The Journey of James Weston

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...

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...