Mic-Key Button & RSV

  On November 8th, about ten weeks after her G-tube revision surgery, which took place at the end of August, Emma was finally able to get a Mic-Key button put in! I am glad that Michael really wanted the Mic-Key button compared to a regular one like she had before August because the Mic-Key is working out really well for us. We were happy that we did not have to have another office appointment to measure the thickness of her stomach wall and that they were able to do that when we got to our ER appointment at Arnold Palmer Hospital. Since it was a scheduled appointment, we did not have to wait in the lobby and they took her straight back to get her weighed.

   Dr. Morgan's assistant, Emily, was there to talk to us and then a different doctor (who looked a little bit like Leonardo DiCaprio) was the one who did everything with putting the Mic-Key button in since Dr Morgan was still busy in surgery. I didn't care who did it as long as it got done and we got to go home! I was happy that we were there for only an hour. "Dr. DiCaprio" (I don't remember his name) pulled out Emma's yellow G-tube tail -- you can see it coming out the side of her shirt in the first photo. It's basically the tube used to hold the stoma open and be used for feedings between the surgery and getting the "real" G-tube/ Mic-Key button put in. He pulled that out which understandably made her cry, as he was pulling a stopper out of a hole that was smaller than the size of the stopper.
   Then he had to put in the tube that let him know how thick her stomach wall is -- and she's got to have some strong abs with all the leg kicks and exercises she does every day! That made her cry too, but she was fine shortly after the Mic-Key button was put in and the balloon inside was filled with water so it would not come out of the stoma. He suggested that we deflate and re-inflate the balloon every week or so to make sure it has the necessary amount of water (5ml) so the button does not come out. We have not had any issues with that. Yay!

 Here are some close up pictures of the G-tube attachment piece, which we really like. Dr Morgan told us that a Mic-Key button is a good idea for people who like having lots of doctor appointments, but maybe that's because if it pops out, other parents don't know how to get it back in, but Michael and I have dealt with that plenty of times between May and August when she got the new stoma. We like this one because it can come undone, leaving only the button for photos without "a tail". And also because with it coming out, we can clean the tubing every day with hot water when we change out her formula bag. When the yellow "tail" tubing was attached before there was no way to clean it since it was stuck inside her stomach. So yes, the Mic-Key button is working well for us and there have been no issues so far! Hers is a size 1.5cm, 14 French.

   For the RSV info part of the post: RSV (Respiratory Syncytial Virus) is a shot that Emma, and other babies/kids with trachs, ventilators, and lung problems, have to get during the winter months (between October and February). This has to be done with the Pulmonologist -- it cannot be done at the Pediatrician, so that was another doctor we have to see every month. However, the past two months we also saw the Occupational Therapist on the same day since their offices are very close to each other.
   The appointment takes about an hour because they always have to weigh her to make sure she gets the correct dose of Synagis. The dosage is 15ml per kilogram and on our appointment last week she weighed 6.76 kilos (14 pounds, 14 oz) which equaled 100ml of the medicine. The syringe holds 100ml, so the nurse said once Emma reaches 15 pounds -- probably by the end of next month -- they will need two nurses to give her a shot in each leg at the same time for the appropriate dose. Before getting the shot they take her temperature and then check it again 20 minutes after she gets the shot. It is common for kids to spike a fever from it, but Emma has not had a problem with it. Her temperature is almost always between 97.2 and 97.9.

Look at those beautiful curls!!

   At our appointment last week we had to schedule it with a different doctor since Dr. Garcia was not available, but he (Dr Sabogal) was still someone we knew from the NICU. I really liked seeing him because after he listened to her lungs and looked at her ventilator settings, he turned her Pressure Control down from 24 to 22!! Yay, lower vent settings! That is the amount of air it gives her with each breath/puff, and he was able to see that she was not needing it to be at 24. I was not planning on her settings getting lowered until January at the earliest, so I am very excited about that. She has not seemed to be doing any differently, so having a Pressure Control of 22 is not affecting her in a bad way. Maybe he will be able to turn it down again by two more next month too?! Except the next appointment is with a Nurse Practitioner since a lot of the doctors are off after Christmas and I don't know if she will be allowed to turn it down. We'll see! :)

Sitting and Learning

    I don't have much to say about these photos -- they are just to show how well Emma is doing sitting up by being propped with her hands on my knees or Michael will let her hold on to his fingers while she is sitting up. A couple times I have her lean against the green desk (in the second photo) but it slides easily without weight to hold it down. These photos are a mix from October and November:

 Reading one of her baby Hello books (from Highlights monthly magazine) that Grammy got her a subscription for after she came home from the NICU. The photo below is the most recent from Monday. She was only holding on with her hands -- her back was not leaning against me.

 Just a cute one of her sleeping. :)
   In these next photos from Tuesday, she had started sitting up with her hands on my knees, but because she had bloomers on and the blanket was soft, the two made the floor slippery and she very slowly slid down into an almost flat position. When her chin was on my knees, I lowered her to the ground for Tummy Time. She does not normally like Tummy Time, although I did it the other day after this and she cried again, but tried to lift her head up and raised the right side of her body by pushing herself off the floor with her arm, which is the whole point of the exercise. However, when she slipped she didn't seem to mind being on her stomach, so we'll have to use those bloomers and blanket more!

 Sitting up for one second before falling back into Grace's arms during Monday Therapy! (Oct 29)
She is up to balancing for 2 to 3 seconds now.

   Emma has been doing a lot better sitting in the corner of the couch too. Before she would get fussy after five or ten minutes, or lose her balance and fall over onto a pillow, but a couple times in the past few weeks she has sat there perfectly fine for 45 minutes!! I try to get her off of the corner so she is sitting up and only leaning with her back. The picture of me and her is from November 24th.

 These pictures of when my mom and brother, Zach, visited are from October 24th, hence her Halloween shirt and one orange and black sock. I joked that my brother was wearing the same Snoopy shirt that he had on when he met Emma in the hospital last October.

Botanical Gardens in May

   A week after Emma was home from the hospital and was doing well, we wanted to take her out on a first adventure. I wanted to take her to the Harry P. Leu botanical gardens where I have been many times before. A place that is very special to me and Michael because that's where he proposed to me in September 2010. This day at the gardens with Emma was actually our 7 year wedding anniversary!! (May 7th, 2018)
   We learned this day that Emma doesn't do that well in the heat, but she did well for an hour before we left because her alarm kept going off and she was getting noticeably sweaty. She also seemed to be having issues on the car ride home, but Michael later said he thought it was because of her not being sat exactly right in the car seat/ bucket, so maybe her chin was pushing on the trach so she couldn't breathe as well as normal? Also because I think she needed a diaper change (twice) and because of the heat. I had the air conditioner blasting in the car on the way home, but it doesn't have vents in the back. That's on my "important list" for my next SUV.
   Lately we have loved seeing all the new stuff Emma has been learning, but then it's silly and crazy and sad to see how big she is getting - while still being half the size of an average sized kid her age. Like look at this little baby with her short hair and teeth that hadn't come in all the way yet, and now she hasn't even used a pacifier in over two months!!

 Never mind about the date -- according to my Instagram calendar tracker, we went to the gardens on May 9th, and for our anniversary two days earlier we celebrated by taking Emma to the pediatrician, then napping, ordering pizza, and watching The Office!

Thanksgiving at Home

    Today we are thankful for very many things, we even listed them out loud on our walk tonight, but we are most thankful and grateful and excited for Emma and how "healthy" she is and for her being home for Thanksgiving this year! Last year, she was 5 months old and still passing out a lot in the NICU, but her doctor and respiratory therapists were in the works of finding a more advanced hospital who had more experience in tracheobronchomalacia (TBM). It was the best news to hear when Michael called me about that-- he had stayed in Orlando and I spent Thanksgiving with my family in Gainesville. Now Emma has been out of the hospital for almost 7 months!!  :)
   Yesterday I drove up to Gainesville to be with my parents and brother for a few hours and go to Kanapaha Gardens while Michael stayed home with Emma and made all of our food for today. He is the better cook, although I did help my mom make sweet potato souffle at her house.

 We tried to get Emma to eat some sweet potatoes (just dipping her fingers in it) and it looked like she was trying to figure out, but she did not like the ham I gave her. She threw it on the floor. Ha!

 Emma says, "Eating dinner at the table together is the best!!"  :)   Mommy agrees.

 We went for a walk after dinner. The weather was cool and very nice.

   I love having family reunion types of Thanksgivings, but Michael requested this one to be "just the three of us" -with Sasha- since it was our first one with Emma being home. He said next year we will plan to have a "regular" Thanksgiving with my family and/or his family. I don't know if Emma will be more portable (without her ventilator) by next November? Maybe we can take her to Birmingham!!   :)