Wow! I can't believe that Julianne is 21 months old. Its hard to believe that in just 3 months our little baby boo will be 2 years old! Its just going way too fast. At 21 months Julianne is EATING (more detail later in the blog), is "all done" with everything and everyone, is learning to "ask nicely," and is sweeter and cuter everyday. She crawls, she cruises, she bear crawls, she pretends to sleep and snore, she pretends to fall down and loves to "sit down pool" (i.e. sit on the steps in the pool). Thank you for continuing this journey with us and thank you for all of your prayers for our baby girl during the last 21 months plus! God has given us more than we could ever deserve or ask for and we are so very, very thankful.
Well, we've had a lot going on recently. We made a trip to the Our Lady of the Lake ER around 10 PM Sunday. We decided to give Julianne her last feeding before she went to bed Sunday night. She gagged on the first bite and then really wasn't into eating much so we gave it up and tube fed the rest of the feeding. She cried and fussed THE WHOLE TIME. We thought she was probably just tired so we brought her to her room to go to bed, read her books and then picked her up to rock her to sleep. She fell asleep not even 30 seconds after I picked her up...which is totally not normal. So, I laid Julianne down in her bed and she immediately opened her eyes. I hurried out of the room so she wouldn't try to convince me to rescue her from her bed. About 5 minutes later I went back to check on her like I usually do and she was still awake and breathing really heavy and fast. After this went on for a little while we realized it wasn't going to go away and we called Cardiology. They had me check her respiratory rate which was 54 breaths per minute. They felt that was too fast and were concerned, as we were, that she may have aspirated some of her feeding. SO....off to the ER. By the time we got there around 10:30-ish she had a fever of 100.4. They gave her some Tylenol and as soon as the fever went down her breathing returned to normal. They did an EKG just because she was there and it was good. Everyone was satisfied with the thought this was just something viral and would play itself out in the next several days, so we went home with a promise to see Dr. Chris (pediatrician) in the morning. As it turns out, it appears that she has something...possibly a sore throat, nasal congestion issue, cold of some sort. She's been kind of gaggy during her feedings. Not gaggy/retchy gaggy, just a little gaggy. Definitely nothing like it used to be. The gagginess seems to be resolving, but now she has some sort of conjunctivitis...awesome. Dr. Chris called in a prescription for some drops and I've been putting them in since last night. Her eye is so pitiful looking. Yesterday after her nap it was 1/3 full of yellow goop. Yesterday morning it was really swollen and bloody red. Its still red, but less swollen and not so bloody red. Hopefully it will be much improved by Monday or we'll be headed back to Dr. Chris.
The Ophthalmologist appointment earlier this month went revealed some good news. Julianne's astigmatism has improved! She went from 3 diopters in February to 2 diopters now. So, she'll have her next appointment in December and if her eyes continue to improve she'll avoid glasses for now. If they haven't improved then we'll get her some super cute glasses. We're very thankful for the good news.
Julianne went to the Cardiologist and it went pretty well too. She did much better than I thought she would during the Echo. Of course she cried but I was able to get her calmed down long enough for them to get some good pictures. Dr. Crapanzano said her heart looked good! The EKG on pulse ox were good. No blood pressure was taken because she was screaming and it would not have been accurate. Julianne also had labs drawn and we should find out the results Monday. If the results are good then she'll have no more labs drawn for 6 months! YAY! The blood work is to test for liver and thyroid function. Among many others, these are some of the side effects of Amiodarone. Amiodarone can also damage the eyes over time...the vessels in the eyes to be more specific. Dr. Crapanzano said we needed to get Julianne checked by an Ophthalmologist. God must've put that thought in my mind when we were at the Ophthalmologist because I just mentioned it to the doctor and he said he saw no evidence of any damage. So, we avoided a second trip to the Ophthalmologist. Less doctor's appointments = happy Julianne. Julianne's next Cardiologist appointment will be in six months, in December. That will be her last appointment before going to Boston for the next surgery, the Fontan. Julianne will likely have her Fontan around April of next year. Ugh...I'm not ready to think about that. I can't even imagine turning her over to the surgical team again...especially as "healthy" as she is now. :(
Julianne is still eating. YAY! YAY! YAY! As I mentioned, the eating has slowed due her current cold/virus, but is still WAY-HAY-HAY better than it used to be. She had been eating ALL of the food portion of each feeding. I was just tube feeding her liquids. Now that she's not feeling well she's less consistent as far as eating all of the food, but I think that's to be expected.
Julianne is still amazing us with her speech and understanding. Her newest thing is when someone says something is cute Julianne follows it up with, "it's cute...really cute" and IT IS cute. Check out the video. Be sure to note her messy bed-head. She better learn that the camera is always rolling here...even right after you wake up. :)
We've been enjoying the Summer and so has Julianne. She's been swimming, sprinkler playing and even tasted her first snowball...wedding cake flavor of course! We've got plenty of pictures. Julianne says, "Picture you, mommy?" when she wants me to take her picture. Its pretty funny because if she's swinging or swimming she thinks we HAVE TO be taking pictures of her. If we don't she just keeps saying, "picture you, picture you, picture you." Maybe we take too many pictures...no way!