The Journey of James Weston

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...

Sunday, November 13th, 2022 Today mom got a break for a few hours out of the house while Dad watched James. Nothing too exciting today other than James got to try real sweet potatoes for the first time. Mom cooked James his own side of sweet potatoes in the oven, but he really wanted nothing to do with them. The texture was still too different. So Mom ended up getting the Gerber sweet potatoes out and James immediately was interested in those! 🍠 We are also going to get him better utensils for him to feed himself. Every time he grabs the spoon he accidentally wipes all the food off and then sticks it in his mouth.  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

Saturday, November 12th, 2022 We went to the zoo again because the weather was a little cooler. We planned it so his 2½ hour sprint was in the middle of the day, and we only went for the last 2½ hours before they closed. This was the first time James got to be off the vent and see the animals up close instead of being restrained to his carseat on a stroller! We still had the ventilator with us along with all of his equipment. Although we do now leave the oxygen tank in the car. Mom and Dad took turns carrying him. We also took off his pulse ox because it would constantly alarm if James would move. So his only connections of being tethered were to his feeding pump and his Farrel bag. In conjunction with the flying squirrel (feeding pump holder from Etsy) these items can be easily hung from pants or from a pocket. James also got to experience his first photo booth! Yes, we paid extra for the video below. 😂 After this zoo we went to the Olive Garden and hooked the travel highchair to the...