The Journey of James Weston

Friday, March 19th, 2021 With the recent events and information that we have received in addition to there not being many updates today, we thought it would be a great day to be grateful for all of the things James has going for him! ❤️ Yes James has had several blood transfusions🩸for anemia, had to be on antibiotics for an infection 💊, and has had respiratory distress 🩺 which has led to broncopulmonary dysplasia 🫁. But he lucked out on a few things that are common to micropreemies..... 👁️👁️ His eyes! James is doing well on his eye exams. He has been opening his eyes more and more everyday! Some micropreemies get Retinopathy of Prematurity which is abnormal growth of the blood vessels in an infant's eye that can cause blindness. He is currently at Stage 1, Zone 2 and should have another exam on 3/23. 🧠 His brain! James has never had a brain bleed, which most nurses has let us know is amazing! An intraventricular hemorrhage (IVH) is bleeding into the fluid-filled areas (ventr...

Thursday, March 18, 2021 James weighed in at 2645grams (5lb 13oz) last night!  Growing boy! Today Daddy held James for just about 3 hours while singing songs 🎶 of Elvis, Goo Goo Dolls, Smash Mouth, Marc Cohn, Eminem, and Biggie Smalls. Baby James was feeling it. Check out the video below! Dad will be out of town this next week for some business meetings in Miami. It's time for Dad to go back to work. 👨‍💼 Mom will be holding down the NICU. This evening James is experiencing his first Tampa Thunder & Lightning storm! 🌩⛈ Ventilator #s Update: FiO2: 48 PEEP: 14 Rate: 40 (James is ranging anywhere from 40‐72; this is the backup rate. That means at 40 he isn't doing anything on his own.) Tidal Volume: 17 All of these numbers are relatively high, especially the PEEP which is the pressure. Future Bone Scans Another thing we haven't mentioned yet on our blog is that we have been concerned about his limb length and recently mentioned this to our Doctors. Obviously with having...

Wednesday, March 17, 2021 Update :  James got to play dress up today for Saint Patrick’s Day ☘ after his bath. He gets to have tub baths on Saturday evenings and Wednesday mornings. Cute Irish outfit made by NICU volunteers! James is at least a ¼ Irish 🇮🇪! He is also German 🇩🇪, Russian 🇷🇺, Polish 🇵🇱, and Jewish 🇮🇱, with a small percentage of a few others!  James overall had a good day. His FIO2 has been between 50-54% most of the day.  No changes to his ventilator settings. Mom and Dad had another lengthy conversation with the doctor today about the tracheostomy. Unfortunately it looks like even with another round of steroids James would not be able to be extubated which is the goal of a 3rd round of steroids. There are pros and cons to every single thing. For example, the 2nd round of steroids (2/21‐3/3) helped James lower his FiO2; however, each additional round of steroids could possibly cause neurological issues. So unless the next round of steroids ...

Tuesday, March 16, 2021 Review :  We are going to take today to review James and the medical lingo that’s been being used, along with an update on James.  However, PLEASE know how the search feature on the blog works. If there’s ever a word or lingo you’re not familiar with, it was probably explained in a previous post. Simply go to the search bar and type that word in. All of the previous posts will appear and you can then get our explanation on that topic. (Google is also a great tool 😊)  - FIO2 = Oxygen % that James is requiring to breathe. The higher this number is, the more concerning it is. Why? Because that means James is not breathing enough on his own. The concentration of oxygen at room air is 21% (what we breathe). James is requiring 61%. The closer he gets to 21% the better ! Additionally, f or babies who are born  very  prematurely,  too much oxygen  in the blood may also lead to problems in the brain and eyes. This is a balance....

Monday, March 15, 2021 Update :   Our baby boy is growing so rapidly (which is great) the doctors want to cut back on his calories a bit.   Baby James has developed a baby double chin.  😯 They decided to lower the fortifier additive to Mom’s milk from 24 to 22 calories. He’s still staying at 46 ML every 3 hours.  Baby James weighed in last night at 2570g or 5 pounds 11 ounces.  Due to the BPD spasms, a few adjustments will be made to the settings on his ventilator.  The Tidal volume will be raised to 16 from 12. This is the amount of air that keeps lungs open. His PEEP is staying at 14. The Rate of 40 is staying the same too.  His FIO2 was up to 80 most of the day, but during a nice afternoon with Mom and Dad, he’s down to 63. James was able to lay freely unswaddled for a few hours while Mom & Dad kept watch and even took a nice long nap. Mom gave James a mini spa day with a facial, manicure, and some oral care, while Dad stood by having man to...

Sunday, March 14, 2021 Morning: James was looking forward to “pi” day. We’ve been discussing some of his potential favorites: breast milk pie, Simlac pie, and a potential favorite morphine pie.  Unfortunately, James is having a tough start to his day today.  Last night was a scare for us, and unfortunately, that continued into today.  Due to the bronchospasm last night, he’s been having a challenging time putting his lungs to work. A peak scare was when Mom saw the ventilator alert “The patient is no longer attempting to breathe.” 😳 Luckily, James is on the NAVA settings that has a safety feature to assist his breathing for him. His CO2 jumped from 66 to 88, so he had to get an emergency X-ray, which showed that both of his lungs have collapsed. This of course sounds scary, which it is, and James is equipped to build them back up - from the steroids, inhaler, vent settings, and his own trying.  His ET tube that’s going into his lungs was adjusted to 9.5cm from previ...

Saturday, March 13, 2021 Update:   James had a large weight gain last night. He’s now 2460g or 5 pounds 7 ounces.  His FIO2 has been around 52 most of today, which is better than the 60 yesterday and 57 most of the night.  His CO2 did go up from 66 to 70, which isn’t a large enough jump to be concerned with at the moment.  As of now, things are fairly steady.  Mom pumps, holds James, cleans bottles, stores the milk, and  spends her days and nights at the NICU supporting the nursing staff and respiratory team, while Dad tries not to get in the way, reads an occasional book to James, cleans some bottles every so often, and begins to transition back to business. It’s been approximately 100 days of hospital stays (since Mom’s original hospital visits in December) and the busy summer season is approaching.  Mom and Dad are making a great team making this all work and are taking it day by day.  Too much planning isn’t effective. Focusing on what’s out o...

Friday, March 12, 2021 Update :  James is having a steady response to the anti-inflammatory and steroid inhaler, along with the NAVA settings. He’s been at a steady 59 on his FIO2 and his CO2 level dropped from 78 to 66, which is great progress.  This shows James is responding wel to the adjustments so far. Mom got to hold James for another few hours today and Dad got to read a Tuttle Twins story to him.  James is getting 46 ML of feed and weighed in last night at 2370g or 5 pounds 3 ounces.  P.S. You can email James your love and support as often as you’d like:   JamesWestonAbramowitz@gmail.com

Thursday, March 11, 2021 Morning :   Since James has been staying 60 on his FIO2 and his CO2 came back at 78, the best thing for James is a few small adjustments. He will be starting Albuterol and Pulmicort today. Albuterol can treat or prevent bronchospasms.  Pulmicort works directly in the lungs to make breathing easier by reducing the irritation and swelling of the airways. Both will be taken twice per day until no longer needed.  Along with the steroid inhaler and the anti-inflammatory, the doctor made a change to the mode of ventilation to a NAVA setting. This is the best synchronized setting to help James be more comfortable.  The PEEP will remain the same at 11, the rest will adjust.  Neurally adjusted ventilator assist (NAVA) ventilation utilizes James’ neural respiratory drive to synchronize ventilatory support on a breath-by-breath basis based on his ongoing needs. (Fancy Google Search). Essentially, this means that when James exhales and ...