October 2023 - Wrapping up the blog!

This will be the last scheduled blog update! Being in the 3rd trimester and then having bronchitis for a month has been exhausting to say the least. Sorry this has taken forever to update!

🗣️ At the beginning of the month, James had his speech therapy evaluation with Wolfson's Rehabilitation. Afterwards we realized that this drive just wasn't going to work. They wanted to schedule 30 minute appointments twice a week. It was over an hour to get there. Mom pushed for a 1 hour appointment once a week instead, but that made it really hard to schedule. They have very little available. Mom would try to find a speech therapist closer but use them until then.

🤸🏻‍♂️ We are on several waiting lists for therapy. The goal is to have Occupational Therapy, Physical Therapy, and Speech Therapy at the same location close by. For Feeding Therapy we will need drive to downtown Jacksonville to Wolfson's because that is the only location in the area that will be familiar with transitioning from a feeding tube. James' evaluation with them isn't until Jan 2nd. ☹️

🏨 On October 12th, James had his surgery scheduled to get his trach stitched up in Tampa at St. Joe's Children's Hospital. We drove in the night before because we would have to be at the hospital early. Our previous pulmonologist just happen to be at the hospital and stopped in to see James. Mom and Dad then proceeded to ask him questioning about his thoughts on getting another sleep study since James is still on oxygen at night. Mom wants to continue to have James on a pulse ox while James requires oxygen but Dad was hoping we could just stop the oxygen and pulse ox with the doctor's approval. Different parenting styles... 🤷🏻‍♀️😬 Obviously we would have to wait and see how James does with a stitched up stoma. Mom asked the ENT doctor if she could do another bronchoscopy while in the OR under anesthesia to check on the previous granuloma. She said that wouldn't be a problem. James received a dose of Tylenol and enjoyed Dad playing drums with the hospital toys. 🥁

Then they took James back. This was the first time he cried when leaving us. They put James under anesthesia before giving him an IV in the OR. We weren't there to see it get done. Supposedly they called the ultrasound team in but still had to stick James 3x to find a vein while under anesthesia. 🤔 Seems odd, especially since he wouldn't even be moving. Poor baby had a lot of bruising. 😥 Dad got work done in the waiting room while Mom met with another trach mama friend who was gracious enough to drive all the way to the hospital to visit and give us things for James and our baby girl. Mom also brought some extra oxygen supplies for her. The doctor met us in the waiting room and gave us the good news that everything went well and it was successful! We could go back to recovery to see him. James was asleep. 😴 The nurse asked us to wake him up immediately. We guess they needed the room in recovery. 🤷🏻‍♀️ We woke him up by playing music, classic rock, specifically Black Betty by RamJam is what got him up. If you haven't seen it Google "Family Guy Black Betty". Hilarious and so coincidental! The nurse was laughing, she said she had never seen anything like it. 🎸🎶🤣 James was then moved from recovery and admitted into the hospital to Room #111 for overnight observation. 

🤕 James had a rubber band drain (hollow tube of rubber like a straw) coming out of his neck to prevent subcutaneous emphysema (air becoming trapped in tissues beneath the skin) around the stoma closure. Subcutaneous emphysema can often be seen as a smooth bulging of the skin. When a health care provider feels (palpates) the skin, it produces an unusual crackling sensation (crepitus) as the gas is pushed through the tissue. All of his stitches were dissolvable. James stayed overnight in the hospital with Dad for observation. At first James required oxygen while awake but by the next day he only needed it at night. The oxygen had increased a little bit and also sounded like he needed to clear his lungs. He was given albuterol nebulizer treatments. The rubber band drain was removed the next morning. James' stoma should be completely closed in 2 weeks and he will have a trach scar. 

🪷 In the middle of October, Mom was generously thrown a beautiful baby sprinkle by Natalie Harris! 🎉 Gorgeous decorations and delicious food with a lot of Juju's friends who were gracious enough to help celebrate James' baby sister! She is going to have some of the cutest outfits and hair bows! It was so nice to hear the wonderful compliments from everyone on how well we are doing with James. We really appreciate the support! One of the highlights was when Natalie's son Chase played two of mom's favorite (and extremely difficult) songs on their grand piano. 🎹  It was beautiful and James loved it too! 🥹 During the party, Dad took James out to a Farmer's market and Dave and Busters. 🎯 James did so well throwing balls into this one game that he scored 5,500 tickets. 🎫 The only item James was interested in though was a squishy avocado 🥑 for 100 tickets. James and Dad stopped by the baby sprinkle at the end to make an appearance.

🛫 Dad then went out of town to Texas for a Dad retreat. 🧳 Mom and James stayed in Jacksonville at Juju's and unfortunately we immediately fell ill and was pretty sick the whole week. 🤧 It sounded like something had been going around. The plan was to attend the Jacksonville Air Show at the end of the week but we never made a full recovery. Fortunately, it turns out the Jacksonville Airshow practices for days prior to the event at the beach and we saw a ton of jets fly over the house. ✈️✔️ James had a fever for a week and then the congestion and cough started. 🤒 It wasn't ideal considering we were keeping an eye on his breathing with just getting his trach stoma closed. He required more oxygen at night and sounded really junky so we continue to do Albuterol nebulizer treatments. Mom was using the nebulizer too. 

🫁 We had a very busy last day of October! Not only was it Halloween but we started the morning with a super early pulmonology appointment at Nemours in downtown Jacksonville. There was traffic in the morning so it was going to take us about an hour and 20 minutes to get there. While Mom was brushing James' teeth unfortunately he vomited up all his formula. The poor baby was covered and needed to get wiped down and his clothes changed. Mom did not have time to clean up the crime scene and that meant that our bed was also covered in formula. #GTubeLife Our new pulmonologist was super nice and he prescribed a steroid for James since Mom let him know and had been over 2 weeks of being sick. The plan moving forward is to reevaluate James for pulmonary hypertension by doing an echocardiogram of his heart. After that he would like to do a sleep study at home to find out why James still needs oxygen at night. As his new pulmonologist he wanted to basically cover all of his bases himself before just accepting previous medical records as true. The other thing the office was going to help us out with was switching DMEs for James' respiratory supplies. All About Pediatrics has been without pediatric flow meters for a year now. We need to switch to someone else. Currently we are using our own portable oxygen concentrator and running it into the ground. We also do not have a backup and these things don't last forever. 

🩻 Once we got home from the pulmonologist Mom had a ton of laundry to do from the morning incident. She also decided that it was in her best interest to go to a CVS minute clinic to get checked out. Unfortunately they cannot help pregnant women and was referred to go to an urgent care center to get an x-ray to rule out pneumonia. Mom drove to three different urgent care centers. The first two did not have x-ray machines or an x-ray tech available and the third did not take our insurance. So Mom ended up in the ER at the hospital where she would deliver. 🏥 Being at the hospital on Halloween means that Mom would miss James' first experience trick-or-treating. Overall after respiratory tests, nasal swabs, blood tests, x-rays Mom did not receive any answers. They chalked it up to being bronchitis. Mom was having broncospasms so bad that it was making her vomit. The ER doctor prescription for a steroid, just like James, and also a nebulizer treatment. Mom did not get home until midnight and spent about 5 hours in the ER. ☹️

🎃 James was Elvis for Halloween! 🎙️🎸🎶 Dad took James trick or treating around the neighborhood in the stroller. We live at the end of a huge cul-de-sac and they did a small loop before just going home to pass out candy. 🍫 In our neighborhood everyone just kind of stays at their end of the driveway to pass out candy. James didn't really understand the concept, so when he was given a treat he put it back into their bowl. 😂 

🤰🏻 Pregnancy Update: We started out the month with getting the c-section scheduled for Dec 4th at 37 weeks! It's special because our baby girl, who will be named Ella Jade, is named after her Grandma Eleanor (Dad's Mom) and her birthday was on December 2nd. We love using honor names! Most know that James was named after Mom's Dad, but few know that James' original due date was April 8th, only one day after Pop-pop's birthday. 🎈

🩸 Mom had a 1 hour glucose test at 29 weeks and unfortunately it wasn't good. They wanted to do a 3 hour test (scheduled at 31 weeks) and it was an immediate fail. So now Mom is sticking her finger 4x a day to check her glucose. We will keep an eye on this in case we need to introduce insulin. The good news is there is no signs of Preeclampsia. Mom attended a Breastfeeding Support Group at the hospital where she will deliver. Although it was a little awkward being the only one there without a baby, Mom was able to ask a lot of questions. The other moms were nursing and then weighing their babies to see how much that had ate.

📸 At 32 weeks we did a maternity photoshoot. Photos that Dad took are posted here. The official photos will be uploaded in a separate post. It was great experience and so nice to be able to celebrate a healthy pregnancy. Not everyone gets the opportunity and we wanted to take advantage of it! It meant so much more with everything we have gone through. We will also be having newborn and family photos done as well! Can't wait! 💝

✨Updating this blog on Thanksgiving, Mom is now at 35 ½ weeks and she is weighing 5lb 4oz. Everything is still great and looking good! Only 11 days to go! 🤯

👋🏻 With James officially getting his trach stoma stitched up seems like a great time to stop the blog. Mom has been doing this for 2 years and 8 months! At first we started this blog because it was an easy way for us to update friends and family while James was in such a critical stage. It was so overwhelming to update everyone individually while also being in survival mode. It was actually Dad's idea and Mom took it over. It then became therapeutic for Mom and actually super helpful to find past surgery dates or when we started or stopped medication, etc. It has also has been a great resource for new medical moms and sharing this blog with others has led to some close friendships. It will remain public so that it will come up in a simple Google search if someone was trying to find an answer or support for something.

James is super stable now and will most likely be starting preschool in the new year. Mom has been working hard to get his IEP meeting scheduled. Medically James just has his G-tube and is on oxygen at night. He has made so much progress! Even just this year, James was still on a ventilator in January. And like his new pulmonologist said, "You would never know by looking at him that he was a former micro preemie". 🥹

Moving forward updates will be sporadic; so in order to be notified the best way is to subscribe to the blog or reach out to us directly! The updates here will just be Facebook updates copied directly to the blog (to update those who don't have FB). As a reminder, if you haven't yet you can email James at JamesWestonAbramowitz@gmail.com. We love finding out who all reads the blog and are fans of James! One day he will read these too! ❤️ Thanks for following James' micro preemie journey!

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