctor thinks James will be due for his blood transfusion tomorrow, which should help with getting more oxygen to James. More red blood cells = More oxygen.  Check out these great moments captured with Mom, Dad, and James during our round 2 of cuddle time!