The Journey of James Weston

Saturday, November 19th, 2022 Today Dad watched James for a few hours. He loved typing on the keyboard and scooting around his nursery. Then he napped while Dad watched a documentary. 🎥 It was a lazy Saturday.  Tomorrow Dad's family visits from New Jersey! P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com

Friday, November 18th, 2022 After a long day of playing, we decided to do Family Dinner Night tonight instead because it worked better with Dad's work schedule. We ended up at Bonefish, because it was just one of those weeks and we deserved it. James was dressed for the occasion in his sweet sweater embroidered by Aunt Robin. James was off the vent for his 3 hour trial, so we just carried him in and sat him in a highchair. It is the most amazing feeling to leave the ventilator in the car and just carry your baby. We don't know anything different with James being our first. Sometimes difficult experiences make it much easier to find gratitude! James was such a big boy playing with his crayons! Thank goodness the table cloth is just more paper. James was great at first and then he didn't want to sit in the highchair anymore. Mainly because it was just getting too late and he was tired. Once we got home James joined Mom and Dad for some Gin Rummy. P.S. You can email James your...

Thursday, November 17th, 2022 World Prematurity Day! ❤️❤️❤️ James Day 687 (Today!) 20lbs 29inches James Day 1 1lb 11inches Video of his first night in the NICU. Mom was on the other side of the hospital on a magnesium drip recovering from surgery and was not allowed to visit. ***** Today, James had physical therapy in the morning. We focused on standing and walking. We raised up his crib rails to the very top and the therapist actually stood on a small ladder to hold James up while Mom maneuvered his feet to walk. He likes to stand but only in certain places or areas where he feels comfortable or safe to fall. Once out of the crib we had James standing at the nugget cushions. However as soon as James realized he was out of the crib and off the ventilator his immediate reaction is to lie on the ground and start scooting to freedom. Since he is now strong when he throws a toddler tantrum it is impossible to control him. The most important thing is protecting his head from slamming on the...

I'm going to start off this post by saying this may be TMI for some. So whether you want to call this a trigger warning or sensitive post, there ya go... The last two weeks have been a rollercoaster of emotions from being on cloud nine and feeling so blessed to being heartbroken and angry. I think Mike put it best when he said, "When are we going to get a break?!". There have been a lot of tears over the last few days. We had positive pregnancy tests and confirmed blood test results from the clinic. The embryo had implanted in my uterus and was growing! We were so excited to share the news! 😁 They typically have you come in every few days for blood work. After my second blood test I received a voicemail from the nurse just telling me to call her back. 😢 I already knew my HCG had dropped because she wouldn't leave a voicemail. The doctor said he didn't want to throw in the towel, so he had me continue injections and retest a few days later. Not only do these inje...

Wednesday, November 16th, 2022 James had fun in the morning with Dad pulling himself up to reach the tablet. It is his strongest motivator. What's funny is that he isn't even reaching for the tablet. He really wants the thing holding the tablet. James is really interested in the mechanics of how things out. In the afternoon, James had EI Therapy and Uncle Patrick stopped by to say Hello. 👋 During therapy James showed off by stacking the cups and making towers.  For Mom, today's blood test confirmed a second drop in HCG and she was told to stop injections. She would be miscarrying over the next few weeks. 😭 The next as step would be to do another blood test in a week to see where the HCG is and for Mom to have a virtual consultation with the doctor. At this point, after 5 years at the same clinic and not being really thrilled with our doctors bedside manners she asked to switch to someone else. 🤞🏻 P.S. You can email James your love and support as often as you’d like. Mom...

Tuesday, November 15th, 2022 We had our appointment with ENT in the late morning. We really like our ENT Doctor. She is very honest with us, answers our questions, and is always willing to help us get the help we need. Our last appointment was a few months before James was taking any trials off the vent, so now we could tell her the great news that James was now up to 3 hours 2x/day. This Doctor specifically manages his trach not respiratory. Basically they are the ones that do the tracheostomy surgery and also decide the decannulation process. Since James no longer has tracheomalacia and has really never had any other issues with his trachea we have just been discussing next steps once James is off the vent completely. During the appointment we let her know are concerns with the pulmonology nurse practitioner not really being on the same page with the pulmonology doctor. We also discussed the fact that the NP said that they don't recommend long stints of using the PMV, they don...

Monday, November 14th, 2022 Mom took James upstairs to his bedroom while he was doing his morning trial off the vent. Today we increased the trial to 3 hours. Mom had reached out to the FB group of Moms with Trach Babies and asked everyone for their sprinting schedules, specifically for those with babies with severe BPD, no other complications, with similar ventilator settings. Some moms that just take their babies off the ventilator and see how they do. 😳 Others are weaning very slow sometimes only increasing by 10 minutes a week. 🥱 Since we have not been able to speak to our doctor and are only getting spotty information via our nurse practitioner. Mom decided to take the schedule into their own hands. We will be increasing by 1 hour 2x daily each week. That means by the second week of December James will be 12 hours off the vent during the day. It is very common for the next step in after that is to be off the vent during naps, but we've already been doing that. Mom has been m...