A plane ride, a birthday and anesthesia

The first birthday came and went, and while I can say, "Wow time flies!" like most parents do at a year old, it also feels more like time stood still quite a bit last year. Like it was frozen, moving through water in slow motion, because there were parts I wanted to speed up and go quickly. And yes, Chloe is technically a year old, but really she is not even close to being like a one year old. So, it was a celebration, how far we have come! But also, I can understand why a lot of preemie parents celebrate coming home day, the day the kids came home from the NICU. I mean, she just had to grow in an artificial belly for a little while! It is hard for me to think of her "living" much of a life while trying to grow in the NICU. Even though she made plenty of friends while there! I am happy as long as Chloe is progressing. Things don't seem to come as naturally to her or easy for her like some full term kids. We had to work on rolling over, working on sitting up, working on crawling.  But then I think about how hard she had to work at surviving... and I think I can cut her some slack with the worry. She has had to fight her way through life at such a young age, the youngest age really! Smile. Today we continued the month of tests, tests, and more test. This time it was the MRI. We knew she had to be put out for this because they need the child to stay very still. What I didn't know until talking with the doctor, was they wanted to intubate her for this. Being traumatized from the last time we went to a hospital and had to have this done, I panicked. Oh dear. The doctor was so calming and he gave me the reasons why and said it was what he would do if it was his child. I had to let go and hope they knew what they were talking about. Two hours later, after Evan and I found a spot outside on the food court just staring into space, they pulled us back and Chloe had taken a bottle of apple juice and was smiling in the nurses arms. Of course she about leaped out of the nurse's arms when Evan and I walked in! She was so sleepy and the doctor wouldn't let her go until she was more awake, so we sat  there and tried to rouse her awake. Clapping, singing, maybe a little bouncing... I so flashed back to when I had my tonsils out when I was eight years old. I was so sleepy and could not wake up for about two days after the surgery. It just wiped me out being under, I would open my eyes and all I wanted to do was sleep. I had the nurse doing everything she could, threatening me that I couldn't leave until I woke up and ate some jello. It was so hard to do, all I wanted to do was sleep and here some nurse was bugging the heck out of me to eat food, food that probably isn't even technically food. So, back to Chloe, she pretty much took the day like a champ. Didn't faze her. Don't forget we had gotten up that morning to fly back from the week visit with my parents. Long day. To sum up the trip home and the birthday party we had for Chloe, fabulous! She dealt with the crowds of friends, and got to see some old NICU friends, such as the little boy elves that posed with Chloe for Christmas in the NICU. It was wonderful to see everyone, have some people finally meet the little one and raise a little money for March of Dimes.
Having a daughter that only eats when she is sleeping can add a certain challenge to the day. Early Intervention is turning out to be a let down in Florida. So much for no kids getting left behind...I guess they wait until you are in school to leave you behind. Anyway Evan and I are looking into an intensive pediatric feeding program. They have these programs all over the country and the research is showing positive results. The doctors and therapists all work together in a program that Chloe would go to everyday for weeks, or months depending on what she would need. I am hoping, maybe this could be the help we need. It might mean Chloe and I would be away from Evan for awhile, but we are desperate, it would be lovely if Chloe wanted to eat. She needs to eat, there is a window for development with her and we are grasping at time. Evan read on one of the sites that having a child with eating issues and on a feeding tube can be more stressful that having a child with many other types of problems or disabilities. Now how they can really measure something like that, I have no idea- but, I do understand it, just a little bit. I don't know how to explain it, but something about not understanding not wanting to eat, when I can't stop eating might have something to do with it! I mean I am kidding a little bit, but it is a little true, having to struggle with a child to eat... I don't know, it can be hard at times. But, we still don't have the feeding tube, and it still could be going that way if we don't get some help. I just think there is little known about these little ones who survive being born so young. There was no set plan, or a lot of answers with the doctors we had in St. Louis, and no set plan or real answers down here either. 

Evan and I decided before Chloe's birthday to both write her a letter every year for her birthday. No format, we could write about whatever we wanted, go in any direction, discuss the year, discuss feelings. I found writing this letter to be therapeutic for myself, just like writing on here. I don't know when we will give them to her, but at some point, she will get them as a gift when she is old enough to want them. While Evan is still working on his letter, he also wrote a song for her birthday that he sang to her. I will have to get all the lyrics at some point, but what I remember it goes on about, "Do you remember when we first met? I sure do, you were so small, when I first held you, you fit inside my shirt. My little car couldn't drive fast enough to get there in time for when you were born, when I heard you were breathing on your own, I lost my own breath..." Anyway, it was really sweet and told a little bit of his story.