The Journey of James Weston

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!

Tuesday, February 16, 2021 Update :  James is having another great day. His FIO2 has been in the high 30s. He’s sustaining his weight. He’s tolerating his feed. He’s resting and growing. Overall, there hasn’t been too many new changes, which is great news at this stage.  We were able to capture a few good photos and a video with the top up earlier today. James loved having Mom apply some pressure to him while he rested.   Each time Dad went to take his photo, James would block his face as if he didn’t want to be filmed right now. #Adorable 

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...