The Journey of James Weston

Thursday, November 3rd, 2022 Mom called the IR at 8am when they opened and they confirmed that they had the right sized button. Our procedure was scheduled for 1pm at Wolfson's Children's Hospital. It was a super easy process way more efficient than anything we experienced in Tampa. While we were waiting in the waiting room to be called back James double check the paperwork and wanted to remove his medical ID band. 😂 When we went back Dad got gowned up to go into the surgery room because Mom just had her embryo transfer only 2 day before. So when they ask "are you pregnant?", you say yes. The surgeon let us know afterwards that she would only recommend a 1.2cm button and he was nowhere close to 1.5cm which is what they put on previously. She also told us that we could come back every 3 months to get the GJ button replaced because they typically don't last longer than that. We would need to get an order from our doctor though since some parents just stop seeing th...

Wednesday, November 2nd, 2022 Dad started off the morning calling the GI office of the doctor who was on-call last night. This was the doctor who spoke to the ER doctor, the doctor who told us to call his office in the morning so we could schedule with GI. Well it turns out they decided they couldn't help us and just told us to contact our GI doctor, even though it was the same group. So Dad called our GI office but it doctor wasn't in and there was no nurse practitioner or any other doctor that would help us. Dad contacted the other office again letting them know for situation and they couldn't have been more condescending or rude. So after all of this Mom did the same thing calling both offices, asking for an explanation of why the on-call doctor said he would help us and now they cannot. She also was greeted with horrible customer service getting called "Hun" by the office manager. After all of the back and forth finally we were told that our GI office had the ...

Tuesday, November 1st, 2022 Today was the craziest day ever! In the morning Mom had her embryo transfer and by the evening we were in the ER with James.  Dad and James waited in the car while Mom had her procedure. They wouldn't allow patients to take and Uber home because of the sedation. Everything went as expected and we got our first photo of the embryo. [Below] After the transfer we went out for a late breakfast and took James inside the Village Inn without his ventilator on during his 1 hour break. James did so good! It's such a huge deal! Around 7pm Mom was doing some of James' nightly care when she noticed his GJ button was sticking too far out. The balloon was deflated and had popped out through the stoma. Mom screamed for Dad and alerted him we needed to go to he hospital. Mom ended up pushing the button back in James and taped it down with gauze and medical tape. We called the GI Doctor's office to see if we should wait to come in tomorrow. Mom spoke to the o...

Mom's Facebook Update  I never felt comfortable announcing my pregnancy with James. I wish I had, because it was really tough emotionally. I was just waiting until it felt safe, though after a 2nd trimester loss that wasn't going to happen. BUT as soon as we announced, "We had a baby and he needed a miracle!" we had an outpouring of support and love since Day One that has been priceless. So after debating whether or not to share this, we figured we could use the extra support and prayers from our friends and family.  On November 1st, I got knocked up 🤞 by our fertility doctor. It's called a Frozen Embryo Transfer. We don't know the gender, it was an embryo created earlier this year in May. Although there are no guarantees, we are hopeful this next step in our journey will allow us to bring home another rainbow baby. We are so excited for James to grow up with a sibling, just as we did. James is making rapid progress but even if he wasn't, it's our fam...

James is now up to 1 hour twice a day off the ventilator! Let me tell you it is one of the best feelings in the world once these ventilator dependent kiddos get to trial off the the vent (called "sprinting"). Since James was born we've been very adamant about making sure he wasn't disconnected for very long and tried to avoid it if it wasn't necessary. We already had to disconnect him for trach changes, putting his circuit under the crib railing, placing him inside his pack and play, taking his T-shirt off, and cleaning his ballard. We are talking about disconnecting James for a matter of seconds because any longer than that the ventilator beeps and then whistles like a train that sounds a shiver down your spine letting you know that you need to connect him immediately. The sound is also specific to the LTV ventilator. Over this past year, there were times in the middle of the night when pitch black that James's circuit would become disconnected. I would screa...

Monday, October 31st, 2022 James had an eye appointment in the morning. He's lost appointment with the pediatric ophthalmologist was in January. We were scheduled to see her in May but had to reschedule and then with COVID and several trach infections we ended up just canceling to reschedule it a later date. To be honest we haven't been eye patching ss much as we should. Having James where the helmet this summer was really hard to also do eye patching. 👀 When we arrived the lobby was packed. We waited 30 minutes for us to be called back. Then we were seen by her assistant. She says, "Oh that's such a cool sound machine, what is that white noise?". We replied, "No that is his ventilator". 🙄 Does anyone look at a chart before they talk to a patient? The assistant went over all of the regular things like height, weight, and changes to medication. Then she dilated James' eyes and how does go back out to the lobby to wait for another 30 minutes. But at ...

Sunday, October 30th, 2022 🍏🍎 Today was the first time we gave James an apple slice to try. He he actually ended up taking small little bites and mom is right there to monitor. But when he got that new texture in his mouth a little tiny pieces of apple he started gagging and wanted them out of his mouth immediately. We heard that it takes a while for babies to transition from just purees. 🤷🏻‍♀️ Next will be trying this little baby puffs. 🏀 In the evening, we added a basketball net to James crib temporarily. He quickly learned how to dunk and make baskets. It may be his favorite toy! 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