The Journey of James Weston

Sweet Baby James is 2 months old (34 weeks gestational)! 👶 Loves being swaddled, laying on his back and right side specifically (used to love his tummy, but things change quickly 😉). Enjoys his morphine cocktails, but hates blood pressure readings, temperatures taken under his arm, and tubes (all tubes and lines). 🌡️ James is super expressive with his hands throwing gang signs at the nurses and he can shoot you a look with just his eyebrows. 🤟 He is a human clock and knows when he is due for his meds and diaper change! 🧷 James loves when Daddy reads Dr. Seuss and his skin to skin time with Mommy. 💗 He immediately calms down after his diaper is changed and will alert everyone when it's dirty by dropping his oxygen rate. 😯 James isn't a fan of heel sticks but loves his custom made pacifier for his ET tube! Although he is tiny, he is very strong and is known for his feistiness in the NICU. 💪 The nurses are always saying he is the cutest! "This week in the womb" h...

Sunday, February 28, 2021 James woke up today and told the world “I’d really like my dad to hold me today.” And the universe responded with “Sounds good Baby James ... we can make that happen!”  And so ...  James and Dad bonded for 75 minutes doing skin to skin. Dad found that humming was a great way to bond and calm Baby James during the hold. Such a nice experience!  This was Dad’s first time holding a baby ... ever!  And today James is officially 2 months old too. 👶  Dad also made it on the “Wall of Fame” of first skin to skin holds. The nurse took a Polaroid to hang next to Mom’s photo.  Update:  James has been at 40% on FIO2 for most of the day. He’s about to weigh in at 4 pounds today (assuming he doesn’t lose any weight since last night). He’s had his ups and downs, but mostly has been stable. His blood gas showed his CO2 in the 50s, which is good. He’s up to 35 ML of feed and is tolerating it. 

Saturday, February 27, 2021 Last night was another rollercoaster. Two bradys followed by an episode of him struggling really hard to breathe. His chest going forcefully in and out. James was wide eyed (more alert than normal) looking around for help. Have you ever had someone stare at you while they're struggling to breathe? Well, having your newborn give you the same look will bring you to tears! 😢 Our nurse stated, "He is being weaned. If we don't let him try on his own he will never get get this tube out". 🥺 Needless to say there have been new expectations set. This is all new to us. Today's Update: James had an increase in is PEEP to 11 due to his episode last night. He was down to 10 and is still making progress, but the doctors want to ensure that the pressure going to his lungs is at the correct settings. It’s a dance. His FIO2 has been around 40%. His blood gas went from 52 to 62 on the CO2. This is slightly concerning, but no changes will be made unti...

  Friday, February 26, 2021 James is doing good! He is responding well to the conventional ventilator and weaned settings on his oxygen. We have been able to lower the pressure and volume into the lungs down to 11 and now 10! Today he has been between 32-37 on his FiO2. We just need Baby James to hang in there and hold steady!  Jimmy has gained more weight! Last night weighing in at 1790 grams (3lb 15.14oz) and tonight another 10 grams at 1800 (3lb 15.49oz)! He is up to 34 mls for his feedings and tolerating them well.  A couple of highlights from this week: Tuesday night(?) his feeds transitioned from the Prolactin fortifier to  Similac ®   Human Milk Fortifier Powder. This is typically done once they reach 34 weeks gestation. Yesterday James took out his own OG tube (thin orange) for his feeds!! Yes he tongued it out and then used his hand while in the mitten to help pull it out further. Crazy baby! The hardest part was watching the nurse put the line back in....

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...